Thread: MG questions
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Old 11-17-2014, 08:43 AM
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Barb, Did your doctors check your Vitamin B12 level?! If not, please ask your primary doctor to do that. Slight demyelinating changes in an MRI can be caused by a B12 deficiency.

I feel that way every time I go to the eye doctor. Have you ever heard of Atropine? That is usually in the drops you're given. It does the opposite of Mestinon. In other words, it can make someone with MG worse, especially in the eye/neck/throat area. It also affects my breathing. My MG gets worse within the next day after I have them.

Doctors don't know everything. Even my very good ophthalmologist missed my ptosis (I've had MG my entire life, but diagnosed in 2000/2001). You might want to tell your eye doc that Atropine is particularly bad for MGers not on drugs yet!

I've also historically had a very hard time coming out of anesthesia. Yup, it can make MGers worse, too. As can some other drugs.

Minor side effects of a drug usually wear off within a week or two (Mrs. D could tell you for sure). It's been 7 months! If you have a B12 deficiency causing nerve pain, Cymbalta won't help, only B12 will! BTW, Neurontin can make someone with MG worse and has been shown to bring it on in some people!

If you have MG and if you have a B12 deficiency, it could be that the Cymbalta isn't what is making you worse (besides the side effects), but the B12 deficiency. That's a lot of "ifs," but you need B12 to make acetylcholine in the body. My MG became worse when I had my deficiency back in 1997-1999, although I wasn't diagnosed with MG yet. It just became more noticeable.

Some things can cause neuropathies/paresthesias to become worse, such as MSG in foods (naturally occurring in tomatoes, too), and too much B6 in supplements. You could visit the neuropathy forum here for more info, or keep asking questions here!

This is only anecdotal, but my creatinine has been low a couple of times in the past. Anyone else?

You might have more than one thing going on, which is not uncommon with those of us who have autoimmune diseases. Sometimes doctors have tunnel vision and are looking for that one "magic bullet" disease to explain all symptoms. At one point, I had three conditions at the same time. It amazes me how bad some doctors are at diagnostics! No offense to anyone's doctor, but that's been my experience.

JJ, if you begin to see a pattern of feeling worse after you do activities, then you have to adjust your "resting" time after that to make up for it. Some people can gain back strength or conditioning, but I can't say how you'll do or not! Just don't push your body, and alternate activity with rest (and common sense).

Annie

Last edited by AnnieB3; 11-17-2014 at 01:16 PM.
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juliejayne (11-18-2014)