My WG experience

[katwoman]

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]

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]

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]

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]

Can you give us some info about him (Symptoms, test results, etc..)?

[Doug]

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.

[DISNEYLADY]

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]

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!

[DISNEYLADY]

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]

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!