Hi. I was diagnosed as a 42 yr old woman with Ocular Myasthenia Gravis (ptosis, diplopia) in September 2015 by a neuro-ophthalmologist. I was advised based on my history of symptoms that the OMG likely started a year or so before.

In June of 2016, my neurologist advised I had likely advanced to Generalized MG (fatigue, muscle weakness, albeit mild). This was confirmed with a positive SFEMG administered in November 2016 at Cedar Sinai. A prominent neurologist at Cedar Sinai asked me *before* the SFEMG "so when did you decide you had MG?". I told him I'd never heard of it before my OMG diagnosis by the neuro-ophthalmologist. I also had bloodwork done at Cedar Sinai which determined I am triple seronegative. I tested negative for the AChR, MuSK, and LRP4 antibodies and am therefore *not* a good candidate for a thymectomy. However, the clinician who administered the SFEMG test told me he knew I had MG within 5 minutes of starting the test and I do have an excellent response to Mestinon.

I have received some pressure from my care providers to start steroid therapy, but am dead-set against right now it because I fear the long-term side effects and my symptoms are still mild. My Mestinon protocol was originally 30mg (breakfast), 45mg (lunch), 45mg (supper), and 30mg (bedtime), but I've had to bump it up to 45mg for each dose this year. I use coffee and tea as "pump primers" for the mestinon, usually 1 cup (no more than 2) per day. I've found that if I take a biotin supplement at night and a B12 supplement in the morning, I have noticeably more energy during the day and less fatigue in the afternoon.

I cannot tolerate heat anymore (prior to my diagnosis, not an issue) and bright sunlight tires my eyes. I am functionally a vampire. I handle strenuous exercise well ONLY when it's *cold*. Mowing my postage stamp of a front lawn on a 75 degree morning now makes me feel as if I've run 5 miles. The hotter and sunnier it is, the more I am prone to fatigue and muscle weakness. My legs can feel like stumps and it's hard for me to hold things in my hands. But, I am able to ski and ice skate for hours. I also experience muscle pain in connection with hot days and any sort of physical activity. I've been told this isn't MG, but what else would it be since I've been tested for MS (negative)? It started with the Generalized MG.

An interesting fact about me is that I have been on continuous birth control (for an unrelated medical condition) since 2012 meaning I have no menstruation cycle. I wonder if this has something to do with why my MG is still mild as I understand menstruation can exacerbate MG symptoms for women.

I was exceptionally physically fit prior to my MG diagnosis and have been athletic my entire life. Now, I guess I'm just average, but I do wonder if this fitness has served me in a positive way with the MG. Finally, I have experienced 2 episodes in the last 2 years where I had difficulty seeing, talking, swallowing, walking, and breathing (felt like my chest was being squeezed). I didn't feel like I needed to go to the ER, but it was still frightening. These symptoms resolved after about an hour of complete cessation of physical activity. Since I've never experienced anything like this prior to my MG diagnosis, I am guessing these episodes were mild MG crises.

I'm sharing these personal details of my MG with the hope that my experience is helpful in some way to others.

I am a 38 year old male, I am new to this forum.

I have struggled with a mystery illness for the last 10 years. I was diagnosed with MG last year by my nuro who specialized in rare nuro conditions.

Took mestion for the last 12 months life was great, training crossfit and Olympic weightlifting with no problems what so ever at all. Then over the period of the last month I am back to not being able to walk very good, swallowing is weak and eyes a dropping.

Life with MG I guess.

Hi Mountaineer

Welcome to NeuroTalk; I hope that you will find the community as knowledgeable and supportive as I have .

The MG forum is very active so I am sure that you will get lots of support and good ideas from other members.

All the best.

How can I get my mom through the chronic exhaustion from the mg crisis?
My mom is not rebounding it’s almost 2 months

I need regular IVIg infusions in addition to Mestinon.

Bumping this info for new members---

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Please use the link above to make a new discussion thread in the main section..