Hi Jana, thanks for your response. My neurologist isn't a MG specialist as such but because I have continued to baffle him he's had me see several other Drs. I was admitted to hospital for a few days by a neuro-opthamologist who was 120% certain that I had MG. The problem was that when I had previously mentioned MG to my neuro he was quick to brush it off. Ive had a very distressing year with the passing of my dad, so my Dr. was pursuing the emotional component. When I reacted to the placebo he even made me take a psych assessment just to try and prove his point.it came back clear! I did test positive to the ice test which I thought yielded the exact same response as the tensilon test, but again my Dr. disregarded it. Thankfully I have an appointment lined up with a new neurologist for next week if I reach a dead end with the one I'm currently seeing.
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Originally Posted by jana
Pollyest, ARE you seeing an MG specialist?? If not, then he may not recognize WHAT you've got -- even if it hits him right SMACK in the face.
About the Tensilon test. Ephedrine and epinephrine are KNOWN to be treatments for MG (old time). Epinephrine is adrenaline -- something ALSO produced by our own bodies. It "is" possible that you were "hyped" up on your OWN adrenalin when you took the Tensilon test -- and this skewed the results -- making the placebo look like a drug. Sometimes, when we get upset, we get worse -- antibodies increase. But, sometimes, stress actually makes us better -- for a short time -- because of an adrenaline surge.
I have had the spasms -- but ONLY when I have over-used the muscles. I equate it to having had the flu -- and being sick in bed for a couple of weeks. Then you get up one day and try to go about a regular schedule. Your body is so weak that it trembles and "spasms" -- you wonder if it will support your weight. THAT is what MG feels like.
I can't say for sure if you have MG -- but, it certainly sounds possible. If you would tell us what area of the country (or WHAT country) you are in, we might be able to point you to some specialists.
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