Discussions By Condition: I cannot get a diagnosis.

Result of Meds or Exacerabation

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Tawanda
  • October 20, 2008
  • 05:22 PM

Dx with MS: 1999
(Presented about 15 years prior, but there were difficulties in being diagnosed.)
Present Age: 58
Therapies: Avonex, 2000, 9 months: Discontinued because was never able to tolerate, the effects never lessened;additionally it seemed to not help the MS symptoms. Appropriate monitoring tests performed.
Copaxone, from that time and continuing.
Solumedrol: 2 or 3 sessions over a period of 6 years consisting of 3 day infusion. In 2006, Dr.
prescribed a schedule of monthly IV infusions, a period which last for about 12 months,.

Approximately 3 months after the year long Solumedrol application ended, I experienced episodes of weakness, lasting 5 days to 3 weeks. Specifically these were characterized by body fatigue, headaches, nausea and low body temperature. (My normal body temperature, which in any case has lowered in the past decade, averages at 98. During these episodes, my journal shows that the range lowers to 95.5-97.3. )
I reported these to the Neuro-doc, who referred me back to the GP. She tested thyroid, B-12. Because of an older and persistent complaint involving other but related symptoms (frequent diarrhea, etc.--this she had DX as generally IBS) she also tested for gallbladder abnormalities.

My GP has retired, my Neuro-doc shows little interest in addressing these episodes .I have spent much time reading material I am not qualified to assess. My question is in two parts:
1. Do side effects last well after cessation of therapies and or could the medication alter body functions in a long lasting way? I'm thinking here about the relation of solumedrol and the adrenal glands and or pituitary gland. Indeed, although all my liver monitoring tests came back normal, are there reports of long term effects of Avonex in this regard?
2. Could the MS effect these systems (pituitary gland, for instance), and these be exacerbations?

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3 Replies:

  • Have you ever been tested for Lyme disease? Sounds like you may be having a Herxheimer like reaction to the drugs. Lyme is very commonly misdiagnosed. MS is one of the misdiagnosis among many others.(chronic fatigue, ALS, rheumatoid arthritis, Lupus etc)I would look into it.. I'm not convinced you have MS.
    puddlebug 5 Replies
    • October 28, 2008
    • 08:05 AM
    • 0
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  • Puddlebug,I was dx by way of spinal tap which also checked for a host of other possiblities, Lyme included. As my initial post implies, it took a long while to diagnosis, but this was not because of the present odd symptoms. It was due more to physicians, inadequately listening to my story, unwilling to look beyond the common causes once things didn't improve. Instead I encountered attitudes toward my complaints that were a mixture of blaming the victim and /or suggestions of hypochondria and then later, bemuse observations of menopause. I admit to the menopause, but am not a victim or a fake.I sought diagnosis at two times in the initial course: once at the beginning when I experienced numbness, and then again 15 years later when the symptoms were primarily cognitive. At that time, however, cognitive symptoms were not as generally recognized as they became about 3 years after my diagnosis.One other frustration characterizes my joujrney to diagnosis. My ophthalmologist, bless his heart, was fairly sure I had MS almost a year before the neurologist consented to a spinal tap (the brain MRI was not conclusive. This was based on a curious statistical relationship: that of uveitis, for which I had come to him, and MS. Nobody says MS causes uveitis, but the eye docs know that this condition is oddly common among MS people. But the neuro docs don't read the ophthalmological literature and my neurologist simply put no value in my comment about this. I finally got him on the phone with the eye doctor and after their conversation, plus a flunked evoked potential test (I had also experienced diplopia and probably optic neuritis), he tapped my spine and voila!Like so many other stories we heard, it was a long and frustrating path to diagnosis. What do they say the average number of docs potential MS diagnosed patients must see before getting definitive word: 9? Yes, 9. (I should probably add another tag to this, such as diagnosis or tearing-my-hair-out.)The symptoms I described in the initial post are relatively recent (since my year of solumedrol, about 3 years ago.) They represent the advent of what seems to be another frustrating period. I either get used to the episodes and plan not to be productive while they occur, or I find an answer for them. In the last episode, because I am between GP's,I had to call the neurologist to convince him to order a blood test. This, I felt,was best done during the symptoms, in case thyroid or adrenal glands were insufficient. However, it took me too long to convince him, and when he finally consented, the episode was resolving. The blood test came back normal, but I'm not sure it has any value at all. Perhaps it does. I just don't know.
    Tawanda 1 Replies
    • October 28, 2008
    • 06:34 PM
    • 0
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  • I know of a website where you can email a doctor and he will reply himself to your inquiry. Try him at www.drerniemurakami.com Good luck!
    puddlebug 5 Replies
    • October 29, 2008
    • 07:16 PM
    • 0
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