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michail replied to the topic Treatment for Ocular Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 2 weeks, 2 days ago
I have generalized myasthenia, but it is mostly contolled; one of the first symptoms to go/reappear is the double vision. Mestinon does not work very well on eyes; I would say that Prednisone has a much better impact on eyes; it has both long term effect, but also a short term improvement; by short term I mean after taking Prednisone (15 – 20 mg…[Read more]
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michail replied to the topic Diagnostic criteria in the forum Healthcare and Myasthenia Gravis 1 month, 3 weeks ago
I would say that “objective” tests like SFEMG are not really that important for determining MG, and a neurologist who is WELL TRAINED should see the symptoms of MG immediately without any need for these tests. There are two explanations for your case: either the neuro is really not very good at it and tries to do it by “the book” or your case is…[Read more]
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michail replied to the topic Are there financial resources to help with the high costs of MG care? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 3 months ago
I am getting 500 mg every 5-6 months now for two years already, only the first infusion was 1000 mg.
My neurologist also wanted to do two infusions of 1000 mg spaced some 2-3 weeks apart and then keep 1000 mg ecvery 6 months or so; during the first infusion I had very high blood pressure (110/200) and decided to scale back the dose; I would say…[Read more]
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michail replied to the topic Managing Prednisone Weight Gain in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 3 months, 4 weeks ago
Most time of the last four years I was taking 15-25 mg of prednisone daily. My weight was relatively stable, I gained at most 5 kg in that time period (from 113 kg to 119 kg), but I was really fat, with BMI 39. Last year, when my MG improved, I started a gliders pilot course, and discovered that there was a weight limit of 103 kg. So… I lost 7…[Read more]
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michail replied to the topic CPAP Machines – do they work for breathing issues while sleeping in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 3 weeks ago
The only real use they have is if you are close to respiratory failure; I bought one after I ended in emergency; it can help a little, but not when sleeping. It was kind of backup, if you are travelling, far from emergency services; in that case, it may help. But then, any air pump (even a tyre pump), o diving equipment (air bottle with reductor)…[Read more]
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michail replied to the topic CPAP Machines – do they work for breathing issues while sleeping in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 3 weeks ago
The only real use they have is if you are close to respiratory failure; I bought one after I ended in emergency; it can help a little, but not when sleeping. It was kind of backup, if you are travelling, far from emergency services; in that case, it may help. But then, any air pump (even a tyre pump), o diving equipment (air bottle with…[Read more]
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michail replied to the topic Anyone with experience with Rituximab infusions? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 5 months, 2 weeks ago
Takes at least 1 month to improvement, possibly up to 3-4
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michail replied to the topic Anyone with experience with Rituximab infusions? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 5 months, 2 weeks ago
I am using Rituxumab. I had problems with all other immunosupressors (azathioprine (gave me hepatitis), micofenolato mofetil (barely manageable, head aches and many other neurological side effects), tacrolimus (after 6th tablet I was completely out). So Rituximab was the last opportunity. Seems to be working, although one can not be 100 % s…[Read more]
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michail replied to the topic Hey all! in the forum Additional Resources 6 months ago
There is a very simple test which was basically used without any blood tests to determine if one has MG or not. Mestinon. I had double vision, after oftalmologist examined me, she told me to see a neurologist, that one examined me and suggested just trying out Mestinon. I took 1/2 tablet and after 45 minutes my symptoms improved… later on a…[Read more]
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michail replied to the topic Risks of Epsom Salt Baths in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 7 months, 1 week ago
I doubt that it is the salt per se that causes flare-ups; but in my case any prolongued hot-water bath indeed results in worsening of the symptoms
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michail replied to the topic Liquid Mestinon in the forum Healthcare and Myasthenia Gravis 7 months, 3 weeks ago
I do not swallow mestinon, just “eat” it, it is bitter, but ok. I am not sure why you would want to use liquid one, virtually no point…
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michail replied to the topic High Dose Steroids after IVIG? in the forum Healthcare and Myasthenia Gravis 11 months, 1 week ago
Prednisone increase works fast (usually 2-3 weeks for me, with first signs of improvement usually by the day 10), so increasing the dose of prednisone is probably the correct thing to do. Once you are stabilized, one can try and figure out if different treatment is needed.
Prednisone reduction is a slow process, I am not sure if one would need a…[Read more]
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michail replied to the topic Mestinon Side Effects in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year ago
My neurologist taught me about mestinon dosage the following: it is incorrect to set a frequency of taking mestinon, i.e. 3 times a day, 5 times a day, etc. Mestinon works pretty much starting 45 minutes after taking and ends about 3 hours after taking it. After 4 hours its effect is almost nil. So to set one’s dosage one should really try di…[Read more]
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michail became a registered member 1 year ago
Hello, Michail! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, families, and medical professionals! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself…[Read more]