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Old 12-16-2011, 08:24 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
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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Hi, GrannyJo. I won't even say what the abbreviation of that mutation always reminds me of.

http://www.ncbi.nlm.nih.gov/books/NBK6561/

Have any of you been tested for homocysteine and B12 levels as well as folate? There's a lot more to that "biochemical sequence" than just folic acid. Mrs. D. could probably give you a lot of info about this.

If you have this mutation, you cannot have Imuran. There are other drugs that could build up in your system/liver. You may want to consult a specialist to go over all of the possible implications of that. A good hematologist might be able to do that. Talk to your primary doctor about a referral. With these rarer, genetic mutations, you really need an expert. Also, your family should be tested as well.

You need things like B12 to make acetylcholine. This mutation "might" make MG worse but it would affect other systems more, such as circulation, the heart and brain.

What did your EEG say? Do you have a copy of it? If not, get it! You meant EEG, not EMG, right?

GrannyJo, have you had a brain MRI? I agree that if you had any damage, it might affect your swallow. But they'd have to "prove" that. Some people with MG simply have more bulbar issues and, therefore, more swallowing problems.

You might want to ask your doctors if Deplin is really the best way to go or if you could use a supplement instead. No, do not make any changes to what they said to do! This is a serious mutation and you need care. But at least ask the question next time. I am always cautious about whether a "drug" or a supplement would be better. You know how they like their drugs!

Mrs. D. will also echo this . . . you need to supplement with B12 when you take folate/folic acid, UNLESS this might make your situation worse. Normally, a person cannot get too much B12 but, again, you need to speak to an expert about all of this. Those two work synergistically together. Getting tested first for B12 and homocysteine is probably best.

I hope you guys will all do fine on your regimens. Best of luck.

Annie
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