Hello. As mentioned in my original post, I've recently been diagnosed with MG (clinical only). I've recently developed some disturbing symptoms and wonder if any other MG sufferers also experience anything similar .

First, constant hand tremors. If I'm standing for any length of time, I get tremors in the legs as well. In addition, I often get a sensation of my peripheral nerve endings being on the surface of my skin. For example, the uncomfortable feeling begins at my feet, travels up my legs, then across my abdomen, then finally down my arms and hands. This sensation only lasts about a minute.
And lastly, if I'm sitting and relaxing, I find my body has "clenched tight" I force myself to relax but within minutes I'm clenching again.
These symptoms are driving me nuts and I'm not sure that they're related to MG.
Any thoughts or suggestions would be appreciated
Thanks, Jan

I've had some of those type symptoms on occasion, but nobody has been able to diagnose it. I hope you feel better.

I started getting tremors about a year ago.. I think it was a result of muscle fatigue.. I got a double dose of IVIG ("re"-loading dose) and it resolved the issue I am technically still a mystery as well, but LEMS is high on the list

Jan, GO TO THE DOCTOR.

It could be a number of different things. You might be taking too much Mestinon. You could have an electrolyte imbalance. It could be anxiety (no offense). Any new or different symptom should prompt you to see a doctor right away!

I hope you'll be okay.

Annie

I have shared these symptoms with my new neuromuscular dr. He rolled hi eyes and said these symptoms were not related to MG. He also said that I didn't meet the criteria for Parkinson's. Seems like I'm always going back to square one. I've just started taking the timed release mestinon, maybe I'll see some relief.
Thanks Annie for your suggestions

I should've been more specific. Go see a primary doctor. Neurologists are internists to begin with, however, they focus on neurology. An internist or GP can look at ALL possibilities for what might be going on.

Specialty doctors might pooh-pooh new symptoms because it's out of their realm.

Some people don't do well on Timespan. And if you take the "regular" Mestinon in addition to it, you can have overdose symptoms. Did your neuro tell you that?

Please talk to a PCP about what is going on.

Annie

Hi Annie, thanks for the clarification. I have a new pcp (my previous dr retired due to ACA). He agrees that I do indeed have MG. His advice is to go home and meditate. He also suggested hiking to build up my muscular strength. I think I need a new pcp, haha.
I quit taking the "regular" mestinon as soon as I started the timespan. So far so good. That clenching feeling persists however, as well as that creepy nerve endings feeling in my arms and legs. My neuro has an associate that is an internist. I believe I'll schedule a consult with him (hiking indeed)
Thanks again for your advice and support
Jan

I don't think the PCP went far enough.

Find a mountain, they're best to meditate on.

Don't bring your cell, it'll only interrupt the meditation.

Wear lots of heavy clothing, because it can get colder high up on a mountain.

When you start to sweat, keep the clothing on. It's good for your metabolism and you'll lose weight.

If you are able to climb to ten feet, you'll feel dizzy, but that's only hypoxemia from the steep elevation.

If you feel short of breath, that only means that you aren't getting enough oxygen and need to breathe in more deeply.

When your legs begin to feel paralyzed, drink some water to increase circulation.

If you can't swallow the water, that only means you haven't exercised your speaking muscles enough.

And if you are unable to move or breathe, you could always yodel for a physical therapist, because you're probably only deconditioned.

I've climbed that mountain before. I think it's been named Dr. Delusional mountain!

OMG! I can't stop laughing. I'm making real tears.
Honestly, thanks for the great advice. Problem is, I can't yodel!!
Take care,
Jan