Scleroderma

Larry Stollman · 01-06-2003, 12:43 PM

My wife has recently been diagnosed with scleroderma.
The doctor is down playing the disease. Her ANA went from 400 to 600. What does this mean if anything? Her blood pressure has raised. Are muscle pains and digestive problems part of the disease?

sandy b · 01-18-2003, 05:10 AM

Hi, I'm glad to see a husband who wants to know whats going on. I have scleroderma overlapping with lupus and dermatomotosis. Scleroderma can affect skin, organs, just about anything. My blood pressure went up when I had problems with my kidneys. I hope she has a good doctor. Read as much as you can and research whatever you can find. I've dealt with this for over 30 years now and alot of times doctors aren't up on everything. I take lots of antidepressants, pain meds, muscle relaxers, and xanax. Every 3 months I take steroids for 7 days.(I've been waiting for a rheumy referral for over a year) My ana is usally around 300 but has been as high as 10,000. I was very ill then. Doctors usually go by your ana to gauge the disease but you can't always go by that. I felt fine when mine was 1200 once. Just be supportive and question the doctor if you don't agree or understand. It seems you have to see a specialist for every thing that goes wrong. I just lost a friend on New Years Eve. She had been waiting for a heart/lung transplant for 6 months. She had gone undiagnosed for years. The doctor kept stretching her throat because she had a hard time swallowing. Hope this helps. Best of luck.

silverwill · 01-23-2003, 10:20 AM

Ok, here's my question. I know scleroderma can affect the organs--but can it have a profound effect on the brain & sanity? I know a retired 60 year old lady who has the disease and she's a psychopath. What's worse is that she's still licenced to carry concealed weapons, she owns a few, she's severely paranoid, and isn't afraid to shoot 1st & ask questions later. she's still licenced & registered as a nurse, and she does work on people from time to time. She's also convinced that I'm her daughter, & can't comprehend or remember anything I say to her.
I want to know if it's just her or if it's a result of the condition.
Either way, is there a way I could have them take some of these priviliges away from her. She almost shot me one evening when I knocked on her door!

clover91 · 01-31-2003, 01:53 PM

I had an Aunt who was diagnosed with this disease at 35 and died at 39. For 5 years they could not figure out what was wrong with her. She was misdiagnosed more times than I can count on one hand. She had problems with her skin and organs but no mental problems. She was very happy and active until the very end. They knew that they had caught it too late to do anything for her but they still tried. Never settle for one opinion, or even two opinions. This disease is rare and hard to find information on so make sure you find a good specialist.

clover91 · 01-31-2003, 01:54 PM

I had an Aunt who was diagnosed with this disease at 35 and died at 39. For 5 years they could not figure out what was wrong with her. She was misdiagnosed more times than I can count on one hand. She had problems with her skin and organs but no mental problems. She was very happy and active until the very end. They knew that they had caught it too late to do anything for her but they still tried. Never settle for one opinion, or even two opinions. This disease is rare and hard to find information on so make sure you find a good specialist.