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?
Peripheral Vertigo is theatrically unrelated to MG. It is not caused by muscle weakness but by the miss-location of crystals in the inner ear, However, many MG sufferers report vertigo and, for years, I was one. I finally discovered it was a symptom of a symptom. My neck weakness was causing my head to flop around when I laid down at night. I started to be more careful when putting down my head and that solved the problem. Then, like you, I went on pyridostigmine, and I have been vertigo-free for five years. Again, the MG meds do not affect the crystals in your inner ear, but they strengthen your neck so that your head is not bouncing around and dislocating the crystals.
Yeah, I get it—it’s hard to tell what’s what when everything feels off. For me, leg weakness feels like my muscles just don’t want to work, like they’re out of juice. Balance issues are more like I’m walking on a trampoline, even on solid ground. Vertigo’s its own beast—spinning sensations, especially when I’m lying down or turning my head a certain way.
I started keeping track of when these things happen, and it actually helps. Weakness usually hits after activity, balance gets worse when I’m really tired, and vertigo just pops up randomly, usually tied to head movements. Writing it all down gave my neuro way more to work with
I am glad to hear that keeping track of when they occur has been really helpful for you and your doctor. It’s great that you’re finding ways to get a clearer picture of what’s happening! Here are some articles that may help you feel less alone: https://myasthenia-gravis.com/living/experiencing-pain, https://myasthenia-gravis.com/living/multiple-diagnoses, https://myasthenia-gravis.com/living/managing-multiple-conditions
Jodi, Team Member
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!!
