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Occular Myasthenia gravis (MG)
Autoimmune Diseases | Last Active: Oct 25, 2021 | Replies (47)Comment receiving replies
Hi @mylife and @750scar78,
I’ve enjoyed reading the support and information you have shared and provided for each other on Connect. This is what Connect is about, and it's so great to see it in action. Thank you!
Mayo Clinic also has some very detailed care options for MG; here's some information which you may find helpful:
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/care-at-mayo-clinic/mac-20352044
I'm confident that @gretagean @lynnes @dschmidt and others will join this conversation and share their insights.
@mylife, may I ask what meds you've been prescribed? Mestinon seems to be the most common choice for MG. @750scar78, if you wish, please let us know if you have any questions after visiting with the neurologist. We look forward to getting to know both of you.
Replies to "Hi @mylife and @750scar78, I’ve enjoyed reading the support and information you have shared and provided..."
Could I ask you to put these MG 's onto the other ones I have been in touch with? Thanks Marg.
I've been quiet for a while because I just don't want this.....and maybe I don't have it. Anyway, I did have the muscle/nerve test and didn't fare well. Now I'm waiting on the results of a blood test. I should get it on Monday 29th. My neuro doctor says you can have MG without the normal symptoms too.....just great! I can't drive yet as my left eyelid keeps drooping. My right eye seems to have corrected itself nicely though. My husband has been really great about driving me everywhere. Does a headache go with this disease? I seem to get them lately along with my drooping head......oh so weird!
@750scar78 Hi, 750... Your note caught my eye just now, and I could not resist answering, at least partially. I have hATTRwt, a primary systemic hereditary form of TransThyRetin Amyloidosis, a wild type. That is, no one can guess what mutation of the protein will show up next, if any. And because no one can guess the next mutation, the prognosis is wild, and so are the potential treatments. But what caught me is your question about the headache and the drooping head. Now, I don't have the headaches behind the eyes any longer, or the drooping head. But I just know that tomorrow morning when I wake up I may have another sign or symptom, from another broken toe to black eyes to purple petechiae all over my body. This is a progressive disorder, and it cycles through these things frequently. To date I can count about 250 symptoms and signs which are recognized as part of hATTRwt, or something similar. By the way, there is a dropping head disorder very common in southern Africa. I do not know much more about it, but it is mostly in children, and is very serious. Some say it is part of the Amyloidosis family, but I have not been able to check that out. Anyway, hang in there. If you would like, I have written up some of my story at https://bit.Ly/1w7j4j8 under "Amyloidosis". There is other stuff there as well, and it is all free. old karl
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I have been on Mestinon since I went into Hospital 29th November 17. I had an episode of double vision about 19 months before this episode that started in Sept 2017. that would have been in Feb 2016. It took about 4 to 5 months to clear. My Appt. with the Dr for the
Muscle test is on the 26th Feb 2018. I will let you know how I get on. My Neurologist said my muscle strength is pretty good but my muscle tone is what is bothering me. My legs have lost all the muscle tone and are almost twice the size they were. Although I have to remember that for the past almost 4 years I have not been able to excercise because of my two back Surgeries I've had in Aug 2015 and again in July 2017. I wish we knew what the cause was that sets this off.