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-   -   Channelopathy/MG/CMS/LEMS for Stellatum (https://www.neurotalk.org/myasthenia-gravis/182507-channelopathy-mg-cms-lems-stellatum.html)

Stellatum 01-25-2013 09:23 PM

Couple of quick updates. First, my special diet (eat every three hours, small meals, no heavy carbs or salt) isn't heading off the attacks of weakness. Second, my aunt who suddenly came down with balance trouble and double vision has half a diagnosis from a neuro-ophthalmologist: Graves ophthalmology.

Graves disease runs rampant in that side of my family. Evidently Graves disease can cause double vision even in a patient whose thyroid isn't running hyper. The mechanism is that the tissue behind the eyes is just a really good fit for Graves antibodies, so they tend to collect there, and that causes double vision. The neuro-opth didn't see any signs of a myasthenic syndrome. Her balance troubles are resolved and still unexplained.

So...well, so I still don't know what's going on. I see the Boston neuro on Tuesday.

Abby

4-eyes 01-25-2013 09:41 PM

DV can cause disorientation/balance issues, especially at first. Glad your Gram found some answers and hope you do, too!

southblues 01-26-2013 01:16 PM

Abby, I'm sorry the diet didn't help. Thanks for telling us so we won't all go out and try it.

Stellatum 01-26-2013 01:33 PM

Quote:

Originally Posted by southblues (Post 951159)
Abby, I'm sorry the diet didn't help. Thanks for telling us so we won't all go out and try it.

Celeste, there's no reason I know of to think the diet I describe would help MG. I tried it because I'm wondering if there's a chance I have hypokalemic periodic paralysis instead of MG. Getting too hungry, eating a lot of carbs at once, and eating a lot of salt at once can be triggers for HKPP for some people.

Abby

Stellatum 01-26-2013 04:59 PM

In the past couple of weeks, I've been worse, which has been helpful: it's very clear to me now that I have fatigable weakness, and not just spells of weakness. I think when I'm generally strong, I just don't notice it so much.

So for example, today I can put two or three logs into the wood stove, but by the fourth, my arms are really tired.

I am not ruling out HKPP--I will talk to the doctor about it--but I feel more like my symptoms fit well with MG than I used to.

Abby

pingpongman 01-26-2013 05:31 PM

Abby I think you are right. You have to give this crap a lot of thought.
Mike


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