Quote:
Originally Posted by limpy
Hi Dan,
Sorry to hear what all you are going through. Were you taking prednisone when you went into crises?
That caused me to go I to crises last year.
I noticed that you are also on thyroid meds. Every time I have had any type of crises and had to be hospitalized, my thyroid levels were out of whack, either high or low, so you may want to consider that.
Have they tested you for LEMS (Lambert Eaton Myasthenic Syndrome)? It presents very similar to MG, but has a few other treatment options.
I was told I had MG and was later diagnosed with Lems.
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Wow, interesting.
I was prescribed the mestinone 60 mg 4 times per day which seemed to cause me to go into crisis.
this is what I am currently taking.
(levothyroxine, protonix 40 mg, prednisone 20mgx2 ) and after a week I feel like its all coming back. however my eyes change daily with some easing of the Diplopia and seem clearer.
M symptoms as of last year started as.....
< Instant double vision, one eye seeing lower than the other, shadows in both eyes,, and a couple shades of color different. seems to have been constant for a year with but a very few instances of eyes straightening out for short periods of time.
excessive eye tearing especially right eye.
Foggy headed,
weakness through out,
pins and needle feelings seeming to travel legs and arms, constant pain in left arm traveling up and down shoulder to wrist.
shortness of breath
gasping for air, no longer yawning
uncontrollable napping
fatigue
headaches migraines
choking, drinking even water
acid reflux which I never had
vomiting , not nausea but food water keeps coming up , wont go all the way down
slurred speech began at the end of the day but progress to the point of unable to pronounce words even in am after sleep
continual feeling of numbness in mouth throat, tongue and when I breath almost like I was inhaling Mentholyptus cough drop a cool feeling
right eye begin to droop but seemed like because i was being trained to ignore dbl vision.
loosing balance, falling both weakness and balance
loss of depth of vision, 2 d vision
having trouble chewing food, biting my tongue a lot.
eventually having trouble just drawing a breath like I was being strangled, if I stay calm I could slowly draw a breath, that sent me to ICU...
I will add to this if I remember more.
By the way I also have to inject 2 ml testosterone every two weeks extremely low, count basically unreadable. (a new mystery)
this is what I am currently taking.[I](levothyroxine, protonix 40 mg, prednisone 20mgx2 )
Dan