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Neurology (Expert Forum)
Re: Confused and Concerned
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Re: Confused and Concerned
by CCF Neurology MD:NT, Jan 01, 1995 12:00AM
Posted By CCF Neurology MD:NT on July 30, 1998 at 23:06:59:
In Reply to: Confused and Concerned posted by Tim on July 27, 1998 at 17:47:49:
I was recently diagnosed with MG by two neurologists (opinions 1 and 3). My symptoms are minimal and clinically difficult to see, this according to both Drs who made the diagnosis. CT scan of chest and blood immuno test negative; the diagnosis was made on the strength of repetitive nerve stim test. Results were in the 15-22% decrement range after 3 and 5 minute intervals on shoulder, not much more than 7-8% on hand at any strength or interval.
Both agreed that Tensilon (sp?) test not necessary. Am now on 30 mg mestinon x3, with no other treatment. I feel great! They recommending thymectomy ASAP for full possible benefits. I saw another neuro (second opinion) who said clinically he sees no way re MG (I'd be the rarest case he's seen in 40+ years) and is unimpressed with the Harvey-Maslin (sp?) test results. Is inclined to believe it's stress related. (Other Drs diplomatically suggested that he may not be familiar with what to look for in the way of results...)
Questions: Should I have another neuro clinic do the rep nerve stim test over again to be certain, or does your experience show that once is enough (While I don't look forward to that test, it is much less critical than a thymectomy!) If not, or if the 2nd test points clearly to MG, given my age (42) and very good health at this point, are there studies available that may give me some idea of how much this disease might progress and in what time frame? Or am I going to be told by most if not all reputable, MG experienced neuros that the thymectomy is the way to go? Last, even with a thymectomy there's a good possibility that the symptoms could recur and even worsen, correct?
As you may be able to tell I'm not keen on major thoracic surgery...
Dear Tim:
The diagnosis of MG needs to be established (or refuted) with greater certainty. The knowledge that you have it or not is critically important in potential future situations such as possible surgery under general anesthesia, or the use of specific drugs. Also, MG is a very unpredictable and potentially lifethreatening disease, and you would rather know.
There is no formal study demonstrating the efficacy of thymectomy unequivocally; must experts, however, feel that it is probably partially effective.
You need to consult with a neuromuscular expert of some repute in an academic neurology department near you. If you live near Cleveland, I can strongly recommend Drs. Levin, Mitsumoto, or Shields at the Cleveland Clinic (call (800)223-2273 for appointments).
Good luck!
In Reply to: Confused and Concerned posted by Tim on July 27, 1998 at 17:47:49:
I was recently diagnosed with MG by two neurologists (opinions 1 and 3). My symptoms are minimal and clinically difficult to see, this according to both Drs who made the diagnosis. CT scan of chest and blood immuno test negative; the diagnosis was made on the strength of repetitive nerve stim test. Results were in the 15-22% decrement range after 3 and 5 minute intervals on shoulder, not much more than 7-8% on hand at any strength or interval.
Both agreed that Tensilon (sp?) test not necessary. Am now on 30 mg mestinon x3, with no other treatment. I feel great! They recommending thymectomy ASAP for full possible benefits. I saw another neuro (second opinion) who said clinically he sees no way re MG (I'd be the rarest case he's seen in 40+ years) and is unimpressed with the Harvey-Maslin (sp?) test results. Is inclined to believe it's stress related. (Other Drs diplomatically suggested that he may not be familiar with what to look for in the way of results...)
Questions: Should I have another neuro clinic do the rep nerve stim test over again to be certain, or does your experience show that once is enough (While I don't look forward to that test, it is much less critical than a thymectomy!) If not, or if the 2nd test points clearly to MG, given my age (42) and very good health at this point, are there studies available that may give me some idea of how much this disease might progress and in what time frame? Or am I going to be told by most if not all reputable, MG experienced neuros that the thymectomy is the way to go? Last, even with a thymectomy there's a good possibility that the symptoms could recur and even worsen, correct?
As you may be able to tell I'm not keen on major thoracic surgery...
Dear Tim:
The diagnosis of MG needs to be established (or refuted) with greater certainty. The knowledge that you have it or not is critically important in potential future situations such as possible surgery under general anesthesia, or the use of specific drugs. Also, MG is a very unpredictable and potentially lifethreatening disease, and you would rather know.
There is no formal study demonstrating the efficacy of thymectomy unequivocally; must experts, however, feel that it is probably partially effective.
You need to consult with a neuromuscular expert of some repute in an academic neurology department near you. If you live near Cleveland, I can strongly recommend Drs. Levin, Mitsumoto, or Shields at the Cleveland Clinic (call (800)223-2273 for appointments).
Good luck!
