Hi all, I have posted this in MS and MG forums for some advise.

I had my first neuro appt and now I'm even more confused. He feels pretty certain that I have MG not MS, but he can't explain the electrical zaps I get everywhere or painful muscle spasms, cramping, tingling, pins & needles. He says MG doesn't cause pain, so wonder how he can be certain I have MG when I also have pain?

He also says that MG doesn't cause brain lesions, BUT my MRI showed spot. He said it could be from a migraine. Basically he saw my drooping eyelid and couldn't get past MG.

I'd be ok with MG dx, if I wasn't having shooting zaps while he is saying MG doesn't cause pain. Oh yes the blood test for MG was normal also. I'm so confused.

BTW...the rx for mestinson is killing my stomach & having spasms everywhere. he said that would happen. wow this is so much fun.

I'm glad you are getting the attention from your neuro. How much (and how often) Mestinon are you taking and is it helping your weakness at all? Sometimes it takes some 'geting used to'. Be sure to take the pill with some food - it might help the stomach issues.

RE the pain and tingling - - I had that too in the beginning. My neuro said to take B12 sublingual. That was 5 years ago - and I haven't had the PN type issues in a very long time. Would be great if that worked for you!

My husband has been diagnosed with MG and has had the IVIG twice. They're giving it to him every other day, for 5 treatments altogether. He has had no re-action to it whatsoever. He's on mestinon too, but only takes 1/2 tablet, with food, 3 times a day, no stomach problems. So far he hasn't needed more, and his eye isn't drooping like it did.

I have had peripheral neuropathy since 1999 and some of your symptoms are more in tune with what I experience. Numb feet, some balance issues sometimes, burning feet and legs, especially when I go to bed. Is it possible you could have both MG and PN? I also take methocobalamin, 2500 mcg per day. Started out taking 5000 mcg/day but now that my numbers are around 1000, I've reduced the dosage, per MrsD's advice.

Joan

Hi Sue,
I know it sounds weird to say I'm glad someone else had the issue but it does bring some comfort. I will say that I haven't had the zaps (pin prick) feeling the last couple of days since taking the Mestinon. I did start taking my vit B again also. I had been getting shots before this whole MG issue, to help with the fatigue.

When you first started taking the mestinon did you have muscle twitches? A couple of times after about hour or so of taking it my eyelids and under my eye will twitch. It only last about 30 minutes. It's happen twice now and just wasn't sure if common or not?

I take 60mg 3 times per day. Taking with some food has help with stomach issues too.

Hi Elle!

Yes the twitches are 'normal' for me with the Mestinon - somedays there are really irritating and other days I don't have them at all. But when they are there it is always around my right eye!

I think it is because my eyes have never been affected so much with MG (no dv or blurry vision complaints) - - so I figure my eye muscles sometimes overreact to the Mestinon...while my weak muscles are getting just what they need!

True or not - who knows!! But I'll gladly put up with an annoying twitch to be able to do more of the things that are important to me.

Happy to hear the food helps with the tummy issues!