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pberggren1
07-08-2010, 10:47 AM
I noticed Sangye was not on the Forum the last couple of days so I e-mailed her and got this reply:

Hi Phil
woke up Monday morning turned over in bed and got instant massive
vertigo. Long story but am in local hospital trying to get transferred
to jhu. Also lost hearing in one ear. Jhu ent put me on40 mg daiily
pred 1-2 wks. Hoping to protectt hearing. Thinks is inner ear ifxn or
wegs but no othrr signs of wegs.

Using. Friends. IPhone but won't work on our site. Sorryfor typos. Say
hi, can post this email to group.
Tale care Sangye

I am worried for her now. This sounds scary.

Lets all pray for her.

Lightwarrior
07-08-2010, 12:21 PM
Phil,
Thanks for the update. Please let Sangye know how much she means to us and how much light and love we are sending her. I hope they transfer her to JHU. Good news that there is no other signs of Wegs, also that she has ENT from JHU following her. Ask her if her Wegs specialist knows where she is??

LisaMarie
07-08-2010, 12:40 PM
Oh no....will put her on our church prayer chain...please keep us posted

MCC
07-08-2010, 03:08 PM
Oh no, how awful

Thinking of you Sangye and hope that you are doing ok.

Jack
07-08-2010, 04:05 PM
Thanks for letting us know.
I'm really scared for her. How is she going to tolerate 40mg of Pred considering all the problems she has with it?

Sangye - I'm sending you all my best wishes. I wish I could do more.

DEE
07-08-2010, 05:47 PM
Thinking of you Sangye sending you my best wishes to with a triple choc muffin
take care of you DEEx

brocky99
07-08-2010, 06:12 PM
Hope you are feeling better soon, take care xx
Lisa

Hammy8241
07-08-2010, 07:45 PM
Fingers crossed. Hope you get it sorted soon. x

JanW
07-08-2010, 11:26 PM
Oh, no, Sangye. Will pray for you.

Thank you Phil for noticing and being in touch.

elephant
07-08-2010, 11:47 PM
Sangye get better soon. Praying for you too! Miss you already!
Thanks Phil for letting us know!

Brooke
07-09-2010, 01:34 AM
Sangye get better soon!! I am so sorry you are going through this! We all miss you

Luce
07-09-2010, 01:57 AM
Sangye that's just rotten, I hope they fix you up soon and the 40mg of pred is bearable - although I have my doubts and really feel for you.

Thanks Phil, I know this is a difficult time for you as well.

jola57
07-09-2010, 07:45 AM
Thanks Phil. Please let Sangye know I am thinking of her a d wish her a quick recovery. How are you doing>

Barbara1966
07-09-2010, 08:38 AM
Thank you Phil for the information, please send her my love and prays
.

pberggren1
07-09-2010, 09:13 AM
I am very tired and exhausted and have no energy. It must be the TB meds.

crackers
07-09-2010, 10:02 AM
deepest thoughts are with you sangye.get well soon.

andrew
07-09-2010, 12:55 PM
There's an addon that I can install that should allow her (and others) to post with an iPhone. I'll give it a shot tonight.

drz
07-09-2010, 03:19 PM
Sangye that's just rotten, I hope they fix you up soon and the 40mg of pred is bearable - although I have my doubts and really feel for you.

Thanks Phil, I know this is a difficult time for you as well.

Is 40 considered a lot? I have been on 60 since my discharge from U Medical Center. I came back today today to evaluate and treat a probable flare up that is causing more hearing loss in only ear with still some limited hearing and some apparent attack on cartilage in throat area. They are starting me on 125 mg steroids every six hours and will consider starting plasmapherisis tomorrow. The first time I was here they had me on 1000 mg for some time so I wonder is 40 going to help her regain some remission. I know people vary as does the intensity of their Wegener's and my case is probably much worse than many others which means my treatment may need to be more aggressive.

Jack
07-09-2010, 04:29 PM
Is 40 considered a lot? I have been on 60 since my discharge from U Medical Center.
No, 40 would not usually be considered a particularly high dose to treat a problem, but Sangye has particular problems with taking Pred and can barely tolerate 4mg. This is going to be rough for her. :(

pberggren1
07-09-2010, 05:42 PM
Does anyone have Sangye's cell phone number. Maybe someone can call her.

Lightwarrior
07-10-2010, 12:51 AM
Does anyone have Sangye's cell phone number. Maybe someone can call her.

Andrew should, at Sangyes suggestion recently many of us sent Andrew our contact information for times just like this. How are you feeling today?? I hope you are less tired.

pberggren1
07-10-2010, 03:46 AM
I am feeling a little less tired today. I will e-mail Andrew to see if I can get Sangyes phone number from him.

Lightwarrior
07-10-2010, 03:57 AM
I am feeling a little less tired today. I will e-mail Andrew to see if I can get Sangyes phone number from him.

I'm glad you are less tired. Don't overdue things.

andrew
07-10-2010, 08:41 AM
I am feeling a little less tired today. I will e-mail Andrew to see if I can get Sangyes phone number from him.

Details sent....

pberggren1
07-10-2010, 11:43 AM
I called Sangye.

She is doing much better. Her vertigo is much less severe and her hearing is greatly improved. She is still in the aweful local hospital. She tried to get transfered to JHU but the local docs were idiots. She said she will be home tomorrow or the next day I think. It was so nice to hear her voice. She is so calm about all of this. Just hearing her voice made me rethink my situation. Anyway at least we know that she is safe and will be home soon.

elephant
07-10-2010, 12:25 PM
Thanks Phil for calling, your a great guy! So glad to hear Sangye doing better!

jola57
07-10-2010, 12:26 PM
Thank you Phil for keeping tabs on Sangye and letting us know of her condition especially since you have troubles of your own. Big hug for you,

pberggren1
07-10-2010, 01:07 PM
Lets have a group hug!!!!!!

jola57
07-10-2010, 01:09 PM
Yeay, it is becomming a biiiiiiiiiiig hug these days

DEE
07-10-2010, 02:09 PM
thanks Phil glad to hear Sangye doing ok
seems strange without her posting as it did when you were not around
hope they get you sorted soon too
take care of you DEEx

andrew
07-10-2010, 04:14 PM
Well done Phil thanks for doing that. Glad to hear she's doing ok. Can you email me her cell number so I can add it to the contact list?

Cubby
07-10-2010, 05:30 PM
Prayers sent for Sangye.


Cubby

Jack
07-11-2010, 03:37 AM
Great news! :)

Hope she gets home soon, I've missed her.
Thanks for the information Phil.

JanW
07-11-2010, 05:52 AM
Thanks for the information, Phil, and I'm glad Sangye will be back soon.

Lightwarrior
07-11-2010, 06:32 AM
Lets have a group hug!!!!!!


Okay, here it is...GROUP HUG!!!!!!!!!!!!!!! Glad Sangye is doing better

Victoria
07-11-2010, 07:49 AM
God be with you. Prayers are for your recovery. Victoria

LisaMarie
07-11-2010, 12:20 PM
please send her my prayers and get well soon wishes...miss her here.:hope she gets home soon.....my pcp is so scared of me with WG he will transfer me in a heartbeat...guess that is one good thing about this...lol atleast for me fe badfor her though.::

Sangye
07-12-2010, 06:14 AM
Thank you for the good wishes and prayers, everyone. I can feel them from here. Not out of the woods at all, so please keep it up. :)

pberggren1
07-12-2010, 06:16 AM
Do you go to JHU today or tomorrow? I sure hope they can help you there.

elephant
07-12-2010, 06:30 AM
Glad you are going to JHU, sorry your not out of the woods yet. Thinking and Praying for you Sangye!

DEE
07-12-2010, 04:47 PM
Good luck for your JHU visit DEEx

Col 23
07-13-2010, 02:51 AM
Hi Sangye
You were going so well too, my thoughts are with you and wishing you all the best. Just breaks my heart everytime I hear the Weg is flaring up again for one of our group.
One day at a time again.......Big hug
Col 23

eileenv
07-13-2010, 03:49 AM
Hi Phil
I'm glad Sangye is doing better and will be home soon. How are last time i spoke to you were tring to get things sorted out. I'm sorry your feeling bad at the moment and you better soon.

Jack
07-13-2010, 04:04 AM
Hi Phil
I'm glad Sangye is doing better and will be home soon.
She is home at the moment and making some great posts but needs a bit of time before posting about her current troubles. I'm sure she appreciates everyone's expressions of empathy and support. :)

LisaMarie
07-13-2010, 04:50 AM
Sangye...please rest and take care...keep us posted as you can....but resting should be your top priority now...we all need each other...right?
let us know if you need anything.....big hug

Sangye
07-13-2010, 11:35 AM
I'm fine, everyone. It's definitely not Wegs--Dr Seo said that and I agree, since I have no symptoms. I saw my chiropractor today and he adjusted my cranial bones and upper cervical vertebrae (ie, the areas that squish the nerves involved in vertigo and hearing). I feel way better since-- much improved hearing and much less vertigo. I go to JHU tomorrow for a hearing test and I expect this to keep improving.

Interestingly, my chiropractor said he's seen a huge number of patients since spring with acute onset of severe vertigo. He's never seen so many people at once with the same thing. The docs at the hospital said the same. They all think it's a weird virus that just affects the inner ear. That was my ENT's initial guess, too.

I decided I'm not going to share the details of the whole episode. I'm okay and getting better, and that's all that matters. I have a tendency to get too involved in the drama of reliving it, and I'm determined to break that habit!

Thank you my dear friends for all your support and encouragement. :)

Aunnie
07-13-2010, 12:48 PM
Sangye,

Welcome home,so glad you are doing much better.The details do become overwhelming at times ,so take care of you.

Good luck At JHU

When you are up to it keep us aprised of your health and your emotions

Aunnie

pberggren1
07-13-2010, 05:30 PM
Sangye, what matters most now is that you are OK and improving and on the right track.

Jack
07-13-2010, 07:00 PM
I decided I'm not going to share the details of the whole episode. I'm okay and getting better, and that's all that matters. I have a tendency to get too involved in the drama of reliving it, and I'm determined to break that habit!

Good decision Sangye. Leave it behind you and move on. :)

Sangye
07-13-2010, 10:15 PM
You're a great role model for doing just that, Jack. I always notice how you don't relive things over and over and it gives me something to emulate. :)

LisaMarie
07-13-2010, 11:08 PM
Jack you are soo wise.....I agree with Sangye....I think when you have a work history in the medical field you tend to want to over analysis things...we like answers and the why's...unfornately with this WG ...we can not always have what we want the most...ANSWERS
Have a great day:cool:

elephant
07-14-2010, 01:00 AM
Sangye glad it's not WG and hope you find a place soon. Thinking of you.

Col 23
07-14-2010, 02:33 AM
Yeah glad your back, just rest and take care.
cheers Col 23

Sangye
07-14-2010, 07:50 AM
Okay, update after JHU today. The hearing test showed severe hearing loss in the higher frequencies in one ear. Looking at the graph it looked like about 1/4 to 1/3 of the total auditory range. The audiologists paged my Wegs ENT immediately. I saw another wonderful ENT who was back and forth on the phone with Dr Kim. They were all so compassionate, and I feel completely safe in their care.

Dr Kim believes it's labryinthitis (inner ear inflammation) secondary to a viral infection. It typically lasts 2-3 weeks and the crucial thing is to get the inflammation down within the first 2 weeks to preserve hearing. Since 40mg pred for 6 days has still left me with severe loss, I have to increase to 60mg for 7 days and then taper off within a few days.

Each afternoon the hearing improves but by the next morning it's bad again. To me that indicates the extra 20mg oomph is just what's needed to get this horse over the fence.

They've got it set up so the whole high-pred adventure will be just under the magic 3-week mark for adrenal dependency. (For those new to this, if you've been on at least 20mg pred for at least 3 weeks, the adrenals become dependent and you have to taper slowly over weeks. If you go on high doses for less than 3 weeks you can taper off it quickly)

Here's the plan:
60mg for 7 days
40 mg for 2 days
20 mg for 2 days
10 mg for 1 day
back down to usual 2.5 mg

So, okay. I won't sugarcoat it, this is all quite upsetting. But I'm determined to stay positive and tough it out. I've actually tolerated the 40mg surprisingly well, and after all it'll just be 7 days at the crazy level. I can find ways to cope. There is every reason to be hopeful-- according to my docs and according to my sense of how it's responding. If the loss is permanent, then at least it's not the entire range and it's not both ears.

I'll see my chiropractor at the end of the week again. He had said the steroids were necessary, too. I'm so fortunate to have both means of healing this, as one without the other would be much less effective.

Thank you for all your good wishes, everyone. Keep 'em coming, please. :)

Lightwarrior
07-14-2010, 11:14 AM
Sangye,with

I'm sending you continual light and energy. When you go into your crazy level, remember we are here for you just as you have always been here for us. It would be an honor to be the tough one and let you vent to us. I am so happy that you have a team with whom you feel safe and cared for.

Sangye
07-14-2010, 11:35 AM
Thank you, LW. I really just want to focus on the actual condition and try to avoid my usual reactiveness to it, since that will increase my anxiety and depression about it. It will take all I have to do it, but I've been in training for awhile now. :)

onatreetop
07-14-2010, 12:00 PM
Thinking of you and send good health your way. been busy with docs no hospitals thank god. I am at the begining again at a year now. 60mgs of pred and 100mg cyt. I know it efected you horribly and hope you are throught the treatment soon and smoothly. We all have and will make it through what we know we have to do. Again best of luck on the tapper. I havent got the go ahead yet 2 start but cant wait.

LisaMarie
07-14-2010, 07:03 PM
keep u r head up...i too am now on 60 of pred and start IV CTX or Rituxan next week....still recovering from mtx my thoughts and prayers will be with you

Sangye
07-14-2010, 10:28 PM
Thanks, Lisa Marie. I hope it goes well for you. Still no insurance decision on rtx?

Sangye
07-14-2010, 10:29 PM
Thinking of you and send good health your way. been busy with docs no hospitals thank god. I am at the begining again at a year now. 60mgs of pred and 100mg cyt. I know it efected you horribly and hope you are throught the treatment soon and smoothly. We all have and will make it through what we know we have to do. Again best of luck on the tapper. I havent got the go ahead yet 2 start but cant wait.
Thanks, Onatreetop. I've been wondering how you're doing!

So you're starting ctx and high-dose pred again now? (I lost track :( ) What happened?

elephant
07-15-2010, 01:02 AM
I was wondering too, how are you going.

DEE
07-15-2010, 08:05 AM
Sangye thinking of you good look with your tappering take care of you DEEx

Sangye
07-15-2010, 09:16 AM
Thanks-- this is just Day 2 of 60mg pred (after 6 days of 40mg) so I've got a ways to go. Cumulative effects are really hitting tonight. Oy. I remember this.

LisaMarie
07-15-2010, 09:46 AM
Thanks, Lisa Marie. I hope it goes well for you. Still no insurance decision on rtx?

no the doc is giving them til friday to say yes to rtx....if not i start iv ctx he wants me on something now but prefers rtx as i had issues with small doses of po mtx...so trying to survive ob 60mg of pred....feeling better after my nap from the plane rides to florida....hope u feel better soon

Terri
07-15-2010, 12:05 PM
I've been so busy I've missed out on how everyone is doing. I haven't been checking the forum.
I'm sorry to hear of your troubles Sangye but I have faith that you will beat this thing too. You are one to overcome obstacles better than most. I will continue to keep you in my prayers along with all of my weggie brothers and sisters.
I have another month off from work, if you need help with anything Sangye, please let me know. I'm only 4 hrs away.

Natalie
07-15-2010, 08:47 PM
Hi Sangye , Its been a little while since I have dropped in and gee yous have all gone and got sick on me ,, :(
thinking of you get better ok :)
My pred doses has been Increased in the last 2 weeks .. Bloods are climbing .
but have decreased today 32 down to 28 ,,
Nat ::

elephant
07-15-2010, 10:59 PM
Natalie how is everything else going?

Sangye
07-15-2010, 11:10 PM
I've been so busy I've missed out on how everyone is doing. I haven't been checking the forum.
I'm sorry to hear of your troubles Sangye but I have faith that you will beat this thing too. You are one to overcome obstacles better than most. I will continue to keep you in my prayers along with all of my weggie brothers and sisters.
I have another month off from work, if you need help with anything Sangye, please let me know. I'm only 4 hrs away.
Thank you, Terri. It's a testament to your kindness that you'd offer to come 4 hrs to help! Wow, girl-- so compassionate of you. :)

Sangye
07-15-2010, 11:12 PM
Hi Sangye , Its been a little while since I have dropped in and gee yous have all gone and got sick on me ,, :(
thinking of you get better ok :)
My pred doses has been Increased in the last 2 weeks .. Bloods are climbing .
but have decreased today 32 down to 28 ,,
Nat ::
Oy, the Wegs rollercoaster. I can't complain though-- mine isn't Wegs, just a diversion.

What's going on with yours?

Lola
07-16-2010, 05:39 AM
Hi Sangye,

I have been off the forum for 6 or 7 weeks now. I was stunned to see that there was an update on Sangye, and opened it with great trepidation. I am so glad that you are able to quickly taper the prednisone and that this is not a WG flare! Made me sick to my stomach to think something might have happened to you!

Oddly enough, I woke up in the early AM hours on May 15 with vertigo. I self-medicated with meclizine and Scopolamine. I was in a pinch and couldn't get out of bed. I recovered fairly quickly, but had a repeat of the vertigo attack on June 17 in the early AM hours again. The ENT does not believe it's WG, but a viral infection. I have fluid in my ears and am now on daily Zyrtec. We'll see.
(I was flaring at the time, however!!!)

Just had 1st Rituxan infusion of Round 2. There's more to tell, but I meant this post to be about you, not me.
Take care, Dear.

Brooke
07-16-2010, 05:58 AM
Sangye - I am glad you are tolerating the high dose preds somewhat ok. At least you do not have to take them for that long, count down the days!!

Sangye
07-16-2010, 10:52 AM
Lola-- wow, what an amazing coincidence. I sure hope your vertigo is gone for good. Thank you for your very sweet comments. Means a lot. :)

Brooke-- I'm definitely counting the days! I hope it works to stop the vertigo and imbalance as well as the hearing loss. I'm staggering everywhere.

Terri
07-16-2010, 11:27 AM
As much as you do for us Sangye, I certainly would come help you out.
If you are staggering about at least have someone to check on you everyday. You could easily fall and be down awhile before anyone would know. Please be careful.

Sangye
07-16-2010, 11:37 AM
I know you're serious, that's what is just amazing to me. :)

Please don't worry. I have people checking on me and helping me get to appts, etc.... The good thing is that I was quite weak for so long and was constantly at risk of falling, so I learned how to be very careful. It took a few falls to hone my skills. For example, I have a stand-up shower (ie no bathtub) that is narrow, and when I close my eyes to rinse I make sure to be in solid contact with 2 walls to maintain my spatial orientation. The good thing about living in a teeny tiny basement is that a wall or countertop is always just a few feet away. :D

Terri
07-16-2010, 11:52 AM
I knew you would be ok but I will rest easier tonight knowing you have people to check on you.:)
Please have a good night.

Aunnie
07-16-2010, 12:30 PM
Sangye,
I don't any of you very well but you seem to be very popular,cared about and knowledgable.
Please know you are also in my thoughts,I don't do very well on pred either.
How sweet of Terri,what a supportive group.
I guess we all wish we could help each other more,because we get it (I think) about this crazy disease.

Let us know how you are doing.
Good luck and be careful with the dizzies.

Aunnie

elephant
07-16-2010, 11:35 PM
We have a wonderful group here on this forum. I know if one of us needed help someone on this forum would come to their rescue.

Theresa
07-17-2010, 04:24 AM
Sangye,
I have not been in this forum long but you have helped me out with every question or problem I have had. I really appreciate it. Know that I am praying for you. Keep us posted on how you are doing.

DEE
07-17-2010, 06:47 AM
hopefully following all the good advice she gives me doing as she s told resting and taking things easy :) take care or you for a change DEEx

Sangye
07-17-2010, 11:50 AM
Thanks you guys. Your words are great comfort to me. I'm doing okay. Hearing and balance are still way off, but my chiropractor helped a lot today and I go back on Monday. Hoping the 3 more days of 60mg pred do the trick!

Terri
07-17-2010, 11:55 AM
[QUOTE=Aunnie;19482]Sangye,

I guess we all wish we could help each other more,because we get it (I think) about this crazy disease.


Yes Aunnie, I think any of us would take that step to help where we can. I have always tried to help people whenever possible but since being diagnosed, once I found my own "new normal", I seem to have more patience and compassion for others. I think too it is because we get it.
Good night my weggie friends, may everyone have a peaceful night!:D

Natalie
07-19-2010, 09:03 AM
hi Elephant :) , what going on .. boob is still giving me greif .. still hasnt totally healed yet .. almost but not quite .. think there is still a underlying infection there somewhere .
my PR3 level was 32 on the 29th June so my specialist up on pred dose from 5mg to 15 mg daily . 2 weeks later PR3 level had dropped to 28 ..

I see him in two more weeks . never ending story .
I have been getting sore joints and the last say 3 weeks have noticed a lot more crusting in my nose .. My nose has been really really good for years ? . so Im just going with the flow at the moment wait and see what comes of it .
How are you ? well I hope ..

Natalie
07-19-2010, 09:06 AM
good night :) good morning Terri :)

Nancy
07-19-2010, 04:09 PM
Sangye -
I am so sorry that you have been having all these issues - Wegs or not - they still affect the heart,soul and energy that we can apply to the world about us. I have been off of the forum and also saw this post with your name... I am sorry for the high frequency pitch loss - as well as the high dose pred... Just when things were seeming to work at least for this time period for you... As you can tell you are highly valued and appreciated for your humor, intellect and empathy for us all. I hope that your pred time runs short and your recovery rapid and complete!!!
Anything to help that I can do - please let me know...
Nancy

Sangye
07-20-2010, 01:49 AM
Thank you, Nancy. I really appreciate your kind words of support and encouragement.

Today is the last day at 60 mg. As far as I can tell the hearing is improved from first couple days but still quite bad. The vertigo remains. I'm still staggering around. I'll speak to my Wegs ENT later today to see what to do. It doesn't seem the 60 mg did anything more than the 40mg was already doing. We'll see.

elephant
07-20-2010, 11:19 AM
So if this is a virus you would think that the Vertigo would go away with that high dose of Prednisone Sangye.

elephant
07-20-2010, 11:22 AM
Hi Natalie, I am doing ok. I am asking my WG specialist to see if I need to increase my prednisone...more stuffy and feel like sometimes talking inside my head. I noticed less taste/smell! Oh no and I love my muffins!!!
Natalie it sounda like a flare, but your WG seems to be on top of it. How is the 15 mg of prednisone doing for you? Hopefully your boob wound will close soon!

Sangye
07-20-2010, 11:29 AM
So if this is a virus you would think that the Vertigo would go away with that high dose of Prednisone Sangye.
I'm not sure if it would yet. I didn't get to talk to the ENT today. His focus was totally on the hearing loss and preventing it from becoming permanent. I'll try to call him tomorrow and email Dr Seo to get his input as well. Last week he said treating this was the ENT's call, that he would know best.

Doug
07-21-2010, 06:59 AM
I noticed that I use more spices and condiments (like salsa) on food simply because my sense of smell and taste aren't up to snuff, possible forever. Gad!

pberggren1
07-21-2010, 08:48 AM
I am actually suprised to see some of my smell and taste coming back the last couple of days.

elephant
07-21-2010, 10:09 AM
That is great Phil! So what are you eating? Taco's? muffins?

pberggren1
07-21-2010, 02:19 PM
Anything and everything!

elephant
07-22-2010, 08:29 AM
Sangye, hope your ok. Did you see the ENT today?

JanW
07-22-2010, 10:08 AM
I was just thinking that too -- have we heard from Sangye today?

pberggren1
07-22-2010, 11:02 AM
I was thinking the same thing about Sangye!

elephant
07-22-2010, 11:07 AM
Where are you Sangye? It's time to call her if we don't hear from her soon.

pberggren1
07-22-2010, 01:19 PM
Don't forget Sangye! I have Your number!!! Ha Ha!!

Sangye
07-23-2010, 12:10 AM
You guys are so funny. I had an early morning appt with my chiropractor and it's a long drive. (I'm not driving yet, don't worry about that, either) I was really wiped out and took a 1 hr nap. I got up and walked around and thought "I'm just gonna lay down for another minute or two." I was out for another 2 hours!

The chiropractic work is really helping with the vertigo. I might not get to talk to my ENT until tomorrow--that's his clinic day.

elephant
07-23-2010, 12:40 AM
Glad your ok, I was a little concerned. Sounds like the vertigo is on it's way out the door! Keep us updated on the ENT stuff. :)

DEE
07-23-2010, 01:44 AM
Where are you Sangye? It's time to call her if we don't hear from her soon.
Sangye dont go scaring us glad your ok take care DEE x

LisaMarie
07-24-2010, 02:50 AM
Sangye
How are you feeling today??I am still in my waiting on return calls from insurance companies and doc's ...Patience is not my strong suit today.
Hope you are still slowing getting better

Sangye
07-24-2010, 08:40 AM
Thanks for asking! :) I saw my Wegs ENT at JHU today. He said I had "sudden sensorineural hearing loss" which he thinks was caused by an inner ear virus. He said if a virus causes only vertigo, it clears without doing damage. But if it also causes hearing loss that's usually permanent, so they give high-dose steroids hoping to save at least part of the hearing range.

The vertigo has pretty much resolved--everything is just kind of bobbing and sloshy now. That should continue to improve.

When it all began, I developed numbness on that side of my face, ear and head, and none of that sensation has returned. He's not sure about the cause of it. My original brain MRI was clear, but he'll have a JHU radiologist look at it and see if we need to do another. He also might do a more focused CT of that area.

My hearing test showed that I gained back one of the high frequencies compared to 1.5 wks ago. Frequencies above that are still totally gone. But the range that hears human voice is intact, which is the most important. Things sound tinny to me. (That's on top of the tinnitus) Like everything has a zzz sound to it. He said that's normal for the ranges I lost and I'll get used to it. The hearing loss is likely permanent at this point. I can live with it.

He's going to talk to an otologist there to see if steroid injections into the ear will help, since I'll be off the big pred doses in a couple days.

He had to tell two patients before me that they had cancer, and each had to start radiation and chemo. I overhead the conversations and when he came in the room he just looked beat. He apologized for being late and I felt so bad. I told him I'd heard and not to worry. My little concerns are nothing like being on either end of those conversations.

elephant
07-24-2010, 09:13 AM
Sangye glad you back, the virus sounds like Bell's Palsy..numbness to the side of the face. Hope you get it all resolved soon, so glad the WG is sleeping. :)

Sangye
07-24-2010, 09:27 AM
Bell's Palsy is pretty distinctive and typically involves the mouth and eye. Those are fine. Bell's Palsy is inflammation of the Facial nerve. My symptoms encompass the Facial nerve distribution plus other sensory nerves on the side of the head, and even the ear canal. The numbness follows an odd pattern-- like someone hit me on the side of the head with a frying pan.

elephant
07-24-2010, 10:59 AM
Sangye maybe you have Bell's Palsy plus 5 minus two( mouth and eye). :)

Sangye
07-24-2010, 11:04 AM
You know, with Wegs, that sounds about right. LOL :D

pberggren1
07-24-2010, 11:31 AM
I didn't know that Wegs involved Math.

elephant
07-24-2010, 10:30 PM
Actually everything in this world is mathematical.

brocky99
07-25-2010, 03:16 AM
What a small word my 12 year old daughter got diagnosed with bells palsy yesterday. She came home on Thursday night to tell us that her left hand side of her face had dropped. We took her to the doctor who referred her upto the childrens ward at our local hospital. She had some blood tests done and then sent her home with 40mg of pred a day and some anti biotics. I have told her all the side effect of the pred and so far she is ok. Hope u get better soon Sangye xx

Lisa

Lightwarrior
07-25-2010, 03:26 AM
Actually everything in this world is mathematical.

I agree..my grandkids do groan however when I tell them that math is the key to unlock all of the secrets in the universe.

elephant
07-25-2010, 03:27 AM
You got it, we just need a guinness to figure that one out!

Sangye
07-25-2010, 05:38 AM
Actually everything in this world is mathematical.
Except for the very thing that conceived it: thought. :)

Sangye
07-25-2010, 05:41 AM
Brocky, how bizarre about your daughter's Bell's palsy. I suggest bringing her to a chiropractor as soon as possible. It can't cure it, but it can greatly shorten the duration and diminish the severity. And, it addresses what was probably the underlying cause in the first place-- diminished nerve conduction to an area, which made it susceptible to a viral infection,

Sangye
07-25-2010, 06:23 AM
I'm feeling pretty good today. A friend drove me to JHU yesterday and while it was very difficult to do, I made myself walk a lot. I lost so much muscle in my legs during that hospital stay, and it just makes it harder to balance with the smooshiness residual of the vertigo.

I'm actually having a fair amount of anxiety about the vertigo returning. Thoughts like "What if I'm driving and it hits again like that?" I'm never paralyzed by fear, but I didn't know how I'd find the courage to try driving again. Today my desire for independence was greater than the anxiety and I decided to give it a try. I took myself grocery shopping! Very slowly and carefully. I hadn't driven in 3 weeks. It went well, and I'm taking it easy the rest of the day. The combo of the tinnitus, hearing loss, head numbness and sloshiness has me on neurological overload. From a neuro point of view, my brain is in high-gear trying to adapt.

Lola
07-25-2010, 06:29 AM
Hi Sangye,

I'm so glad you were able to drive successfully today. I understand your need for independence. I had planned to drive the 5 1/2 hrs. to my 2nd Rituxan infusion of round 2 tomorrow - BY MYSELF! My plan is to stay with my daughter and play with the grandkids. A real roadtrip! I could visualize myself with the moon roof open, and driving across the mountains with beautiful blue skies.

This morning I turned over in bed and was struck with another bout of vertigo. This time very slow spinning of the room. I am so disappointed, and wonder what might have led up to it - except that I had recently taken in way too much sodium and was dehydrated yesterday.

My husband is happy to drive me, and I'll still get to see the family, but am oh, so disappointed!

Jack
07-25-2010, 06:40 AM
Sangye, just take things real slow - you'll get there in the end, but you can't risk taking short cuts.

(did that make any sense?)

elephant
07-25-2010, 06:44 AM
Sangye good for you glad you got out to the grocery store. Baby steps..

Sangye
07-25-2010, 07:15 AM
Jack and Elephant, no worries. I can't move quickly if I wanted to!

Lola, dang. But I wonder if you have Meniere's disease? My ENT and I discussed that as a possibility yesterday. He said the only thing to do for it is a low-salt diet (already doing that) and diuretics (already on those). I bet the sodium threw you off.

Even without the vertigo, you shouldn't drive yourself to the rtx treatments. Even if you tolerated them fine before, you never know. Five hours is a long time to be out there all alone with a new drug in your body.

Lola
07-25-2010, 09:25 AM
I wouldn't be driving TO the treatment, just to my daughter's house so she could drive me to and from, with recuperation at her house. But you're still right about the rest of it. My plan had been to drive home after a couple days at her house. I just cannot predict how I'll be from day to day yet.

Hmm. Meniere's. I'll study up on it. First time I've been adversely affected (at least in that way) by increased salt.

Jack
07-25-2010, 06:48 PM
Hope it is not Meniere's - my mother had that and eventually had to resort to severing the nerves to one ear in order to stop the vertigo, but she was still left with terrible tinnitus type noises.

pberggren1
07-25-2010, 09:08 PM
That is aweful to hear about your mother Jack. I hope she was able to cope with the tinnitus.

Jack
07-25-2010, 09:29 PM
To be honest, she never really got used to it and it made life a bit of a misery. She had it very bad with roaring and howling noises in addition to the usual high pitched whistle. The op she had also made her deaf in one ear, but she had no option because the vertigo she was suffering from was of the sudden onset type that made her fall down.

I just read an extract about the disease on the web and it seems that it can be related to Wegener's, but then I suppose that we are always on the lookout for links.

andrew
07-25-2010, 09:49 PM
Yeah well it goes to the genetic predisposition arguement. You, me and others have relatives with related or auto-immune issues. There has to be something in that.

Sangye
07-25-2010, 10:48 PM
My stepdad had Meniere's, too. He suffered horribly from it and was quite disabled from other conditions as well. He never tried a low-salt diet, though. In fact, he and my mom ate out a lot--daily high salt diet.

With Meniere's, bouts of vertigo only lasts 24 hrs or less. It doesn't respond to pred.

With the exception of the left sided numbness, mine looked just like viral labryinthitis-- the vertigo was non-stop for over a week, it responded to pred, it gradually improved over 2-3 wks. And, many people around me had the same thing. Time will tell.

Meniere's does occur more often in people with autoimmune diseases. My stepdad developed it about the time he developed Type 2 diabetes. He could have cured the diabetes easily enough by correcting his diet, but he thought that would cramp his style. :)

Jack
07-25-2010, 10:52 PM
Having shared hospital wards with patients suffering from Diabetes and all its complications, I think I would take it very seriously indeed if I ever contracted it. I did not realise how devastating it could be until I witnessed the results.

elephant
07-25-2010, 10:57 PM
Diabetes is horrible...it kinda reminds me of WG- diabetes affects you head to toe..causing nerve damage from the eyes, heart and toes...

Doug
07-26-2010, 04:14 AM
I agree..my grandkids do groan however when I tell them that math is the key to unlock all of the secrets in the universe.

Put me on the math bandwagon! I couldn't have done my job without it, and I came to appreciate it more the longer I worked, for the answers it gave me that resolved problems that came up on the production floor.

pberggren1
07-26-2010, 06:14 AM
Jack, your mom's tinnitus sounds exactly like mine.

I have a friend with type 2 diabetes and he could correct it as well but feels he has to have sugars and meats and processed foods and, well you get the picture. His style would obviously be cramped.

I love math as well Doug.

drz
07-26-2010, 09:21 AM
Diabetes is horrible...it kinda reminds me of WG- diabetes affects your head to toe..causing nerve damage from the eyes, heart and toes...

I know several people like myself that have both. This also seemed rather common at my in-patient hospital.

I know they exacerbate each other and both are a type of auto immune disorder but wonder if they are related in any other ways.

brocky99
07-26-2010, 07:34 PM
My mum has menieres disease, I have seen it where she has been fine one minute and the next she has collapsed and is being violently sick everywhere. It did it once whilst she was shopping in Asda, I wanted to get her straight to hospital but she refused and just wanted to go home I think she was embarassed. My Mother in law has type 2 diabetes but she has controlled it with her diet, I think she has done brilliantly she just completely changed everything she ate and is doing really well. My Dad has just been diagnosed with it also this last week or so so he his still trying to get his head around it all, he has been given medication though to control it, it will definately change his life because my mum nad dad own a pub and i would imagine he will have to cut down a lot on the beer intake. Going to check out the link for WG and menieres. My boss also had meieres but sadly he passed away on Saturday, Pancreatic cancer, Im gutted he was a very approachable and genuine bloke and very generous my kids loved coming into the office with me he always gave them money for a treat and spent a fortune on them every christmas, birthday and easter they thought he was great to the point they called him Uncle George. He always treated his staff very fairly and in 13 years not one day did I think going to work was a chore it was always a pleasure and I loved it, and that was mainly down to george and the others I worked with.

Sangye
07-26-2010, 11:01 PM
Brocky, I'm so sorry to hear about George. It sounds like he led a wonderful, kind life and many will miss him. Please take care of yourself. Grief takes a lot out of you.

pberggren1
07-27-2010, 01:01 AM
That's a beautiful story Brocky. I'm glad that George was a part of your life.

Sangye
07-28-2010, 03:12 AM
I'm just updating on how things are going at this point. I still have the residual of the vertigo. I've been referring to it as "smooshiness" since it affects my vision, balance and even my thinking. (You can get an idea of exactly how it feels if you shake your head quickly a few times and notice how your head feels and your vision is after you stop.) My balance is still way off and the vertigo constantly feels like it's going to start again.

It's been 4 weeks of this. I'm really tired of it, wondering if it's just going to be this way from now on. I don't normally let myself think like that. I'm just feeling down about it at this point. It's hard to constantly feel like you just stepped off a merry-go-round.

Sunday was the last day of the higher pred dose-- 10mg. I didn't feel right about dropping it all the way down to 2.5mg yesterday, so I took 5mg yesterday and again today. I'm glad I did. I sure felt the drop in energy and mood. And I've had a splitting headache since last night. My eyeballs hurt a lot. It might be coming from my sinuses. I just can't tell. I'm also retaining a ton of fluid. I took more lasix, which pulled off a lot, but I don't want to take more at this point without talking to a doc.

I've got a call in to my ENT doc.

Jack
07-28-2010, 03:29 AM
I wish I could suggest something Sangye, but I don't know the answer any more than you do. So sorry that you are feeling down at the moment, you know that this will pass given time so try to just devote energy to dealing with the immediate problems and look forward to tomorrow being a better day.

Brooke
07-28-2010, 03:33 AM
That sucks Sangye!!! I would hate to feel like that all the time! It should get better, hopefully you hear back soon from ENT and maybe they have some ideas on what to do. Take it easy!

Sangye
07-28-2010, 03:41 AM
Thanks, you guys. The sinus and eye pain is just putting me over the top. The elevated brain pressure condition I have is at highest risk when dropping pred too quickly. I can't tell if it's that, either. Grrr.

One of the things I'm upset about is that while I was on the higher pred my lower extremities were completely free of swelling. I hadn't seen them like that since 2006. I could bend my toes, move my ankles, etc... It was so freeing, wonderful without all the pain of trapped fluid. All this time we've thought the swelling was due to vein damage from the extensive clots I had. But it looks like it's due to inflammation instead. All the fluid came back by the time I got to 10mg pred. It's miserable. This has been a huge factor keeping me from getting stronger by walking, standing, etc.... Man, I'm really having a hard day. :(

elephant
07-28-2010, 03:42 AM
Sangye, my mom had vertigo for two months...she had to hold on to things and could not walk far. She is a very fit person. She had all this work up done...nothing came up, doc just said it was a virus. Maybe yours will take that long, it will go away.
I would take it slow with the prednisone too. Glad you called your ENT.
My eyes hurt all the time, secondary to the sinuses being inflamed. Sangye, usually don't have sinus involvement?
I don't have much to say either except, "Bye, Bye Vertigo, you have no business playing with Sangye!"

Sangye
07-28-2010, 03:45 AM
I don't normally have sinus involvement. That's why I always say I don't know how you guys deal with it.

Thanks for telling me about your mom. It helps to know it really can take that long before it LEAVES FOR GOOD. <--- That made me feel better.

JanW
07-28-2010, 04:56 AM
Sangye - is there any chance that you could stay on a higher dose of pred than you have been on and see the swelling in your legs disappear on a permanent (though drug induced) basis ? I know that you have a lot of side effects (and maybe the swelling only goes away if the drug is at unsustainably high levels anyway) but I thought I'd ask. Obviously you and the docs would have to do the cost benefit analysis.

As for the other stuff, I hope you get your answers soon.

DEE
07-28-2010, 05:01 AM
Sorry your not so good Sangye hopefully things will get better soon . DEEx

Sangye
07-28-2010, 05:09 AM
Jan, I don't think so. Since the Wegs is under control, this is just the level of inflammation that my body is stuck with.

Now at least I understand why using compression stockings has never helped with the swelling, and actually made it worse. It was never a circulation problem in the first place.

JanW
07-28-2010, 06:14 AM
I'm not clear. Are you saying that your body has a level of inflammation that cannot be medically controlled? What (if anything) could control it then?

I just can't imagine having swelling that you can't control. Sounds awful.

Hammy8241
07-28-2010, 06:17 AM
I've been referring to it as "smooshiness" since it affects my vision, balance and even my thinking. (You can get an idea of exactly how it feels if you shake your head quickly a few times and notice how your head feels and your vision is after you stop.) My balance is still way off and the vertigo constantly feels like it's going to start again.

Sangye, please look after yourself. Hope you get thing sorted and settled soon.

Tried your exercise? and I can see a new thread 'WG & head injuries' starting soon as we all get dizzy and fall over:)

Has phil sent you the flowers yet?:(

Looking forward to you getting back to your nagging best:cool:

x

misskay
07-28-2010, 06:22 AM
so sorry you're having such a hard time right now...

Lightwarrior
07-28-2010, 06:25 AM
Jan, I don't think so. Since the Wegs is under control, this is just the level of inflammation that my body is stuck with.

Now at least I understand why using compression stockings has never helped with the swelling, and actually made it worse. It was never a circulation problem in the first place.

That darned inflammitory response!! I wouldn't be surprised if your doc ups your pred, I wonder if they had you go down too quickly??? Your body seems very sensitive to change, I hope you have a call back by now and things are starting to make sense. I'm sending you light (high anti-inflammatory light and energy).

Sangye
07-28-2010, 06:46 AM
Still waiting to hear back....I took another mg of pred to see if it might ease up the eye and head pain.

I have a feeling that this global fluid retention is due to coming off the high doses so quickly-- like a reactive inflammation. That would cause my sinuses to swell, too. Some drugs are famous for this type of rebound effect. Going off of them gives you the very symptoms they were suppressing. If that's the case it's temporary.

Jan, yes. The swelling returned once I got below 20mg pred, so even staying on 10mg wouldn't be enough to control it. I'll be curious to see what Dr Seo has to say about it.

It'd be nice if the lower extremity swelling disappeared because of the Ayurvedic changes I made, and that it's only reappearing temporarily now because of the pred drop.

Terri
07-28-2010, 01:04 PM
Sorry to hear you are feeling so bad. Hope you get some answers soon.
The picture is too small in my avatar but if you could read it, it says:
Nothing is impossible with the power of prayer and the healing hands of God.
I wish you better days soon my friend.:)

pberggren1
07-28-2010, 03:15 PM
I wish I could do something for you Sangye. I will pray for you. If you have any questions at all about ear, nose, throat, or sinuses just let me know. I wish I was right there to comfort you. I want to help any way I can.

Sangye
07-29-2010, 12:30 AM
Thanks you guys. I really appreciate your kindness!

The headache improved by late last night. It's still there a tiny bit and my sinuses feel sort of sloshy. I'm going to repeat the pred dosing I did yesterday-- 5 mg and an extra 1 mg if I need it later on-- and see how it goes. I never heard from my ENT doc yesterday. He's only in clinic on Fridays and unless there's an outright emergency he's really hard to get hold of.

elephant
07-29-2010, 04:52 AM
Call again. Leave another message, I have done that before. :)

Sangye
07-29-2010, 05:04 AM
I saw him on Friday morning and he said he'd call me that afternoon with instructions. He didn't, so I called on Monday. Called again yesterday. They email him each time, but I suspect unless it's an emergency it gets buried in the heap.

So far today I'm doing okay on the 5mg pred and won't take the extra 1mg.

DEE
07-29-2010, 05:36 AM
glad to hear things going on better today Sangye DEEx

elephant
07-29-2010, 08:41 AM
So Sangye that you have not heard yet from your ENT. Sangye glad your doing ok.

Sangye
07-29-2010, 08:55 AM
Okay, he finally called. I had given up on hearing back!

He wants me to see an otologist at JHU to see about doing steroid injections in my ear. He said that while it's not likely that I'll get my hearing fully restored, there is a chance that it could actually continue to worsen. He wants to do everything possible to avoid that, but feels it isn't a good option to keep me on high dose pred because of the risks associated with that. He's spoken with the otologist, but that doc will have to consult with me to see if injections are actually likely to help.

He didn't think it will help the vertigo, but it won't hurt it, either.

Has anyone else had steroid injections in the ear? It sounds awful. I'm cringing. But if it helps me keep my hearing....

elephant
07-29-2010, 09:02 AM
Glad he called back. DId someone on this forum get injection shots or talked about them re:ear?

pberggren1
07-29-2010, 09:02 AM
I have heard of it before Sangye but I have not known or talked to anyone that has had that done before.

I will e-mail my ENT and ask him about it.

Sangye
07-29-2010, 09:20 AM
On the plus side, my chiropractor worked on my cranial bones for the numbness on Monday and last night I began to get some sensation on the side of my head. I see him tomorrow for "Part Two."

elephant
07-29-2010, 11:25 AM
Keep us posted on Part two!

Terri
07-29-2010, 12:13 PM
Hi Crackers,
How are you doing?

pberggren1
07-29-2010, 04:32 PM
My ENT got back to me already.

Here is what he says Sangye:

I think that the steroids by mouth and by injection into the middle ear have both shown good results on studies. The advantage of injecting the steroids into the middle ear is that it would diffuse directly into the inner ear t they would have the most impact. Two important advantages of this is that you get a high concentration of the drug where you need it to work. A second advantage is that you avoid many of the side effects of using prednisone by mouth. Steroids injected into the ear have shown good results in some forms of hearing loss and also some forms of dizziness.

Sangye
07-29-2010, 10:33 PM
Yup, that's exactly what my ENT said! How funny, if you were here I'd swear it was the same guy. Thanks for asking, since it helps us all have a better idea of what's out there.

JanW
07-29-2010, 11:08 PM
Sounds like you've got a great ENT there, Phil.

elephant
07-30-2010, 01:24 AM
Diito to the great ENT!

pberggren1
07-30-2010, 05:24 AM
Yes, I have seen 7 ENTs before this one and he is by far the best. His website is: www.drmiaent.com (http://www.drmiaent.com)

drz
07-30-2010, 01:52 PM
Okay, he finally called. I had given up on hearing back!

He wants me to see an otologist at JHU to see about doing steroid injections in my ear. He said that while it's not likely that I'll get my hearing fully restored, there is a chance that it could actually continue to worsen. He wants to do everything possible to avoid that, but feels it isn't a good option to keep me on high dose pred because of the risks associated with that. He's spoken with the otologist, but that doc will have to consult with me to see if injections are actually likely to help.

He didn't think it will help the vertigo, but it won't hurt it, either.

Has anyone else had steroid injections in the ear? It sounds awful. I'm cringing. But if it helps me keep my hearing....

I tried this but it didn't result in any changes a week later. I have had improvement in my hearing just from regular treatment for WG but this can also disappear real quickly when you experience a flareup. Right now I am hoping for some slow longer term improvement in my hearing again. Otherwise i might be looking a cochlear implant when i get off Cytoxan since that should improve hearing. I lost all hearing in right ear and only hadd about 15% hearing in my left ear before WG and lost about half of that from WG during last flareup.

pberggren1
07-30-2010, 02:31 PM
Oh boy drz. That is sever hearing loss. I have no hearing in my left ear and about 50% left in my right. My Grandmother paid for my hearing aids about 5 years ago - $5,250. They are well worth it. but your hearing loss sounds much more severe. Do you know what caused your hearing loss if it was not wegs that did it? A cochlear implant may be an option, but I would shop around and get lots of second opinions.

God Bless,
Phil

elephant
07-30-2010, 08:49 PM
It is probably the WG. I had severe hearing loss in both ears, and I was given prednisone taper packs ( this is before I was diagnosed with WG), and that seem to help temporary. The WG was attacking basically the left side of my face. Along with fevers and swollen joints.....ect

DEE
07-30-2010, 09:11 PM
wg started in the left side of my face too. have lost hearing in that hence hearing aid and the other symptoms as above
its always seems to be were my infections start to dont know why thats why having problem with just left eye i think DEEx

Sangye
07-30-2010, 10:26 PM
I don't know if the ENT would suggest steroid injections for hearing loss secondary to Wegs, since we didn't talk about it. He's still going on the theory that this is a viral infection of the inner ear, and ongoing inflammation needs to be controlled to limit hearing loss.

On the plus side, the last two chiropractic treatments have really decreased the tinnitus. I kind of forgot about it, actually. (I can live with it, but it'd sure be nicer to live without it.) The side of the head numbness is also improving. Balance is improving, but each morning it feels off again. My chiro said that laying down probably allows fluid to build around the cochlea. I'm having some joint pain that feels like Wegs pain, but it's still mild and intermittent. It could be due to the big drop in pred. I'm giving it some time before I decide that it's Wegs or not.

I did okay at 4mg pred yesterday and will give 3mg a try today. I'm hoping to get back down to 2.5mg soon, but I won't be that upset if I have to stay at 3.

Col 23
07-31-2010, 12:35 AM
Are you on antibiotics Sangye?
Col 23

Sangye
07-31-2010, 12:48 AM
No, I don't have a bacterial infection. The inner ear infection is a virus--antibiotics don't work for viruses and are a great way to create a secondary infection if taken when not needed.

elephant
07-31-2010, 01:17 AM
Sounds like your vertigo is slowly moving out, but it's taking it's time. I sleep upright because of all the sinus issues on the left side, so that the draining( of the sinuses) won't breed bacteria.

Sangye
07-31-2010, 08:55 AM
I had a funny day at JHU today. My ENT said to stop by to pick up orders for blood work (I asked for it). I had tried to get an appt yesterday for the otologist and the steroid injections--something the ENT said was fairly urgent-- but was hitting obstacles. At the ENT's office, his nurse said he was already gone for the day and was probably in surgery. Though she was very nice, she didn't understand the obstacles or the urgency, and I couldn't email him myself. I finally said, "I really have to talk to him. There's no way to fix this without his direct help." Right then I turned around and there he was! She was laughing, because he never comes back once he's gone.

He got on the phone with the otologist's nurse and is trying to get me in next Friday-- the only day the guy is in.

I did get to talk to him a bit and ask him more about this. He said it doesn't look at all like Wegs. I asked him about Meniere's, since everything I've seen said the vertigo only lasts 24 hrs. He said that's not accurate, that it could be Meniere's. Only time will tell. The fact that it's resolving gradually means it's most likely the viral labrynthitis.

It does reinforce how much we really need a rheumy to oversee our care. He's totally lost when I ask about the joint pain, pred dose, etc.... He admits it and keeps asking "When is Dr Seo coming back?" :D

Sangye
07-31-2010, 09:31 AM
I do want to ask you guys who have ear involvement, though.... I don't have ear pain with this and the ENT says my ears don't have fluid like they would with Wegs. But ever since I got off the major pred they feel full a lot and pop, especially the affected ear, and especially in the morning. What say you?

elephant
07-31-2010, 11:03 AM
I had the same symptom Sangye, ear felt full and uncomfortable, that is when I increased my prednisone to 10 a few months ago. Now after 8 mg the ear is better. Wait in see.
Sangye try sleeping a little upright and see if there is a difference in the morning.

Lola
07-31-2010, 01:45 PM
I have very mixed feelings about my ear involvement. My left ear has felt full of fluid for months now. Even after my initial round of rituxan, my left ear hurt. That pain has gradually lessened, but the feeling of fullness has increased and extends to my other ear. The left ear drum is bulging.

The diagnosis is viral labyrinthitis. I don't think I really buy that. i think it's the Wegs. Although, the prednisone 20mg didn't really affect this problem, either.

Here's something that nags at me. Is this inflammation? I am suppose to be in remission.
Sangye, why are your lower legs still inflammed? the swelling. Shouldn't that be gone if the Rituxan infusions were successful? Will some form of inflammation always be present?

pberggren1
07-31-2010, 02:12 PM
Sangye, what is Viral Labyrinthitis? Is it a viral infection inside the cochlea?

I know that when I swallow sometimes I get a popping or gurgling feeling in my right ear. My ENT said that is your eustatian tube working. He said the muscles used for swallowing are right by the tubes. He said it is normal. But the fullness I never asked him about yet. I have severe hearing loss in my right ear and it always feels full. So I am not sure if it is the hearing loss that makes it feel full or if it is full most of the time.

DEE
07-31-2010, 03:27 PM
Phil before i had hearing aid fitted for lose of hearing in my left ear mine used to feel full and with the sensation that you get when you get water in your ear DEEx

pberggren1
07-31-2010, 04:14 PM
Mine is still like that at times, but very rare.

Jack
07-31-2010, 06:19 PM
I know that my problems are due to fluid because they gurgle and pop at times and I am sometimes able to restore my hearing for a few moments by tilting my head to one side.

DEE
07-31-2010, 08:02 PM
yep thats what i mean Jack DEE x

Sangye
07-31-2010, 11:00 PM
I have very mixed feelings about my ear involvement. My left ear has felt full of fluid for months now. Even after my initial round of rituxan, my left ear hurt. That pain has gradually lessened, but the feeling of fullness has increased and extends to my other ear. The left ear drum is bulging.

The diagnosis is viral labyrinthitis. I don't think I really buy that. i think it's the Wegs. Although, the prednisone 20mg didn't really affect this problem, either.

Here's something that nags at me. Is this inflammation? I am suppose to be in remission.
Sangye, why are your lower legs still inflammed? the swelling. Shouldn't that be gone if the Rituxan infusions were successful? Will some form of inflammation always be present?
Lola, is your balance affected? I don't see how it can be viral labryinthitis unless you do, but I don't know that for sure.

Regarding my lower extremities (it's from the hips down) swelling, I'm leaning more to a hypothesis that it's an adrenal thing. Adrenal weakness can cause swelling. Pred depletes the adrenals, and mine are in bad shape from the early days of high dose treatment. I know that for a fact. I think that going on the high doses this month temporarily boosted my adrenals so much that the swelling vanished. Had I stayed on them for longer though--past the 3 week mark where the adrenals shut down--the adrenal-depletion caused by pred would have become more of a factor and the swelling would have returned.

But really I have no idea. :D

elephant
07-31-2010, 11:01 PM
Guys I had all that, and the only way for "me" to keep it under wraps was increasing my prednisone. I think it could be many factors to the feeling fullness: infection, active WG, viral, or damage. It took over a year for my fullness of my ears to kinda go away ( 90 % went away). Oct of 09 I dropped my prednisone to 5 mg and that is when my fullness came back, so I bumped it up to 10 mg per ENT and that did the trick....then stayed on that for two months and slowly got down to 7 in June 2010. Now back on 8 mg because of increase sinus issues...need to figure this out.

JanW
07-31-2010, 11:25 PM
Merkel from Boston says hearing problems are severely unappreciated by clinicians as a devastating effect of wg and other vasculitides. Says more research should be done. It is clear at the conference that hearing impairment is fairly routine - no one can hear anyone very well it seems and there are more hearing aids than canes (and there are several canes).

Sangye
07-31-2010, 11:28 PM
Merkel from Boston says hearing problems are severely unappreciated by clinicians as a devastating effect of wg and other vasculitides. Says more research should be done. It is clear at the conference that hearing impairment is fairly routine - no one can hear anyone very well it seems and there are more hearing aids than canes (and there are several canes).
This breaks my heart. Dr Seo has talked about how devastating hearing loss is to Weggies because it isolates and restricts them even more. :(

Jan, I'm LOVING your updates. Makes me feel like I'm there. Thank you! :)

elephant
07-31-2010, 11:30 PM
Jan is it 430 am there? Thanks again JanW!

Sangye
07-31-2010, 11:40 PM
LOL-- Elephant, assuming you and I are both on the same East Coast, it would be 6:30 am in California. Our reporter JanW is on the scene! :D

elephant
08-01-2010, 02:16 AM
LOL actually on rolling on the floor. Good for JanW, I bet she is taking great notes! The writer that she is. :)

Sangye
08-01-2010, 02:19 AM
Yeah, I was thinking how incredibly lucky we are that of all members, a journalist is at the Symposium! We're guaranteed to get tons of accurate info and comments. And, she's not on pred so she has her memory intact. :D I can't imagine if I was the one there instead.... LOL

Lola
08-01-2010, 02:22 AM
Lola, is your balance affected? I don't see how it can be viral labryinthitis unless you do, but I don't know that for sure. :D

I really do not think mine is viral. I had my first episode of severe vertigo in 1990 when I was "diagnosed" with Rheumatoid arthritis - because my R Factor was elevated. That's when the tinnitus started and has never left me. I also had what i thought was so-called walking pneumonia, along with other symptoms. I am sure that was my first illness with WG.

Interesting theory about your leg edema, Sangye - it sounds perfectly plausible. This idea is more soothing to me than if you were having continued inflammation. I would hate to think that these medication regimes have not been effective.

Jack
08-01-2010, 02:33 AM
It is interesting to hear that many people with the apparent problem of fluid in the ear are able to relieve it with additional Pred. This is the situation I am in too, but it is not the answer because I'm already taking 10mg and suffering from nearly all the side effects. I wonder if any research is being done into this?

elephant
08-01-2010, 04:09 AM
I was wondering do you increase the cellcept to get rid of the fluid? Or any other immunosuppresant.

Sangye
08-01-2010, 04:16 AM
When I was discussing Wegs ear involvement with my ENT yesterday, he said he'd put tubes in the ears if they were full of fluid all the time due to Wegs.

Jack
08-01-2010, 04:24 AM
This was proposed by my ENT, but when they did the risk / benefit assessment before the operation, I failed spectacularly! Compared to some of the other stuff I put up with, the slight hearing loss and tinnitus are no big deal.

JanW
08-01-2010, 03:02 PM
Sangye is echoing Lebovics here. My understanding is that pred can be used to determine whether your loss is inflammatory in nature. 3 day course at 40 mg should yield significant improvement and if not, seek answers beyond inflammation.

Sangye
08-03-2010, 12:19 AM
I woke up with a splitting headache today. I'm concerned that it may be the elevated intracranial pressure problem acting up but can't tell yet. I may wind up having to get to JHU if it does look like that's the culprit. And if it is, they'd have to admit me to treat it. I'm just telling you guys in case I disappear for a few days.

Hammy8241
08-03-2010, 12:40 AM
I woke up with a splitting headache today. I'm concerned that it may be the elevated intracranial pressure problem acting up but can't tell yet. I may wind up having to get to JHU if it does look like that's the culprit. And if it is, they'd have to admit me to treat it. I'm just telling you guys in case I disappear for a few days.

Hey babe, just take it easy and have a bit of a 'me' day. Do what you would like to do rather than what you should do......go on be naughty!

DEE
08-03-2010, 01:47 AM
Thank you DEE x
Sangye i hope things are ok with you
please take care DEE x

Jack
08-03-2010, 02:02 AM
Sorry to hear that Sangye. It never gives you a day off at the moment does it? :(

elephant
08-03-2010, 02:08 AM
Sangye get that checked out soon. Anytime you have a huge severe headache it is telling you something, esp with all the crap that is going on with you.

JanW
08-03-2010, 02:59 AM
Feel better, Sangye. By the way, someone was asking after your health on the Yahoo boards. Someone else answered that you were doing well under the care of Dr. Seo. I take it you used to go by a different name back then.

pberggren1
08-03-2010, 03:29 AM
You will survive Sangye!

Hammy, you never surprise me!

Sangye
08-03-2010, 03:59 AM
Thanks, guys. I've got an email into Dr Seo.

JanW, I used the same name in the Yahoo group. It's nice of them to ask about me--thanks for letting them know.

Sangye
08-05-2010, 12:31 PM
Whew-- super long day at JHU today. Hopping between campuses was exhausting....

The otologist was sure a great doc. Compassionate, kind, took a lot of time to explain everything. He isn't even in clinic on Wednesdays--came in just for me. He wouldn't let me thank him for it, saying "Hearing loss is a medical emergency." So he did the steroid injections into my ear. It's actually a minor surgery. I got to watch it on the tv-- way cool, but still a little creepy. I have to repeat it in a week, and if it's working well, we'll do a third one the following week.

It's trial and error if it'll work, but I was an excellent candidate for it and it gives me every chance to restore my hearing. And, it might help with the vertigo. Sweet!

When discussing the risks, he noted several of them that have never occurred among the JHU otologists who do this. They do 20-50 a week! I mention this, because if you're going to have it done you should be extremely careful with who you get to do it. He emphasized this.

I'm also going to do Vestibular Physical Therapy at JHU. He said it's hard but very good at restoring balance and getting the brain to adapt to vertigo. Again, he wanted to give me every possible chance to recover. He said balance is like a 6th sense-- you only notice it when it's gone. I can sure attest to that.

So that was all good. In the morning I had an awful conversation with my neuro-opthalmologist. Clearly his receptionist told him I was nasty or something, because he was downright rude to me. He said I needed to wait in line for the next appt, and that if I felt it was more urgent I should go to the ER. I said the ER is only going to do a spinal tap, and since I'm on blood thinners they'd have to stop those, etc... I'd have to be admitted. He had told me in the past that if there is chronic increased intracranial pressure that the optic nerve can become permanently damaged. But today he said it can wait. Huh. Maybe they're all sniffing glue in his department this week.

Hammy8241
08-05-2010, 06:37 PM
What sort of time delay is there is seeing any improvement re the injections Sangye?

elephant
08-05-2010, 07:51 PM
Sangye hope you feel some improvement. Wow that is awful to hear that from your neuro eye doc! They all were sniffing glue and had irritable bowel syndrome!

Sangye
08-05-2010, 10:45 PM
What sort of time delay is there is seeing any improvement re the injections Sangye?
They can't say for sure, but they put the 3rd treatment on hold to see if the first two have helped.

Sangye
08-05-2010, 11:07 PM
Okay. Well, it's Weggie Land and in Weggie Land the ride changes every day.....

I just got an email from Dr Seo. I had emailed about all my symptoms from the past few weeks. Many of them have been Wegs symptoms and have had me a bit concerned. I figured at worst I'd have to do a rtx round or go back on Cellcept.

My labs look great. He feels the symptoms I'm having are due to the fast pred taper I had to do recently. (To treat the sudden hearing loss, I was at 40-60mg for 2 wks, then a 1-week taper down to my usual 3mg) The fast taper was fine for someone without the issues I have, since it was over within 3 weeks. I agree that it caused the trouble-- from legs swelling, to (now) huge fluid retention, to signs of increased intracranial pressure, to Wegs symptoms. All of these can be fired up by a sudden drop in pred.

He wants me back on 30 mg pred for a month and then taper slowly from there. I don't know what that taper will look like yet. I check back in a month. He thinks the 30mg will have me feeling good again.

I'm actually quite happy to do this. I've been way off and it's troubling. I can't get the fluid off my legs even with increasing the lasix. And for some reason lasix always makes one of my kidneys hurt like heck, so the more we increase it the more pain I'm in.

I'll call the otologist to see if we still need to do the remaining ear injections, since those are meant to substitute for high doses of oral pred.

Isn't it funny? Just 2 months ago I was in his office crying my head off because I had to stay on 3 mg for 6 months before trying to taper off again. And here I am today, relieved to go back on 30 mg. NOW who's been sniffing glue? :D

Brooke
08-05-2010, 11:21 PM
I hope you feel better soon Sangye and I hope the 30mg steroids get you feeling good. Sorry you had a bad experience with the neuro-opthalmologist, is there someone else you can see?
What dose of lasix were you on? I am on 20mg, my primary doctor put me on that. I don't think my Mayo doc knows that I am taking it, I should probably let her know huh?

Hammy8241
08-05-2010, 11:48 PM
WG seems to be a bit like snakes & ladders!

Welcome to the 30gm brigade and may you not be here for long.

JanW
08-06-2010, 12:23 AM
Yes Brooke, your wegs doc should know that.

Sangye: hope you are feeling better soon.

elephant
08-06-2010, 12:28 AM
Sangye, well when your not feeling good, you do almost anything to get back to kinda normal. I think that the 30 will help, and you will slowly get off it. Hang in there.

Sangye
08-06-2010, 12:37 AM
I hope you feel better soon Sangye and I hope the 30mg steroids get you feeling good. Sorry you had a bad experience with the neuro-opthalmologist, is there someone else you can see?
Nope, he's the one who specializes in what I've got. I'll sort it out with him when I see him in 3 weeks. And if not, I hardly ever have to see him so I can deal with it.


What dose of lasix were you on? I am on 20mg, my primary doctor put me on that. I don't think my Mayo doc knows that I am taking it, I should probably let her know huh?
It's been going up for months. For many months I just needed 20 mg once or twice a week. Then it was 20 mg daily to get the same effect. Now it's 40 mg twice a day and it's not pulling off the fluid. I've got at least 10 lbs of fluid on me right now, increasing by the day.

Definitely let your Mayo doc know every drug you take. They can't figure out what's going on if they don't have all the facts. If Dr Seo didn't know I was on lasix, he might have put me on it instead of seeing that the issue was the steroid taper.

pberggren1
08-06-2010, 03:34 AM
Nope, he's the one who specializes in what I've got. I'll sort it out with him when I see him in 3 weeks. And if not, I hardly ever have to see him so I can deal with it.


It's been going up for months. For many months I just needed 20 mg once or twice a week. Then it was 20 mg daily to get the same effect. Now it's 40 mg twice a day and it's not pulling off the fluid. I've got at least 10 lbs of fluid on me right now, increasing by the day.

Definitely let your Mayo doc know every drug you take. They can't figure out what's going on if they don't have all the facts. If Dr Seo didn't know I was on lasix, he might have put me on it instead of seeing that the issue was the steroid taper.

So I don't have to come down there Sangye and have words with your neuro-optha at JHU then? ha ha.

Jack
08-06-2010, 04:38 AM
So I don't have to come down there Sangye and have words with your neuro-optha at JHU then? ha ha.
Pred fuelled fighting spirit! ;)

Sangye
08-06-2010, 05:57 AM
LOL-- No no Phil! Put the rope away.... :D :D :D

DEE
08-06-2010, 06:24 AM
Ssngye hope you feel better soon think im playing the preds snakes and ladders game to :)
keep through the dice we will get there take care DEe x

pberggren1
08-07-2010, 03:32 AM
I don't have any ropes left so now I just use chains!

Sangye
08-07-2010, 12:27 PM
When I was on ctx again last summer I noticed a lot of ringing in my ears each night. It got a little better once I stopped the ctx, but it persisted. Dr Seo had said ctx wasn't ototoxic (damaging to ears), but my hematologist/oncologist said it could be. This week I asked the otologist and he said it definitely is. He said most chemo drugs are ototoxic, including imuran and mtx. There are so many of us with tinnitus but no other ear involvement-- makes me wonder how much is due to the drugs. There's nothing we can do about it, but it might answer someone's question!

Jack
08-07-2010, 06:06 PM
That is an interesting observation Sangye. I'm sure there are a lot of effects of both the disease and drugs which are not fully documented.

DEE
08-07-2010, 06:38 PM
Sangye i have tinnitus and lost of hearing in my left ear hence hearing aid but have had very little ear problems other than an occasional ear infection and as you now have been on ctx for a long time DEEx

elephant
08-07-2010, 09:58 PM
I had ringing in my ears since I was 15, I have always been on prescription medicine ...I agree with Sangye.

pberggren1
08-08-2010, 05:20 AM
3 of the ENTs I have seen in the past have said that the Methotrexate I was taking could have easily caused some of my hearing loss or even all of it. I will ask my new ENT about this.

jola57
08-08-2010, 08:17 AM
Phil, I lost my hearing and got tinnitus long before mtx, it was during low pred and 150 cyclo so I think that this is just part of wegs

Sangye
08-08-2010, 08:29 AM
Ughhh, I have another splitting headache! This is the 3rd one in less than 2 weeks. I don't get headaches like this. I'm also really weak just doing ordinary things like vacuuming my tiny basement. I'm going to give it another couple of days, and if things don't turn around I'm going to email Dr Seo and ask for help again. Something is off.

jola57
08-08-2010, 08:37 AM
Sangye, I do hope it is not a flare. You realy need some time off of this rollercoaster. Keeping my fingers and toes crossed for you.

elephant
08-08-2010, 08:39 AM
Sorry to hear that Sangye. When did you increase the prednisone?

Sangye
08-08-2010, 08:44 AM
This is my 3rd day at 30 mg. The headache is the same exact kind I've been having even before I increased it. Each time it's lasted for over 24 hrs. :(

elephant
08-08-2010, 08:46 AM
Oh man, that is too bad. Glad you will be emailing your doctor.

Sangye
08-08-2010, 08:48 AM
Yeah, I don't think this is a sinus headache. I am having some post-nasal drip, but tapping my sinuses doesn't hurt. My eyes are bulging and are really painful. Neck is really stiff, too.

jola57
08-08-2010, 08:48 AM
Oh dear, I didn't realize you were up to that much again. I assume it was greatly needed. As lways I feel so powerless when there is nothing I can do to help. Many soft hugs to you Sangye.

elephant
08-08-2010, 08:50 AM
Sangye can you put your chin to your chest?

Sangye
08-08-2010, 08:50 AM
Thanks, Jolanta. You can look back in this thread to see what's been going on....

Sangye
08-08-2010, 08:52 AM
Sangye can you put your chin to your chest?

Yes, no problem. It's not meningitis. I don't have a fever at all, either.

elephant
08-08-2010, 08:54 AM
Ok, just checking. Sometimes you don't have a fever either....Just keep an eye on it.

Sangye
08-08-2010, 08:56 AM
Thank you, Nurse. There have been many days in-between the headaches so I don't think it's a likely culprit.

jola57
08-08-2010, 08:58 AM
Sangye, I get these splitting headaches for a few days at a time out of nowhere and then they just simply disapear just to come back again. It ususally starts at the base of the scull and then envelopes the whole head. It is the only time I ever take extra strength Tylenol or Advil. It is not like my Migrane headaches, it has a different feel and hurts in different places and I don't get the aura or parasthesis as with a migrane. I can't figure them out and just think that if not related to the medication it is also part of wegs.

Sangye
08-08-2010, 09:00 AM
I've never had this before and 3 of them in 2 weeks is not good. I've had migraines my whole life (but hardly get them anymore) and this isn't a migraine. I've also had sinus headaches years ago and it doesn't feel like them, either.

jola57
08-08-2010, 09:05 AM
Does it start at the base of the skull like mine?

Sangye
08-08-2010, 09:19 AM
No, mine begin at the back of my eyes and then my eyes get really hard, swollen and painful.

I think you're describing suboccipital headaches. They can be caused by a number of things, but the most common is stress.

Jack
08-08-2010, 06:33 PM
When I hear of pain behind the eyes, I immediately think of sinus problems. That is how it all started for me.

Sangye
08-08-2010, 10:22 PM
It's sure hard to tell what's going on. The pain behind the eyes and eyeball pain has been a sign of elevated intracranial pressure in the past.

But I've been having a lot of post-nasal drip, too. Nothing coming out of my nose, neti pot doesn't produce anything, no congestion. But I feel like there's fluid in my sinuses sloshing around. It's been going on since the vertigo and hearing loss began. If it were sinuses, wouldn't they feel better after 4 days on 30 mg pred?? It's worse if anything.

elephant
08-08-2010, 10:38 PM
If it's an infection NO you will not feel better. I was on 60 mg of prednisone when I had the usual sinus infection symptoms ( eye,ear and cheek pain, sometimes the teeth). You have sinus drip. I think you have a sinus infection. Did you rinse your nose Sangye?

Sangye
08-08-2010, 10:42 PM
Yes, I use a neti pot twice a day even though I don't have nose/sinus involvement. Nothing coming out but clear saline. And it doesn't improve the symptoms at all when I do it.

elephant
08-08-2010, 10:45 PM
My little red flag is up, I think it is a infection Sangye. Talk to your doctor soon. Nurse elephant says so! :)

Sangye
08-08-2010, 10:49 PM
If it's an infection, why would the pain come and go so much? The headaches each hit 5-7 days apart. In between I didn't have any pain at all.

elephant
08-08-2010, 11:00 PM
Don't know, but how long have you had the post nasal drip?

Sangye
08-08-2010, 11:04 PM
I think it's been a few weeks. It's hard to tell, because I've been retaining huge amounts of fluid for the past few weeks. That causes the sinuses to swell and drip, too.

elephant
08-08-2010, 11:05 PM
Sangye, ask your ENT to culture inside your nose, even have him look at it. That way you can determine if it is an infection/virus/Wg???
Ok, I will stop playing nurse elephant.

Sangye
08-08-2010, 11:07 PM
LOL-- But nurse, there's nothing in there! Seriously, no boogers at all.... I don't know what he'd culture.