Does anyone have information about the misdiagnosis of Lambert-Eaton myasthenic syndrome (LEMS)?
RAC
I know this is more of a medical question but since it is a rare disease few physicians have adequate answers. I am hoping to receive information from others that might have been diagnosed. A relative of mine was told she had LEMS based on her symptoms and tests of her muscles. After a recent blood test, however, she was told she was negative for LEMS.
I have LEMS and here is our chat room.
http://groups.yahoo.com/group/Lambert-Eaton/
The electrical stimulation test is the most important test.
The diagnosis is based on a typical history with in addition at least one of the following:1) low compound muscle action potential after nerve stimulation with decrement at low frequency stimulation (3 Hz) of more than 10%, and increment after high frequency stimulation (more than 20 Hz or preferably maximal voluntary contraction) of more than 100%. 2) presence of anti-P/Q-type voltage-gated calcium channel antibodies in the serum. Anti-P/Q-type VGCC antibodies are present in the serum of at least 85% of the patients
I have had LEMS for over 15 years. There is a support group for LEMS patients. The address is: http://health.groups.yahoo.com/group/Lambert-Eaton/
An EMG is usually the most effective tool in diagnosing LEMS as not all people with LEMS carry the anti-bodies.
I don’t have a CLUE! But since no one else has answered this, you might want to consider either reposting this question or just googling it!