Elinora, the more I read posts such as yours, the more I realize that neuro diagnosis is poor. I have experienced that myself in the past, for many years. I have more than one disease affecting nerves. I do use supplements as a necessary part of my regime to keep the nerves functioning. I don't seem to need B12 because my B12 is high, I think it was 1200 when I was first dx'd with Polycythemia Vera (my most recent disease I've had probably 8 years or so, in which many patients record high B12). I have thought from time to time that my B12 may be high because I don't absorb it from blood into wherever it's needed, but that's probably not true, as I do take supplements. I just have lots of neuropathy. I'm sorry you do too.

You've probably read here or somewhere that we must have plenty of magnesium and calcium to handle neuropathy as well as we can. I have no idea if taking magnesium supplements would harm MG. I know that I've had to take an abnormally high dose, at least 1000 mg a day, for over 25 years when my neurologist prescribed it. You should not take more calcium than magnesium, usually, and I take 1000 mg calcium too, at a different time than the mag. I take 100 mg B1 a day to help the mag work, and 400 mg of E complex. All these help the parasthesias and neuropathy. I can't take any of the neuropathy drugs. Could you ask your doc if it's OK to take increased Magnesium and Calcium with MG? These things are absolutely required by me, but I do not have MG.

Thank you! Magnesium is contraindicated for MG! My b12 was only 379 so I take b vitamins now.

Elinora,
You've gotten a lot of great info here, as I often do. I hope you can stay proactive with your questions regarding all that was brought up here. Keep your symptom journal up to date with all of the test questions brought up here for your appointments.
I hope you find some answers. You're dealing with enough with the MG, let alone all these other strange sxs going on...
Hope and prayers for answers and quick treatment

PS I had low B12 levels too, which was thought to cause my cog fog. Took 1200 units of B12 and levels have been normal-though cog fog is worse

For sure there is too much to consider. When I try to read differentials online I wonder how anyone can ever sort through these types of problems. Thanks for the welcoming help.

The taper down from my methylprednisolone has resulted in an unexpected list of trouble. The cold paresthesias are the worst and are located deep in my left back hip and right pelvis. My left hand sometimes bakes. When I have tried to exercise my right leg has become very tight. I don't know if SFN or vitamin deficiencies can yield such significant nerve pains. Can they? My neuro is on vacation, but his colleague stopped the taper. Please, if you read this, share your experiences with nerve pains. Thank you!

Ah, therein lies the rub...neuropathy is one of the many enemies on my MS list. Gabapentin is supposed to help, but I didn't notice much relief from it.

Honestly, cannabis reduces all of MS sxs in my body. I'm on baclofen and clonazepam for spasticity and it doesn't do the trick at all. I can't take zanaflex; so now I work with various forms of cannabis to help out. I am a lawbreaker until the Illinois medical cannabis law takes effect, but it's quality of life now, no matter what the law says

I hate the neuropathy, though, because there is really nothing physically you can do to reduce the pain. Stretches help reduce spasms, but what can you do when your electrical system is throwing short circuits through your body?

Hope you can find some relief...

Thanks for your reply! Hug!