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katwoman
10-31-2009, 12:57 PM
I'll try to be brief, but not really in my nature! Thought I'd share my WG experience hoping it can help others to compare symptoms.
2002/3 this is over a few months: had constant nose bleeds and then constant eye watering, went to doctor who did test and was sending me to Opthamologist as no results from swabs he did. Before I got that appointment, started feeling really sick (throwing up), itching on ankles and then purple spots appeared on my ankles and elbows (went to chemist who said I had flu and run down, spots although unusual, probably just warts she said - even though they were ghastly purple....DO NOT ASK A CHEMIST FOR OPINION is what I have learned). Still feeling sick went to visit brother 8 hours away, first day there, having night sweats, joints swelled up like balloons and could hardly walk (looked like i'd been in the saddle too long). Went to doc about joints, who firstly wrote script out for arthritis, then I showed him spots and he checked my heart (which apparently was racing like i had done a marrathon) - he tore up script and said wouldn't want to kill you know would we....sent to hospital and fortunate enough to get a immunologist who does 1 day a month in ER. Had kidney damage & lungs where white. Spent first 2 weeks being poked and prodded and every aweful test under the sun until come to conclusion of WG, next 4 weeks there, another 3 weeks at my brothers until meds were adjusted before I finally was able to go home (not my home but parents as i was to sick to look after myself)....that was the year that changed my life.

Doug
11-01-2009, 12:43 AM
:)Well, katwoman, you definitely lucked out finding a doctor who recognized the need to send you to an immunologist for additional testing. Do you have a WG specialist (of any specialty, just a doctor with significant experience with weggies)? I think you talked about how you are doing now in another spot, so I won't comment further for now.

Sangye
11-01-2009, 01:15 AM
I love what the doc said after tearing up the script for arthritis. LOL. What a good sense of humor.

Chemists (aka pharmacists in the US) are not good to ask about symptoms, but they're awesome to ask about how the drugs work and what side effects to expect. I've often had docs tell me a drug can't cause a side effect (or maybe not as severe as I'm experiencing it) but a pharmacist will say it's a common side effect.

DISNEYLADY
11-03-2009, 01:02 PM
We feel that my husband's DX isn't all correct and there must be more making him so weak and ill. he cries easily and I try to be the strong one , when for 53 years he was the strong one and a great provider. I feel so helpless and without answers. HELP WE BOTH THINK THEY ARE MISSING SOMETHING.

Sangye
11-03-2009, 02:21 PM
Can you give us some info about him (Symptoms, test results, etc..)?

Doug
11-03-2009, 02:36 PM
The uncertainty you feel, your husband feels could be sufficient to bring on depression, weepiness. For that matter, the simple diagnosis of WG could make him feel helpless. It is pretty overwhelming, even if you maintain a positive attitude. Do tell us more, though. We want to help you however we can.

katwoman
11-04-2009, 07:40 AM
I certainly feel for you and I know its a very hard time for your both, as the others have said if you could provide some symptoms that will help.
When its your loved ones health and wellbeing involved there is no harm in seeking other medical opinions, actually I recommend as I had a Rheumi who was treating me and he was like oh yeah i treat another couple of WG patients, but at the end of the day I was telling him about changing meds (I had been on them 12 months)and then in remission with small flare up I was the one who told him about Bactrim instead as my sinus area was being affected, it was ridiculous - this is my life he is playing with and he doesn't have a handle on my illness then he should be man enough suggest I see another Rheumi....as you can see I get a little fired up...lol! Please suggest your husband go and get some second opinons!

DISNEYLADY
11-04-2009, 01:36 PM
i have typed his past year and just lose it before it is ssent. i'm not very good on the compputer or this site

DISNEYLADY
11-04-2009, 11:18 PM
I have type this twice and lose it before I submit it. I'm never sure how to send this and how much is to much. I'll condense it. He has had fever up to 103.8 5 times since last dec.4.(Feb. May, Aug and Oct). He was hospitalized in Feb with short of breath, clear lungs, ok xray and CT showed pocets of pnuemonia. he has had achillies tendon very inflamed and painful from heel to top of calf. After the other foot had pain and inflamed, than later he had red painful spots in different places at different times on his feet. He also had inflamations in his arms. He felt like a hypochrondiac, and wouldn't go to the docor as often as I wished he would. The fevers, yes we went to dr and A clinic and to ER. Also in Dec. had his scrotum swell and VERY painful, ER!! He has been out of the hospital 10 days after being in for 13 days a very sick man!!! He came home very sick ,RX Predisone And Zvox antiboitic $100 each, (thank God for insurance $36 for all 28). He had 6 Doctors and is seeing 4 in 3 days this week. Infectious Disease doc isn't convinced that it is WG. We are trying to get into a Rheumatologist. He still isn't well, which is very hard on a man that has been healthy and worked hard all his life. We have so many praying for us and a very strong faith and God will see us thru these tough days as we are trying to get the paper work thru to buy a house as we can't travel anymore and sold our rig that we have lived as full time RVers. God bless you all and your struggles from sunny FL

Doug
11-04-2009, 11:30 PM
Gad! I've had that happen, too! Hang in there. Once the diagnosis is settled, the treatments will either make sense or not, will work or will not. Antibiotics won't do a thing for WG, though they may help some allied infection. Problem is, things you describe can be WG-related, look like they are infections, and a doctor may prescribe those antibiotics to deal with something that isn't what he thinks. Sangye and someone else on this site had ulcers related to WG that didn't heal for a long time because the doctors were treating them exactly the opposite of what they should have. Anyway, stay with us, read through the information on WG so you can be an advocate for your husband when you talk with his doctors. First of all, it will help you feel more in control of his situation, and it will help him because WG patients (or whatever he has) really don't have the energy to straighten out their doctors when it's necessary!

Sangye
11-05-2009, 03:01 AM
(Don't worry about writing too much. Sheesh, look at my posts!)

I've had most of the symptoms your husband has/had. (Minus the scrotum swelling-- wrong gender for that one!)

1) What exactly was he hospitalized for this time?

2) Did they say his pneumonia (on CT scan) looked like viral pneumonia, or "atypical?" Did they describe it as "infiltrates?" It's very common to mistake bleeding in the lungs for atypical pneumonia. It's happened to me a lot.

DISNEYLADY
11-05-2009, 04:36 AM
We are having a better day, and just came from the heart surgeon that did the biop. on his glands in his throat. all OK It helps to know others have had similar illnesses. The spot on his kidney that was seen on ultra sound , showed nothing on the CT. All his test come back that he is OK,but now they all say it will take time to recup from the hosp. stay and in bed so long. This he knows from last Feb. when he supposedly had pnumonia. Hope you are have a good day. Hope he is ok tomorrw and FRi. as I go to work at you can guess it. Just a little after retirement job that I love!! He likes to see me go and I'm just a phone call away.

Doug
11-05-2009, 07:13 AM
Disneylady- You are welcome. That is what we are here for. It's a form of community service, I suppose, a volunteer job that we take seriously because people dealing with WG oftentimes are in panic mode when they come to this forum. Reasonably enough!

DISNEYLADY
11-07-2009, 03:11 PM
Hi all our new friends at wiggies . I've been wondering if others have been sob when recovering. My hubby's lungs are clear and his o2 is 98%, but just a short walk and he is out of breath.. So faf no fever, so thankful for that. I just worry about him. Maybe it is just the left over of being in the hospital for 13 days. Thanks to you all

andrew
11-07-2009, 04:18 PM
My hubby's lungs are clear and his o2 is 98%, but just a short walk and he is out of breath..

If he's anything like me he'll get better in time. His body has been through the mill and needs more of everything including good ol' oxygen. That means just a mild amount of exertion will cause SOB. After going through this his body is super-unfit and needs 'training' again to even get through the simplest tasks unscathed :)

Doug
11-07-2009, 07:20 PM
Exactly. I still have some issues with shortness of breath, but that's more fitness now, six years later (almost). Disneylady, you will be witness to what weggies find exasperating sometimes: Your husband will appear "normal" on the outside, but physically, he will be unwell in some real sense of the word. As long as I used a cane, initially, I was a convincing "invalid", I guess, and people would ask if I needed help or exceptions to rules to do my job. Once I could walk a bit of the way without a cane, I was treated as if I were healed, OK, not sick any more. I tried to walk without a cane a long time before I was ready. I'd find myself in situations where I'd get part way to where I was going, but I didn't have the strength or stability to complete the trek. I'm lucky I never fell in those instances. Of course, I would be drenched in sweat by the time I got back to where I left my cane! It takes time to get back into shape after hospitalization. Be patient with your husband. It sounds like he's coming along in good order, but recovery is based to some degree on how much effort the individual puts into exercise, etc. Did you see the entry about the 50 year old weggie who plans to climb Mt. Everest? That's one extreme. The other extreme would be not to exercise or try to walk extended distances. I always said, if you want an invalid, treat a person like one. Attitude during recovery is so critical!

Sangye
11-08-2009, 02:08 AM
Disneylady, lung tissue is pretty delicate stuff. It takes awhile to get the tissue to heal well. Also, ctx is toxic to the lungs (ironically) and often causes sob or a dry cough. Other Wegs drugs can do that also.

Between bed rest, unhappy lungs and possible drug side effects, a temporary decrease in lung function is to be expected. It really helps if he can do some simple breathing exercises throughout the day. These are the same breathing exercises respiratory therapists teach you.

1) Take a long, slow deep breath in. Take as much as you possibly can. Then hold it for 3 seconds. Let it out slowly, as far as you possibly can. Hold it for 3 secs. Repeat a couple rounds.

2) Do the same thing, but use a fast deep breath instead of a slow one. (Don't overdo this one or do it too forcefully. You don't need to bust a spleen for it to work! :D )

3) Do #1 and #2 without the 3 sec pause.

DISNEYLADY
11-08-2009, 05:26 AM
AGAIN, THANKS, tHIS MORNING i THOUGHT HE WOULD SEND ME CRAZY. WE ARE IN THE PROCESS OF MOVING, AND JUST BECAUSE HE GOT THE KEY HE THOUGHT WE COULD JUST GET LOADED AND MOVE. WE HAVE A REALTOR IN THE MIDDLE ANDSHE HAS TO COVER HER BUT, AS FAR AS RIGHT TO OCCUPANCY. WELL IT'S 1 AND WE HAVE A LOAD OVER THERE AND ALL PAPERS ARE SIGNED AND MONDAY WE TAKE OVER EVERYTHING, AND IT IS OOURS. I'M SO HAPPY FOR THE OWNER WHO LET US RENT UNTIL CLOSING. HOPEFULLY THIS WILL TAKE A WEIGHT OFF MY DEAR HUBBY AND HE CAN LET US MOVERS AND CLEANERS DO WHAT WE MUST.
HE GETS SO IMPATIENT, AND I CAN UNDERSTAND AS I WAS LAID UP FOR A YEAR AFTER BACK SURGERY. I JUST NEED HIM TO HAVE DO. HE HAS ONE OF THOSE BREATHING MACHINES FROM THE HOSPITAL AND HE HAS GREATLY INCREASED IN CAPACITY, I'M ALWAYS CONCERNED THAT HE WILL PUSH HIMSELF TO MUCH AND WIND UP BACK IN THE HOSPITAL WITH A RELAPSE. tHANKS ALL FOR YOU ADVICE AND ENCOURAGEMENT. SMILES AND SUNSHINE TO ALL

Doug
11-08-2009, 06:48 AM
HE GETS SO IMPATIENT, AND I CAN UNDERSTAND AS I WAS LAID UP FOR A YEAR AFTER BACK SURGERY. I JUST NEED HIM TO HAVE DO. HE HAS ONE OF THOSE BREATHING MACHINES FROM THE HOSPITAL AND HE HAS GREATLY INCREASED IN CAPACITY, I'M ALWAYS CONCERNED THAT HE WILL PUSH HIMSELF TO MUCH AND WIND UP BACK IN THE HOSPITAL WITH A RELAPSE. tHANKS ALL FOR YOU ADVICE AND ENCOURAGEMENT. SMILES AND SUNSHINE TO ALL

That's a reasonable concern. Watch how he responds to exertion, and you can help him out by being a nag, if that's what it takes, to keep him from overdoing things. On the other hand- it's seems complex!- let him find his limits. Like any exercise, you have to take things a bit beyond comfortable for there to bea positive effect. Keep in mind that creatinine is a waste product of exercise, so, before he has appointments where that might be measured in his urine, that he not run any footraces the day before. You know the sorts of exercise he might do, so just keep those things in mind.

katwoman
11-12-2009, 08:00 AM
I used to be on the ball you know and was so good at my job, but these days its just fog, I am forgetful and indecisive and by early affternoon its ridiculous if you didn't know me you'd probably think I'd had a few drinks - I hate being like this!

I don't even know when I got ill, thats how bad my brain is these days, not sure if anyone experiences the same thing - here I am saying I was sick 02/03 and it wasn't then at all I wasn't diagnosed May 2005, even had to go and get all my hospital paperwork to confirm.

I think the reason I have 2003 in my head is a I went to Africa in 2003 and when I landed in hospital my poor parents were asked by so many people did I pick something up in Africa (oh yeah two years later) - they had to explain it was autoimmune (for people to get it they explained like 'lupus' - not something you catch. Seemed to be the easist way for people to get it otherwise they still thought I caught autoimmune disease) - now I just tell them to 'google'.

Went to doc yesterday and she has taken a heap of blood work (including ANCA) and I see her Tuesday for results. As mentioned on other threads she has no idea, I got another referral to see ENT and she suggested my system maybe used to Bactrim - does this happen?

Anyway, my bosses wife is currently down in Sydney seeing a specialist at one of the major hospitals, she is also sussing out someone I can see - she has always been really good and supportive, which you need when you are juggling WG and trying to hold down a job, which currently is a struggle to keep working fulltime, although I only do 9-4.30.

DISNEYLADY
11-20-2009, 10:32 AM
Katwoman, I just noticed that you just joined in Oct.2009, me too. My hubby use to have a lot on the ball like you, but now has some bad days. He gets very impatient, with life and not being able to do things like he use to. and to top this off we moved in the past 2 weeks and many things that were simple to solve were magnified and very stressful for him. This just makes him feel worse and the next day he sleeps a lot. We are not sure when he became ill, but I know illnesses realy took off over a year ago. I think he finds his brain doesn't function like he thinks it should, and like you many don't understand the illness, and many ways we don't either. I know we have to get him into some other docs that know more about his feelings and about WG.
Do you know that Andrew our Administrator, for this system lives in Canberra , Australia?? He has been a great help to me in learning how to use the support group. Funny I don't know how I ever found it and got on line.
Hope your bosses' wife finds something out for you in Sidney> Keep us posted on how you are doing and feeling. What meds are you on. My hubby isn't taking anything for the wiggies.
you are doing great for what you have to live with and I hope this form helps you like they have me.

katwoman
11-20-2009, 05:11 PM
Disneylady, thank you for your kind words, I am sorry to hear your husband is also dealing with WG....I'm only 36 and it has really knocked me for a six! I can understand your husbands frustration with memory and stress, I don't handle stressful situations at all anymore, just go into melt down (my poor boss has seen me shed too many tears over trivial things).

Andrew has been wonderful and has got me the name of an Immunologist who has WG experience, which my doctor has done a referral for and I am waiting to hear from his clinic about an appointment, its only about 2 1/2 away from me so even better then sydney.

In 2008 had a minor flare (just affecting my sinus area) so the only meds I have been on is Bactrim, which now doesn't seem to be doing much, so will be interested to see what Immunologist has to say, as like many WG's I hate the thought of going back on Pred's, so my fingers are crossed.

Give my regards to your husband and I shall keep in touch, please keep us up to date on your husband and it sounds like you are a wonderful support for him.
Kat

Sangye
11-20-2009, 09:42 PM
Many people don't know it, but depression can cause memory problems. Pred does, too, and pred also can cause depression and tearfulness. Sometimes it takes a very experienced psychiatrist to sort out what it pred, what is grieving due to Wegs, what is sheer physical exhaustion manifesting as emotional exhaustion, and what is depression. They're all tied together, each one worsening the other.

Doug
11-21-2009, 09:36 AM
Yes, the strongest of us, if honest with the weggies on this site, will note that tears and stress that collapses us into a pool of self-doubt and inaction are part of what your deal with. I didn't have the tears so much, but the inaction and inability to deal with stressful matters definitely happened to me, katwoman!

I'm looking forward to hearing what you hear from your immunologist. It sounds like you have the same situation I do: any doctor truly qualified to treat me is at least an hour's drive away, and at most only 4-1/2 hours!

katwoman
11-21-2009, 05:19 PM
Doug, it is so good to find this website and know that I'm not alone and finally people that not only can relate, but understand!!

I am eagerly waiting to hear from the immunologist clinic regarding an appointment. I have some good friends who have offered to drive me to the appointment and so the 2 1/2 hr trip each way will be a lot less stressful....lol I constantly consider situations by there stress factors!

Jack
11-21-2009, 06:17 PM
As I've posted in the past, I've changed from the "nothing can defeat me" sort to someone who gets stressed when they have a few things that need sorting out. I can also cry at the drop of a hat given an emotional situation.

Sangye
11-22-2009, 01:50 AM
Kat, I do the same thing. I call ahead to ask about walking distance between the parking lot and offices, etc.... Once I'm inside a place, my eye automatically starts searching for the nearest chair for when I need to sit down quickly. I'm constantly conserving my resources.

If I stand at the reception desk to fill out a form, I won't have the strength to walk back to the exam room. If I walk part of the grocery store instead of taking the electric cart, I won't have enough energy to get back in my house!

This daily evaluation of everything can be exhausting, especially for newly-diagnosed. I've internalized it so I probably don't even realize how much mental energy it takes.

It's something that people without chronic illness can't possibly understand. They just get up, walk across the room or stand to chat, etc... without giving a moment's thought to if they'll have energy for the next little activity. On the flipside, I'm grateful for it. I appreciate the ability to do anything and really rejoice when I make progress.

elephant
11-22-2009, 05:42 AM
After my lung surgery ( lung nodule removed), I had no energy for about a month. It took about three months to feel normal. It was one of the most painful surgeries I ever had. I had alot of surgeries...but this really knocked me off my feet. I would walk in the gorcery store and start to feel short of breath and dizzy and think, "how am I going to make it thru the store." The problem was I pushed myself too fast and realized I needed to slow down. It's a shocker to go from energy to no energy!:rolleyes: