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Thursday, September 29, 2016
Nutritional deficiency and MG
im 25 and came down with mg very badly about 18-20 months ago while pregnant. it was during a very stressful time on top of a rough pregnancy (severe morning sickness) and i wasn`t eating much and my electrolytes ere often quite low and that was when i began having minor symptoms. only a "dead" lip like i`d been at the dentist and only really affected my ability to use a straw or to whistle occasionally. could the lack of potassium have instigated, or antagonized, myasthenia gravis. upon reflexion i may have had it VERY mildly most of my life. at this point i am stuck in bed most of the time as i am now unble to walk on my own for more than a few feet about half the time. actually i`m more concerned with nutritional supplements now as all along they have been about as effective in providing me energy and/or strength but i have not been able to get any info from a credible source as to do`s and don`ts except avaoid magnesium and echinacea. currently i take a multi, zinc (recommended for proper thymus function), sublingual b complex, potassium (which has has the strongest effect but it seems maybe i need more. whats a "safe" dosage to supplement?), vitamins c and e, calcium and ginseng (has helped reduce fatigue). also something called moducare (plant sterols and sterolins) that studies have shown to drastically improve autoimmune problems by correcting the immune system. am i on the right track? since a balanced diet is virtually impossible for me as most soft foods i am allergic to i really have to take vitamins anyways. i`ve read that you have to be sure to balance the ratio of certain nutrients also like zinc/copper/and iron for effectiveness. everyone tells me to ask someone else so any help will be great. also, i have 1-2 more ?`s- when would i need to worry about permanent loss of function? i`ve been told its not common but i have been VERY bad off for quite some time and went untreated for about a year (misdiagnosed depression and vitamin deficiency, magnesium was recommended at 800-1000 mg daily...figures right). the last question is about thyroid effects with mg. labs have showed my TSH to be low or just barely in the normal range- how greatly does this affect mg? currently i take mestinon, low doses of prednisone and i go for ivig monthly. i was unable to take imuran after maybe 2 months and from what ive been told i dont have many more treatment options.
You sound as overwhelmed. First off, you sound like you are questioning your diagnosis. Talk to your physician about how that diagnosis was made-- antibodies, repetitive nerve stimulation and EMG, Tensilon testing, etc. I encourage second opinions, but use a tertiary care center like the Mayo, Johns Hopkins, Cleveland Clinic. Second, magnesium is bad for you as a myasthenic and be careful about how much vitamin B6 you take-- too much B6 can give you a painful neuropathy. Low potassium can cause muscle weakness but too much potassium can be deadly. Watch your intake of supplements and let your physician know what you are doing. Thyroid can definitely affect your myasthenia, but a low TSH could also be secondary to your prednisone use and might just be a lab value. More importantly might be tests like a free T4 and free T3. As for diet, I would give you the same recommendations that I use in my own life. I try to eat a balanced diet with vegetables, protein, and some carbohydrates. I try to avoid artifical sweeteners but I know I come in contact with some. Hope this helps.
Robert W Neel, IV, MD
Assistant Professor of Neurology
College of Medicine
University of Cincinnati