I get a lot of nerve pain. Haven't figured out any connection yet.

Me too!!
kathie

How do you know if pain is nerve pain?

Nerve pain is very sharp, like an electrical charge jolting you or tingling, burning or the sensation of ice water dripping, pins and needles or both numb and painful at the same time (like when you sit on your leg and it falls asleep). It is not relieved by rubbing it or heat or cold like a muscle spasm is. It is often so painful that you do not want to touch it. It can be accompanied by a vibration sensation or muscle fascilation.

kathie

Nerve pain is all about "sensation."

It can run on a spectrum from hypersensitive to numb.

You know how if you fall asleep on your arm, it tends to go numb? The circulation has been cut off and, therefore, the nerve is, too.

When someone is paralyzed, they have no sensation. If they were to recover any sensation (as some people do), it might be an ever so slight feeling coming back, meaning they can sort of feel when someone is touching a limb.

Pain is a part of the healing process of any nerve, like when you have nerves cut into during a thymectomy! As they heal, the pain (and numbness) is reduced.

B12 can help heal peripheral nerves. And a B12 deficiency can cause peripheral nerves to hurt, be hypersensitive, numb, tingle, etc.

It doesn't necessarily mean that you have MS. Or ALS. It could be a pinched nerve, a deficiency, an electrolyte/fluid imbalance, a thyroid disease, and a lot of other causes!

Electrolyte deficiencies, like calcium, can cause all kinds of twitching.

Does that help?

Being a seronegative MGer isn't fun. But don't doubt a diagnosis if you truly believe you have it. It doesn't mean you can't have something else, but let your doctor figure it out (if they can!).

Annie

When I took mestinon regularly ( which got rid of my ptosis!) If I took too much I would get horrible twitches. A lot of my problems with mestinon was that I suffer with gastroparesis intermittently so on occasions I would get a lot of mestinon dumped into my system in one go.

As for the band feeling - my back is very temperamental and the slighted thing can cause me to have back spasm. They aren't really badly painful unless a lot of muscle groups are involved. However I describe the feeling that its as if I'm wearing a corset. It goes from the middle of my back and around.

MG causes muscle weakness - we all know. Could it be that those muscles have been working extra hard to support you and have gone into spasm? Causing the band feeling around your back and chest? Have you tried getting someone to massage your back when its like this? When its in spasm this can be painful but it will release the muscles.

Have you tried applying heat and seeing if that helps? A physios therapist friend of mine suggested applying ice to the muscles for a few minutes to shock them into releasing the spasm that works as well.

I hope this helps

Rach x