Hi All
I am waiting to see a neuromuscular consultant at the national hospital in london ilive in the uk i am a single mum of 3 girls and am 34. I have been ill since Jan 2007 and unable to work since may 2007 i was thought to have MS but tests proved i didnt. My sx are sweating chills goosebumps in isolated areas,weakness in limbs weak voice problems swallowing,all over body spasms every muscle effected even feel them in personal bits (sorry)twitching jerking muscles sometimes can be seen under skin,hands shake on activty of writing but not when still. had 5 mth break of them where they were just on the odd body part but back again in force taking baclofen for them my muscle feel like concrete hen very bad and i get bad fatiuge. does this sound like neuromyotonia my gp feels its neuromuscular a rheumy said he thought it was fibromyalgia but i dont fit most of the sx just the sensory sx and spasm but not the other stuff.
any advise on getting a diagnoses and treatment i am registered disabled i want my life back.
thanks
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neuromyotonia?
Explore topics in this discussion:
Neuromyotonia Isaac's syndrome Sweating Baclofen Muscle cramps Pain Dilantin Tegretol Neurontin Lyrica Fibromyalgia
3 replies
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- By boomerboy
- Posted September 18, 2009 at 5:43 pm
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Hi Angel75,
I have been labeled with "cramping and fasciculation syndrome" (also referred to by physicians as neuromyotonia or Isaac's syndrome, although each neurologist seems to have their own definition for these virtually identical diseases) after years of searching for answers.
I went through numerous emg and needle tests as well as a battery of other tests. Finally, one doctor ordered THE test that was needed from the beginning: an "antibody panel" test. This test finally identified an antibody for "voltage-gated potassium channels" on nerve endings. At least, that is one antibody identified--my doctor said there are others probably at work that will never be identified.
To get a definite diagnosis you need that test, and my advice is even as expensive as it is, if it comes up negative the first time, do it again (it came up positive only on my second try).
Also, you are still fairly early in your symptoms so there's still a chance you can be cured. And by this I mean there is a regular medical procedure that has been successful in curing others and it even helped me for a time, but it came too late for me. That procedure is called plasma pheresis. It involves checking into a hospital for at least five days and having yourself hooked up to a machine (once or twice daily) that basically sucks your blood out and strips the plasma from it and puts your red blood cells back in (sans plasma). This sucks out all your antibodies (which reside in plasma) and in theory can "reset" your body's immune system, sometimes permanently, so it forgets to make those antibodies that are attacking your own cells.
It's important, from personal experience and research, that you don't get replacement antibodies, or plasma infusion, in place of or in addition to your own. That procedure usually makes the situation worse, at least it did for me and has for many others (although this is a "favorite" solution for many doctors).
After trying many, many medications (including neurontin, dilantin, cymbalta, tegretol and more) I landed on the maximum dosage of Lyrica as the drug that gives me the most relief. At least, it usually helps keeps the worst pain at bay. Although after six years of this it seems to be losing its efficacy.
Would love to hear from you more about your situation. I empathize: I know what it is like to go from doctor to doctor and for them not to believe you or to minimize your symptoms. It's a grueling experience if one were in the best of health, much less the shape you're in.
John
- By DgufoInspire
- Posted October 3, 2009 at 2:07 am
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You have an obvious case of Isaac's syndrome/neuromyotonia. Check ot the huge thread on it at
http://www.inspire.com/groups/rare-disease/discussion/isaacs-syndrome/?page =45#replies
David Gordon MD
Family Medicine
with cramp fasciculation syndrome
- By nawnie
- Posted October 9, 2009 at 1:12 pm
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I HAVE SEVERE MUSCLE CRAMPS, SPASMS, TOES CURLING , ITCHY TWITCHY SKIN, LOOKS WEIRD WATCHING THEM JERK AND PULSE. TAKE MY SHOES OFF AND THE FEET AND TOES CURL AND MY LEGS GO NUTZ, SOMETIMES HAVE TROUBLE SWALLOWING, I HAVE RHEUMO ALSO AND WAS TOLD IT CAN BE A SIDE EFFECT OF IT. I HAVE ISAAC'S OR NEUROMYOTONIA, WHICH EVER. SEE A NEURO NEXT, HURRY UP I HOPE. IT SUCKS A LOT. NAWNIE
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