Myasthenia Gravis

[txtravelgal]

I started symptoms about three weeks ago and started the medication ( 60 mg tablet 3 times a day) almost a week ago. So far, I can't tell any difference in my double vision. Am I expecting too much?

[jacks_daughter]

my dad has been on it since the middle of January, and while he thinks the med helps some... his vision hasn't changed at all. Unfortunatly, all of his doctors say the vision is the last to get better

[txtravelgal]

Thanks so much for your reply. I saw a new neurologist yesterday who told me to double the amount I am taking for a week. He said that if it isn't better in a week, that the medication isn't going to work, and that we will have to try something else.

[jacks_daughter]

best of luck! let me know if this works, the double vision is what bothers dad the most

[txtravelgal]

My vision is OK when I wake up but gets worse as the day progresses. It seems that it starts doubling a little later each day, so I am optimistic that it is really getting better. The gastrointestinal discomfort is really bothersome.

[karandi]

Hi - When I developed and was diagnosed with M.G. I was prescribed Pyrodostigmine and Azothioprine and my double vision disappeared within 48 hours. However I was alergic to Azothioprine and this was stopped. The Pyrodostigmine caused severe bladder and bowel incontinence and Diarrhoea (not a pleasant combination). I was on this medication for 18 months when I pleaded with the Doctor to be taken off it and the side effect problems went.
However, I believe the M.G. attacks are caused by my annual Influenza vaccination as - Double Vision, muscle paralysis in the face and limbs, all the M.G. symptoms occur 10 days after the vaccination every year. Last year I did not have the vaccination and have been clear of M.G. symptoms for nearly 18 months.
When I had an attack of M.G. twice I was hospitalised for Imunoglobin Replacent and was prescribed Prednisolone 60 mg daily and this medication caused Insomnia, loss of my sense of taste and worsened my Diabatis and which I have not yet recovered from even though the Prednisolone was stopped last summer. I am left with great difficulty in walking as my legs (or joints) are so weak and the medical advisors are at a loss to explain or treat. Otherwise I feel perfectly healthy.
I have a great respect for my Doctors but feel they lack knowledge of M.G. (a fact they admit to) and are still researching the condition with not much success.
Good Luck
Regards
Ken Robinson (U.K.)

[txtravelgal]

Hi Ken, saw my doctor yesterday, and since the Pyridostigmine hasn't solved the double vision problem, I am to have three IVIG treatments next week. He said there are few side effects, but can you tell me what you experienced?

Thanks so much

[karandi]

Hi Travelgal - I was on half the dosage of Pyrodostigmine you are having. i.e. half a 60mg tablet three times a day. I don't know what IVIG is that you will be having unless it is what we call Imunoglobin Replacement.
My double vision cleared up with medication within a couple of days of being diagnosed but twice following later attacks of the symptoms I was in hospital for 5 days and each day I was drip fed (into the back of my hand) for six hours each day. Not at all painful but very boring - you will need plenty of reading material.
I was hospitalised for other more serious problems which were first the collapse of my respiratory system ( my chest muscles were paralysed) and secondly when my face and neck muscles were paralysed. Relief from these symptoms was immediate after the first session.
If you would prefer to make more direct contact with any more concerns my e-mail address is [moderator note: e-mail address has been removed]
Ken

[educator]

Did you mean to write that pyridostigmine worsened your diabetes? Educator