[livingwith]

I have MG and can no longer hold up my head. The disease developed very quickly. One month I was functioning normally, and the next, my world had been turned upside down. I am a retired teacher and had a much different view of my retirement years. Learning to cope with this disease has been a challenge.
Initially I had fatigue and back problems which were treated with pain medication and physical therapy I have been healthy my entire life, but weight gain and edema had become health concer...Read the full article

[karandi]

Hi - I developed MG during 2003 and for the past 5 years I have finally concluded there is not much known about this "disease" (or illness or condition). I have had an attack of the symptoms every November for 4 years. I am in the habit of keeping a record of my medical history for many years and decided to try and investigate my situation myself - after all I am the one living with it every day 24/7.
My first "attack" in 2003 began with double vision and a creeping paralasys down the right side of my head (right eye first) then twodays later my lower face (jaw, mouth and an inability to speak properly) then across my face to affect my neck (a drooping head) and my left shoulder. As it was the first time my Doctor referred me to a specialist neurologist at the local hospital which took three months for me to see. By this time all the symptoms had gone except for the double vision. Dignosed with MG prescribed medication corrected my double vision within 48 hours.The medication was pyrodostigmine and azothioprine. The Azothioprine made me nausious so was stopped. During the following six months
I had checks galore including X-rays, MRI scan, CT scan, Neurophysiology tests and blood tests.
November 2004 I had a mild attack of all symptoms which dissappeared after a few weeks.
In November 2005 all symptoms returned with a vengeance but in addition my chest muscles were affected and I was rushed into A&E with respiratory failure. I was givem Imunoglobin replacement which was a course of drip fed (into the back of my hand) Imunoglobin for 6 hours every day fo five days. In addition I was put on 60 MGs per day of Prednisolone. One week later was again clear of MG symptoms but medication continued.
November 2006 again struck down with all symptoms and hospitalised for another 6 days of Imunoglobin replacment with great results.
This where I decided to carry out my own investigation.
I believe that my MG was caused by the sudden and unexpected death of my wife in May 2003 (i.e. Stress). I was 68 and we had been together for 50 years. I believe I had some kind of nervous breakdown - I live alone so have no witnesses etc. I also recognised from my records that each attack happened 3 weeks after my annual vaccination against the flu virus. When I mentiuoned this to my medical advisors they were somewht disbelieving. So last year October 2007 I did not have my usual vaccination (I have had it every Autumn for over 40 years) and for once I did not get my expected attack of MG. All my MG medication has been stopped.
That is my story and think I know more about MG than a lot of medics. I am now 73 and since 1998 have had diabetis type 2 and an underactive thyroid. The medication I was prescribed for MG made my Diabetis worse for which there was even more medication. The Pyridostigmine caused bladder and bowel incontinance and the prednisolone caused a complete loss of my sense of taste and made me an insomniac. The effect of the prednisolone has left me with a reduction in my sense of taste and I still am not sleeping as well as I used to. Otherwise I do not feel unwell.
I also cannot understand that where I was twice put on a five day course of Imunoglobin Replacement, in the States it seems routine to have just one or two days and often without any beneficial results.
Hope this helps with your problem especially if you can get a five day course of Imunoglobin Replacement.
Good luck to you - Ken Robinson (U.K.)