Dev keshav

I‘m so sorry that pyridostigmine has this effect on you. I had difficulties in the beginning with cramps, diarrhoea and often feeling like I was overdosed. But with time I learnt to adjust my dosage and timings . I also began taking azathioprine, when my MG became really bad. It was like I was in a semi crisis all the time . Very frightening. B…[Read more]

People can’t understand the fear of being unable to swallow saliva because swallowing is natural and taken for granted by those who do not have Myasthenia Gravis. I recall the day I was choking and trying to talk but I was slurring. I rushed to my doctor whose surgery was just around the corner. The nurse asked  me to wait as the doctor was not in…[Read more]

Hi Thomas, thank you for your good wishes. I think it’s a good idea to take the vitamin C and zinc. I did take them when Just before being hospitalized with covid 19 just over a year ago. So I’ll start again. All the best.

Hi Thomas, it was only a possibility that MG might be the cause because hearing loss is known to be linked to our illness. But again, we are all different and the ENT specialist did say it may be temporary. So I do hope that we both improve. I know Bali is a beautiful place . Have a happy retirement.

<p style=”text-align: left;”>Hi Rudolph, I was actually in quite a bad state when I was prescribed azathiaprine  and prednisone to supplement pyridostigmine. I am also tapering off the press until I stop them. But my MG symptom’s are being helped. As the doctors said, it was only guesswork on the cause  of the sudden deafness. With our ill…[Read more]

I  have hearing aids, but the one ear is totally deaf. I am managing with the azathiaprine now, apart from stomach issues, it seems to be helping. But I”m tapering off prednisone  for 6 weeks and will  then stop. I wonder if the azathiaprine will be a problem then. I’m 69 years old, strong in many ways and can still appreciate the ‘play’. It’s a…[Read more]

Thank you for your post. I wasn’t happy to take the azathiaprine either but I was really struggling at that time. It seems to have helped me, but I will ask my neurologist about the alternative you mentioned. The Ent specialist ruled out acoustic neuroma. Now  just have to get used to the strangeness of not knowing where sounds are coming from an…[Read more]

There is someone I know who recently started being helpful. Bit I don’t know how to deal with things she says. She doesn’t understand what Myasthenia Gravis really is in spite of me explaining. She keeps telling me that she is praying for me and that I must have faith I will be cured. She also suggests home remedies to make the drooping bet…[Read more]

I can understand what you’re going through because I was also taking 30mg mestinon as you were. In the beginning I was okay, but then my eye drooping got worse. I was afraid of having a cholinergic crisis if I took more . I then self medicated and increased my medication to 3 x 60mg daily. My cramps were really bad and swallowing difficulty just b…[Read more]

I was fortunate that my MG was in control with mestinon. But a few weeks ago, I had a lot of stress, and my one eye started drooping, and I had double vision. The only way I could drive was to close one eye, or tilt my head backwards to see through the drooping eye. I struggled, but managed to drive. We have a local WhatsApp group, and I was…[Read more]

Hi Ronald, it looked you were describing me! Hope we can carry on without more distress. Wishing you, and everyone the ability to cope.

Hi Gil, I also thought I was in remission once. In the beginning, my right eye was drooping, plus swallowing difficulties etc. I stopped taking pyridostigmine, really happy with life. Then 2 months later my left eye drooped, and even after taking my meds still remained drooping. Anyhow a week later it was under control. I realize that snowflake…[Read more]

I have had both shots of the vaccine, and am now waiting for our government to approve booster shots. My opinion is that some protection is better than none. Having survived covid and know how I suffered, I would hope that if I get it again, this would help to make it easier. In poorer countries, we accept whatever we are given. In my case it was…[Read more]

We all have fears at some or the other, even in normal life situations. But, my worst fear at the moment while writing this is that of suffering from respiratory muscle weakness, and dying because no one will realize that is what my problem is.
I have had an allergy problem for a long time, and often had breathing difficulties.  It was most…[Read more]

I have a GP, but in January this year, he tested positive for covid a day after my wife and I consulted him. We then both became ill. We had two covid tests which were negative, and were told by another doctor to take paracetamol and vitamins, D, C and Zinc. Within 10 days we were very ill and were rushed to the ER in need of oxygen. We were…[Read more]

By the way, just to clarify my use of different genders. The first doctor was male and the surgeon who operated was female.