Discussions By Condition: Medical Stories

Drs say 'I'm complicated'

Posted In: Medical Stories 4 Replies
  • Posted By: Catrinky
  • July 6, 2008
  • 00:33 PM

:eek: Hi, I've been sick for over 6 months. My symptoms: sore joints(in the 1st 3 months)itchy rash/lesions(exacerbated by sun)lesions are located on chest, legs, upper under arm, back, eyes,throat, heart palpatations, shortness of breath(lesions have been seen on esophygus and in voice box). I have had 4 skin biopsies: eczema/unspecified. I will be going off prednisone and will have another biopsy(I'll have to be off for 6 days).
I have been diagnosised with MS for 19 years, and I have tried various MS drugs ie: Avonex, copaxone and Zenapax. The latter is a drug used for kidney transplant patients. It was thought at first I was allergic to Zenapax infusion, my last infusion was in April, so drs are now dismissing allergy. Dermatologist is thinking, I may have developed a blood problem due to Zenapax. Zenapax interupts the working of the t-cells. T-cells are the part of the immune system that turns against the body when you have MS.
I have been on prednisone for 3 months and the rash and other symptoms are controlled, as soon as I go off prednisone rash returns with a vengence, I cant' see because of swelling and it is hard to swollow due to lesions in throat.
I would appreciate any input! Thanks

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4 Replies:

  • hi, I assume you were worked up for lupus? Just wanted to say hang in there, sorry to hear about your troubles. I hate it when the Dr's say complicated. I know they dont know everything but it's frustrating when you don't get answers. Kathy
    katevet 5 Replies Flag this Response
  • Hi KathyThanks for your reply. I have been checked for LUPUS, my ANA is elevated along with some other symptoms. "Dr. Lupus" as they call him in the Boston Hospitals says I don't have lupus I have a drug allergy. I am hoping it is an allergy to Concerta which I have been taking for fatigue with MS.thanks again,Catrinky
    Anonymous 42789 Replies Flag this Response
  • Hi, Get the Drs to test you for Multicentric Reticulohistiocytosis or even Psorisis good luck, hope you can get some answers:o
    mimcorr 7 Replies Flag this Response
  • Please list all drugs you are currently taking including those you have taken in the past six months. I agree many of your symptoms sound medication related- either drug side effects or interactions. Doctors usually don't look at this and it is a growing problem and is a leading cause of death in the US. www.drugs.com or www.rxlist.com are the two websites I use to find out EVERYTHING you need to know about meds and their side effects or interactions. Please don't discount this. I cannot tell you how many horror stories I have of patients who have been overmedicated or who had horrible side effects from medications. And doctors miss this 80% of the time! Best wishesDOM
    acuann 3080 Replies Flag this Response
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