My MG experience to share – Paul B.
“Before being diagnosed with MG in 1998, 8 months prior I had double vision with my right eye-lid dropping. Initially I thought my eyes were playing up and even my eye specialist was fooled.
When my family and I were holidaying in Hadjai (Thailand) the effect became prominent. I became breathless while walking short distances and I needed the air-conditioned hotel room to revive. Heat was my worse enemy. When I went back to Malaysia I consulted a GP and his remark was that there was no cure for MG.
We were desperate and immediately consulted our family GP on arrival, confirm it was MG and she referred me to a neurosurgeon, who in turn admitted me to RPA Hospital for investigation and it was found that a thymectomy was necessary. Pre and post op, I underwent plasmapherosis. The surgeon removed a benign thymoma the size of a ping pong ball. I was put onto Imuran (150mg/daily), prednisone (25mg/daily) and Mestinon (60mg/daily).
After the operation I was still weak but my eyelids did not droop. I still had double vision and my facial muscles were numb. I had poor appetite and could not chew, felt bloated and my overall muscle weakness was still present. I was only capable of eating small meals and swallowing was still a problem.
We contacted the Secretary of the MG NSW association and he explained that he also suffers from MG and was on a lot of health supplements like Gingko Biloba, Syberian Ginseng, Flaxseed oil, primrose oil, bilberry and multivitamins. We added on Bio-ace, Folic Acid, Glucosamide, Calcium, Nonni tablets and later on Kefir and GTF milk powder (which contains colostrum and trivalent chromium). Gingko was the catalyst that triggered my muscles to work and improved my chewing. Calcium helped to improve my joint ache, but I later added Glucosamide, which was more effective.
I tried Kafir that reduced my bloated abdomen. GTF (Glucose Tolerance Factor) improved my general condition ie made me less tired, more energetic, and reduced my muscle weakness and joint aches. I could speak louder and for a longer period without being short of breathe. Generally, I feel good and have no side effects from the health supplements.
At the moment I am on 75 mg Imuran and 30 mg Mestinon and continue to take only Gingko, GTF, Folic Acid and Glucosamide. I see my neurologist once every 2 months.
I do hope this information is helpful to my fellow MGers.