Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 09-16-2016, 12:08 AM #31
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
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AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
Posts: 3,306
15 yr Member
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It's a very long, ridiculous story. Suffice it to say that I'm only on Mestinon. I also take Flovent (inhaled steroid), due to the fact that Mestinon caused asthma. So it too treats my MG.

Do I need more treatments? Yes. Do I trust those neurologists in my state to help me? Well, considering that they consider me a whistleblower (filed medical complaints against them after I found out that they intentionally (allegedly) hid a positive antibody test from me), I CAN'T get additional treatments.

"If I can bathe, clothe, and feed myself, I don't need additional treatments."

As if.

Play nice with your neuro, even if he or she isn't perfect.

Annie
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Old 11-12-2016, 01:08 PM #32
patrick123 patrick123 is offline
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Join Date: Jun 2014
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patrick123 patrick123 is offline
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Quote:
Originally Posted by AnnieB3 View Post
ttmmkk001, Vitamin D3 supplements are very important, especially when your D level is so low. I personally take 10 - 15k of it daily.

In your case, you should see an endocrinologist to assess the bone issue and D at once. I would also recommend that you have your vitamin B12 tested, since that's a common deficiency as well. Research endocrinologists and find a good one. Some of us with MG also have thyroid issues.

If MG becomes worse, you can always go on Social Security Disability Insurance. It can take up to two or so years to be approved, so consider that going forward. It's not as much as you would get while working, but it's better than nothing.

I hope you will give yourself some time for this all to sink in. It's hard to adjust to the idea that you're sick! And any family or friends need to adjust as well. You do not have to inform an employer about your illness, however! How or when or if you do that is up to you.

Annie
Annie, I've been meaning to ask you a question about your Vit D intake vs calcium levels. Did you see a significant rise in calcium levels as your intake of Vit. D increased? In my case, after 1 yr. on 4K iu/day my serum calcium was just a bit high at 10.3mg/dl, with 10.1 being the upper limit of the acceptable range for my lab. Then, after 1 yr. on 6K/day my calcium level DROPPED! from 10.3 to 9.7!!?? Finally, after 6 mos. on 10K/day my calcium level crept back up to 10.2. Serum D rose continually during this period from<20ng/ml, to 68ng/ml. I see no pattern here and am in a bit of a quandary as to explain what is going on. Thanks for any insights you may have. .........Patrick ........BTW, I am 71 yrs. young...

Last edited by patrick123; 11-12-2016 at 04:28 PM.
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