Paul Dube
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Getting older is the ability to manage losses. Having MG only complicates this process. As we age, I am 78, we are faced with things we can no longer do or do at a slower pace. I would love to bike ride again but it is no longer possible but I compensate with other less strenuous activities, like riding a three wheeler. Of course, it’s not the same but I make the best of it. Best to everyone, Paul Dubé
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I finished my last series of Vyvgart June 16, 2023. Just prior to finishing the series, I had blood work done and 2 weeks later another series. My bilirubine was normal the first time but not the second. Also, the second time, I showed more iron in my blood. Too much iron in blood can cause extreme fatigue, which happened to me. Given my symptom improvement (more control of voice, not as raspy), I’m not sure that it was worth the 25,000.00 I paid Solias.
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I contracted MG five years ago. I was taking a high dose of magnesium at that time. While swimming freestyle, I noticed that my legs would get very week and several months later, I began seeing double out of my left eye. My MG was diagnosed by a neuro-ophthalmologist. My MG is controlled by mestinon, 3x’s a day at 60 mg.
On another note, I completed my fourth infusion several weeks ago with Vyvgart. Completing this regimen, I have better control of eating and, most importantly swallowing.
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Mestinon was the drug of choice when I was diagnosed with Generalized Myasthenia Gravis. It took more than two years for the side effects of Mestinon to subside. The side effects included bowel/pelvic pain, diarrhea that was uncontrollable and pelvic floor dysfunction. The alternative to mestinon was a steroid which was not recommended by my neurologist because of those side effects causing even more medical issues. I am glad that I stayed with mestinon because now I take it with very minimal side effects, if any at all. Like my fellow colleagues, I am waiting for a cure that does not include steroids or infusions.
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I have had generalized myasthenia gravis for just over three years. The medication I take is mestinon, three times a day. With medication, I no longer have double vision from my left eye, facial drooping or swallowing issues but I do have muscle weakness in the buttocks and upper leg muscles which increases as the day goes on. My very first symptom was double vision which I believe was seriously aggravated by taking magnesium as a supplement. So I would caution others taking this supplement. I also avoid cereals that contain magnesium.
I am in physical therapy for lower back pain and the treatment plan is to strengthen my core muscles. Why? If the core muscles are stronger than those muscles tighten the muscles surrounding the spine and consequently less pain emanating from the spine. They hold the spine in place. If the buttocks muscles and upper leg muscles are weakened by MG then the spine can cause pain if the spine already has arthritis, stenosis etc. That is what happened in my case. With a weakened core I do experience lower back pain when I get up in the morning but it soon dissipates after I walk for a minute but again a stronger core helps. Sleep helps restore muscles so taking mestinon before going to bed does not make sense to me and if I feel stronger I will delay my first dose until mid-morning or later. It is only as the day progresses and the muscles weaken that I do experience wobbliness when walking. Best, Paul D -
Jodi I agree. I have had MG for five years. Honesty is the best policy tempered to the age and development of a child. As a child psychotherapist I tell children that they sometimes think that they in some ways contributed to my illness and I let them know my disease is not something they caused.