Sorting out MG and non MG symptoms - balance vs. weakness
context: my diagnosis is only tentative seronegative - but I have had classic MG-type symptoms for over 20 years with no meds prescribed so far.
In an effort to better describe my symptoms to my Neurologist, I'd like to know if others can provide input on how they experience leg weakness vs. imbalance vs. vertigo. It seems like sometimes all three are in play for me but at other times it seems like my strength is OK but my coordination or balance is off, like walking on a ship at sea. At other times, it seems like my balance is OK but one of my legs is weak. At times I am dizzy while laying down. Do any of you have similar issues and if so, have you been able to isolate which one(s) are occurring at a particular time? If so, are the triggers or treatment for these different?
I conquered leg weakness but so far neither imbalance nor dizziness. Not on any meds yet (just diagnosed in August).
a new diagnosis can bring with it a lot of unknowns and challenges. Please know our community is here to support you. I hope you are able to find a treatment plan that is helpful in improving your other symptoms as well! All my best, Julie (team member)
I have problems getting the message across too. I have feeling like floating in a pool with eyes closed, can't tell up from down unless looking at ground and using cane. At the beginning of it all, legs would collapse lots without warning, not so much now. Can't walk a straight line. Seems like weakness is ascending for me... ankles drop, then thighs burn, hips feel like they go loose, then sharp pain in low back for a second between sholderblades and hard to breath. Had to lay down immediately. Very rare now on Mestinon. Rescue dog seems tuned into this and starts herding me to bed about hip level. MD of course, says this doesn't happen. - since my initial post, I have started taking Mestinon on a regular basis, and it must be helping as I have not had this balance issue at all over the last month. that is great!!
HI....Yes, I do!! I am seronegative MG and I have a Chiari Malformation (brain herniation into the spinal column.) That can also cause these neurological issues. I am starting to figure out what cause what. I also spinal problems degenerative disk disease, spinal stenosis etc. that figure in there also. Best wishes!! Sally Farrier... Myasthenia-Gravis.com (Team Member).
