Re: Re: Re: Neuromyopathy or possibly Stiffman Syndrome
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Posted by CCF Neurology MD on September 19, 1997 at 03:31:56:
In Reply to: Re: Re: Neuromyopathy or possibly Stiffman Syndrome posted by Diane Cooper on September 15, 1997 at 13:39:38:
: : What is neuromyopathy? Is it a "catch all" condition or is it a real, bonafide disease? Is it a benign condition or does it progress? My question arises because I have been diagnosed with possible neuromyopathy. My neruologist is running numerous blood tests, one for "stiffman syndrome", just to rule it out. What is Stiffman Syndrome? What causes it? How is it treated? In the meantime I was prescribed Dantrium for symptomatic treatment of cramps (mostly leg) and fasciculations (all over).
: : Background:
: : I am 44 years old. My thryoid was eradicated with radiation over 10 years ago due to Graves Disease. I am under the care of an endocrinologist because I have not been in balance for several months. I see him every six weeks and have blood work prior to each visit for monitoring. My neurologist says neuromyopathy can be related to thyroid disease, I have not seen my endocrionologist since this recent diagnosis--I go next week. I will discuss all of this with him, then.
: : I am hesitant to take Dantrium for an extended period of time because of the side effects associated wtih long term use. Also, I had a total hysterectomy 5 years ago and take estrogen daily. I believe that Dantrium can intefere with the effectiveness of estrogen, can't it?
: : I began having leg and feet cramps over two years ago. The cramping comes on during sleep or resting and is extremely severe. The cramps can last, intermittently, for several hours. They are sporadic and I may go for weeks or even month with only a few, then they will be intense for several weeks or months again. I began having all over fasciculations about 18 months ago.
: : I had an EMG a year ago which was abnormal. The neurologist I was seeing then did not elaborate, he only said that my muscles were making a "purring" noise and they should be silent. He said he would research this as he thought it may be related to my thyroid condition. He never called back and he never returned my calls. Foolishly, I made another appointment and went back to him last week. He felt I was having the same problem as last year-whatever that was-and prescribed Tegretol. I had a violent allergic reaction to it. I have changed doctors.
: : I am seeing an excelent doctor at Emory, here in Atlanta. She performed another EMG which she says was normal. She did see and feel the fasciculations and says all that I describe fits into the neuromyopathy which she feels is related to my thryroid. She said it could be Stiffman Syndrome, but was doubtful of that, as well as myotonia, also doubtful.
: : However, I was in such pain from the EMG that I did not ask all of the questions I should have. The other symptoms I have are fatigue, muscle pain (deep) and fibromyalgia type problems from time to time, small deep muscle spasm/cramps that are short in duration. I have had low potassium levels on and off through the years, as did my father. My calcium has been normal. That I know of, I have never been tested for magnesium levels.
: : Sometimes I just think I am neurotic. Almost everyone has twitches, don't they? I am really frustrated. Should I just get over all of this, or is this a real condition?
: Hi, NO. Don't just "get over it" your experience is real. I spent 30 years telling myself I was being neuroticvwhen I felt awful and no-one could find any reason. Eventually a doctor, by accident, discovered that I had almost no thyroid in my system! I am having similar symptoms and no-one seems to know what it is. If I find any useful information I'll let you know.
Thanks, Tig. I will do the same. I just got off the phone with my neurologist because the fasciulations at rest are a hundred times worse since yesterday and the cramping is terrible. Everytime I try to go to sleep, I jerk myself awake or am having deep muscle spasms. I also started the Dantrium today. Although, a very good doctor, she offered me little. I have been in tears for the last 45 minutes. I am really concerned that I am losing my mind and causing (unconsciously) all of these symptoms.
Your description of excessive spontaneous muscle activity can represent a variety of different disorders, quite a few of which can be effectively treated with appropriate medication. These disorders include the stiff-man syndrome (which I feel is less likely in you case), neuromyotonia ("Isaac's syndrome"/continuous muscle fiber activity, or from an underlying neuropathy), cramps (secondary to some underlying systemic disorder, or an anterior horn cell disorder, or as a part of the cramp-fasciculation syndrome), tetany (from a low calcium levels, for instance), myotonia (which may occur in primary or secondary disorders of muscle) or from contracture (unlikely). A good history and physical examination along with an EMG examination and appropriate blood tests (to look for thyroid deficiency and other systemic disorders) should be sufficient in most cases to come to some preliminary conclusions regarding your diagnosis.
"Neuromyopathy" means little more than it states - namely a disorder of nerve AND muscle. I agree that it is not a terribly helpful term.
In case your condition remains undiagnosed at Emory (which is an excellent center), you are welcome to seek a second opinion from one of the neuromuscular specialists at the Cleveland Clinic. Dr. Mitsumoto, Dr. Shields, Dr. Levin, Dr. Pioro, and Dr. Wilbourn are renowned nationally and internationally for the work in this subspeciality of neurology. The number to call for appointments is (216)444-5559, or (800)223-2273 toll free.
I wish you the best of luck.
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