PDA

View Full Version : Hi! I'm new :)



ArlaMo
05-13-2010, 12:27 AM
Morning everyone! I'm Michelle, aka ArlaMo on the internet, and I was recently diagnosed with Wegener's (April 2010) and spent several hours yesterday reading through lots of great information here.

My journey started back in October of last year - got a cold that just wouldn't quit. Before that cold, I was one who never got sick, never went to the doctor my entire life. After a few weeks with no improvement, we tried antibiotics, looked at me having some adult-onset allergies and tried meds for that, tried more antibiotics. Then, I developed the earaches from h-e-double toothpicks (while on the antibiotics) and we got an ENT involved. He's awesome, but was trying to treat the symptoms. Lost my hearing almost completely, ended up with tubes in both ears. Had sinus x-rays, head CT, lung CT (all negative.) Still had the cold, developed a never-ending cough and then Bells-Palsy on the left side of my face. Tried high powered antibiotics, including some injections and we thought we saw some improvement, but then the joint pain started. Could hardly move or walk - got cortisone injections in the major joints which actually helped a lot with the pain.

All along, my sweet husband knew something more was going on but nobody could figure it out. Then, one morning I woke up and had all these weird red lines under my fingernails - splinter hemorrhages. This finally clicked with my husband (he's an ortho) and he remembered these being related to carditis or ??. Talked to a new doctor (internal med) and he immediately knew it was Wegener's after hearing my history. Did the blood work and confirmed it the next day.

We live in a pretty small town, so no rheumatologist anywhere close by - I drive 3 1/2 hours to Arthritis Northwest in Spokane to see a doc up there, right now once a month. Getting labs every two weeks and trying to get into the nephrologist here in town (booked out til August) because I have kidney involvement.

I'm on 200mg cytoxin (upped from 150 because my creatinine spiked) and 60mg pred. Bactrim 3x week, plus the fosomax once a week. I'm about 6 weeks into the treatment. The joint paint is much less, though my left foot is numb on the bottom - actually it feels more like I sat on it for a couple days and is all pins and needles. Most of my hearing has returned, but the audiologist thinks there is some permanent nerve damage and it is definitely not what it used to be. Bells Palsy resolved, the cough has almost gone away, and the nasal congestion is much better, though I get the gross crusties that need to be cleared out almost every morning.

As for me, I'm a SAHM to 6 great kids. My oldest will be a senior next year and my youngest is 3. It has been pretty rough on them. My husband is an ortho - we just finished our 17 year journey through masters, med school, internship, residency, fellowship last year. Thank goodness this didn't start til we were through with all that!

I love music, singing and got a cello for Christmas - unfortunately, the whole ear thing seems to have ruined what used to be close to perfect pitch and I sound like a frog :o when I try to sing now. My other love is photography, which has also been affected by this darn disease...or at least the meds I'm taking. From reading, it looks like my shaky hands are due to prednisone side effects?? Hard to take good photos now and I really miss it!

Anyway, trying to keep my (double...triple) chin up (oh yeah, got the moon face already) and just looking for more info and support on this journey.

jola57
05-13-2010, 12:56 AM
Hi Michelle, sorry to have to welcome you here but glad you found us. This disease is a silent little mouse, it acts when you least expext it. Don't worry about the shakes, they will go away and you will be able to take great pictures. My husband is an anesthesiologist and I am an immunologist (althougth for 20 years I have been a realtor/manager) and neither one of us thought about WG, we thought polymialgia rheumatica for a few months before a sage old neurologist diagnosed WG. Prettey same symptoms here, but went a little further with the feet, one developed a dropped foot and the right is like yours pins and needles. After cytox and pred I regained use of the left foot but now it is permanently painful and twisted. Actually getting an xray and then cat scan in the next few days, then looking for a good ortho. Any takers LOL. We've practiced now for over 20 years in mission and Abbotsford, say congratulations to your hubby and all the best. You will feel like yourself with a new normal very soon.

ArlaMo
05-13-2010, 01:25 AM
Thanks for the welcome! My husband is actually from BC - born in Tofino. They lived all over growing up - Kimberly, Cranbrook - his parents are now in Chemainus.

My doc always asks about foot drop - I hope we caught it in time to prevent some of the more severe symptoms.

elephant
05-13-2010, 02:03 AM
Welcome Arlamo, you are certainly busy with 6 children. How do you do it being on these meds? Wow! Give it time, some of your symptoms might completely go away. It's a wait and see with this disease and medicines.

ArlaMo
05-13-2010, 03:04 AM
It has been a bit crazy, elephant! My youngest (3) has definitely had way more computer/TV time than I normally allow my children, just so I can catch a nap here and there. The older kids have been pretty good to help, but they are so busy. It is hard to keep up sometimes!

Theresa
05-13-2010, 03:56 AM
Welcome, Michelle! So sorry you have to join this group. I'm pretty new as well. My son was diagnosed in March. I've found lots of great support here already. Sounds like you have your hands full but that you have lots of family support.

elephant
05-13-2010, 04:19 AM
Don't feel bad about the kids watching TV, you need your rest. I had my kids watch TV too. They actually got bored of it and now they play with lego's, barbies....Keep on resting it helps!

Sangye
05-13-2010, 04:36 AM
Hi Michelle, glad you found our group early on. Kudos to your doc for diagnosing you so quickly. Everyone else knows I'm going to nag you to find a Wegs specialist to oversee your care as soon as possible. Even if your current rheumy seems to be on top of things, with this disease you need someone who sees hundreds of Weggies. Also, waiting until August for a neph consult is waaaay too long. You can lose kidneys in a weekend with Wegs. I suggest you contact the VF asap to connect with a Wegs specialist. You'll have to travel to a vasculitis center, but it's much better than just having them consult with your doc. You need the one-on-one relationship with them.

Your foot-drop might clear up entirely or partly, but there's no telling with Wegs.

How on earth you're doing this with 6 kids is a mystery to me. Give yourself a pat on the back for that. :)

Walter Wolynsky
05-13-2010, 05:02 AM
Can you explain Foot Drop to me please. I found your bio interesting...as are all others.

Walter
Thanks for the welcome! My husband is actually from BC - born in Tofino. They lived all over growing up - Kimberly, Cranbrook - his parents are now in Chemainus.

My doc always asks about foot drop - I hope we caught it in time to prevent some of the more severe symptoms.

ArlaMo
05-13-2010, 06:10 AM
Can you explain Foot Drop to me please. I found your bio interesting...as are all others.

Walter

Foot drop happens when there is weakness or paralysis in the front part of the foot - making it hard to step without dragging the toes. If you have it, you would need to life your foot up high to step without drag. I actually don't have it - but the doc asks me about it every time I talk to him, probably because of the numbness on the bottom of my foot.

Orthotics worn in the shoe can help, I think along with a light brace. I'm trying to remember exactly what my husband said. My doc said wrist drop can also be a problem - I'm assuming a very similar physical manifestation where lifting the wrist is difficult/impossible due to weakness in the muscles or nerve issues in the wrist.

pberggren1
05-13-2010, 07:22 AM
Hi Michelle:

Welcome to the group.

My GP is moving to Tofino next month. I also have relatives in Kimberly and Cranbrook. My brother lives in Salmon Arm.

Natalie
05-13-2010, 08:32 AM
Hi There Michelle, gee your first symptoms sound like I was reading a page out of my book !! , glad you have found this site and hope all gos well in the future , It will be a long journey but everything will settle down to the new normal as they call it here :) I too ended up with bells palsy but I didnt diognosed for a while after that .

Natalie
05-13-2010, 09:34 AM
ooh I forgot to mention that I LOVe Photography too :) I suggest a tripod but I bet you already have one . You may be able to experiment with movement you never know what you could come up with :) What do you shoot ?, I love landscapes lightning anything natural :)

ArlaMo
05-13-2010, 09:48 AM
Most of my photography is kids, so a tripod is really hard! Chasing a three year old is hard enough without being attached to an extra three legs! I haven't done much in the way of landscapes, but have tried some macro - definitely have to use a tripod and even a remote shutter with that now.

Did your palsy go away with time? I woke up one morning with it and thought I had had a stroke! Luckily, mine resolved completely.

Natalie
05-13-2010, 10:03 AM
Most of my photography is kids, so a tripod is really hard! Chasing a three year old is hard enough without being attached to an extra three legs! I haven't done much in the way of landscapes, but have tried some macro - definitely have to use a tripod and even a remote shutter with that now.

Did your palsy go away with time? I woke up one morning with it and thought I had had a stroke! Luckily, mine resolved completely. true chasing kiddys with a tripod would be just silly .
exacaly the same as you , I had server ear infections headaches and just woke up with It on my left side and thought I had a stroke too ! was a very scary thing when your 19 . It did go with time . they had to drain my ear drum to relive pressure off the nerves to that side of my face . that didnt tickkle !. I have very low hearing on my left side now but my right makes up for it , I have had some much trouble with my ears over the years ( more in the first half of this disease) just happy that they are at a point that I can forget about them . when you have ear involvement Its all you ever think about and I drives you made well it did me < I spent alot of time alone. it was just to hard to try and have a conversation with anyone .

ArlaMo
05-13-2010, 10:12 AM
Oh, how I know that feeling!! My poor three year old went through some mighty tantrums during the time that I couldn't hear him. Scared me to death to be home with him and not be able to hear anything. I think my older kids gave up on talking to me for awhile - I felt so out of it!

I did the ear drainage thing with the ENT a couple of times. He said it was the worst ear infection he had seen in 10 years...if only we had known what it really was.

My ears bug me - because of the tubes, my hearing doesn't "feel" right. And I can always hear my heart beating and other inner body stuff, it seems.

Natalie
05-13-2010, 11:50 AM
I know what you mean by hearing the beating , im pretty sure this is your blood pumpping , it comes and gos , your ears havent settled yet as you still have a lot going on with your WG and your ears are the least of your problems ATM you do need to get to that doctor ASAP like now . you have to learn one lesson real quick with this disease DONT wait and DONT take no for and answer as it is YOUR Future and Quality of LIFE that is at stake you need to take control ., good luck , and keep us informed.

Doug
05-14-2010, 02:51 AM
I love music, singing and got a cello for Christmas - unfortunately, the whole ear thing seems to have ruined what used to be close to perfect pitch and I sound like a frog :o when I try to sing now. My other love is photography, which has also been affected by this darn disease...or at least the meds I'm taking. From reading, it looks like my shaky hands are due to prednisone side effects?? Hard to take good photos now and I really miss it!

Anyway, trying to keep my (double...triple) chin up (oh yeah, got the moon face already) and just looking for more info and support on this journey.

Michelle - I didn't used to sing well, but once I lost hearing in one ear, I learned I really didn't sing well! Bone conduction filled me in on that fact. In my case, the joyful noise I make is silence when everyone else sings.

jola57
05-15-2010, 03:08 AM
Yes well I'v got a frog inme throat that will not leave so my singing days are over too - well not entirely my car and my shower get quite an earfull

Col 23
05-16-2010, 01:25 AM
Welcome ArlaMo.
Glad you at least got diagnosed correctly. Moon face and weight gain is awful but you learn to live with it. Apparently it all gets better as we get off the meds or taper.
I dont know how you are doing it with 6 kids, well done. Dont feel guilty about anything. Just focus on you as much as possible and learn to ask for help when your exhausted or feeling overwhelmed.
All the best
Col 23