Fred Besthorn
Forum Replies Created
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Denise,
Some good advice here. I have had MG for almost 20 years. I was diagnosed with obstructive sleep apnea many years ago but only started used a CPAP machine back in July of 2022. After getting my 2nd covid booster (big mistake for me) back in Sept. 2022, my MG went off the cliff and went into crisis in mid Oct 2022. Have been on prednisone, mestinon, Imuran, IVIG infusion and Rituximab infusions since Nov. 2022. Problems with diaphragm and shortness of breath. My CPAP has been a life saver at night. I suppose it depends on the extent and intensity of your breathing difficulties but in my case the CPAP has been very helpful to help me breath easier and more calmly at night while trying to sleep. I also have an adjustable bed which I incline a small degree at night and that also helps. Was glad I had been on CPAP machine before flare-up of MG, however. I was already accustomed to it and had made the commitment to use it every night. It can be difficult to get used to (especially getting used to mask on your face) and may not be the best option if you are in the midst of a flare-up/crisis. Good luck.
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Paul,
Hope you will find the help you so deserve. I’ve had MG since 2004. The journey is up and down. Some good days and months, some not so good. Currently, in a severe flare-up after getting my second covid 19 booster shot. Bad decision on my part since I had a minor flair-up after first booster but dismissed it. In terms of ptosis. I had been using “crutch glasses” for years. Don’t need them all the time but they are a life saver when eye droops get pretty serious. I’ve only found one place in California where on can get them custom made and they are not terribly expensive. Take care Paul, Fred
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Got my second booster end of September. 2022. My bulbar MG was doing pretty good on prednisone, mestinon, imuran and monthly IVIG. By mid October one morning woke up, serious symptoms returned with vengeance. Double vision, ptosis, swallowing, some breathing issues, slurred speech, chewing etc etc. Worst flair up in years. Still struggling nearly 2 months later. So frustrating. Neurologist wants to start me on rituxan in addition to current meds. Anyone else had this experience? Thanks everyone. So pleased to have found this group.
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I had similar serious eye issues after rituximab infusion. Issues began just weeks after first loading dose. Eyes became exceedingly dry, inflamed, blood shot, blurry vision, some loss of visual acuity, gummy discharge, etc. It has been just miserable. Of course the eye side effects makes the ptosis even worse. It has gotten so bad that I have become almost non-functional visually except when wearing my crutch glasses which allows me to see for a few hours each day. Neurologist passes eye issues off as just part of my MG flair-up, but reluctantly scheduled me with a neuro opthamologist who I’m not able to get in to see for another two months. This eye condition is slowly getting better after nearly five months of struggling with it. I get so tired of neurologist seemingly always pushing a new med and then being unwilling to acknowledge that the side effects are not due to your body’s reaction to the new drug but simply a manifestation of ones MG. I am due for next loading dose in June but will not continue with Rituxamab.
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Jonathan. Thanks for your story and assessment. I think my mother may have had undiagnosed MG. I was also interested in finding out more about the zoom support groups you spoke of if you would’ve mind sharing info. Thanks Fred
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I have had same experience with eyes and balance after second booster in late September 2022. Still struggling with blurred vision, double vision, ptosis in both eyes, very dry and puffy/swollen eyes. Have ocular MG but these are the worst symptoms since initial diagnosis in 2004. Sorry you are struggling. I hope things have improved for you.