michail

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]

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]

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]

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]

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]

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]

Takes at least 1 month to improvement, possibly up to 3-4

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]

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]

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

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…

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]

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]