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Old 06-06-2011, 03:35 PM
Rybowski Rybowski is offline
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Join Date: Jun 2011
Posts: 5
10 yr Member
Rybowski Rybowski is offline
New Member
 
Join Date: Jun 2011
Posts: 5
10 yr Member
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Thanks to all for posting your experiences, and a special thanks to Swallow123. I find myself in the maybe he does maybe he doesn't camp right now. I'll start from the beginning.

5 or so years ago- After a particularly stressful time at work, my eyelids drooped. This lasted about 4 weeks before bouncing back. MG was suspected, but nothing much was investigated.

3 years ago- Collapsing spells. Strong emotion such as sadness or laughing would cause me to lose all muscle control and collapse to the ground. Usually laughing really hard caused this. I tried to fight it each time, but each time I would lose and eventually just have to fall. This started after my grandmother's death. Neurologist diagnosed me with isolated cataplexy and called it a day. This cleared up after a few months.

Inbetween these 2 incidents I had troubles with muscle control especially when laughing. If I was holding a glass, my arm would just drop like a rock sometimes, but for the most part it was manageable. Came and went, so I didn't really worry about it.

Last year- Woke up with double vision. Saw my GP, opthamologist, neuro opthamologist and then a neurologist. MRI's x 3, CT, and lots of blood work all came back negative. Multiple sclerosis was the suspect. My double vision went away after 6 very hard months, but I was left without the ability to voluntarily move my eyes left or right for an additional 4 months. The scheduled me for a spinal tap.

2 months ago- a couple of days before my spinal tap, I started to feel my muscles shake again when I would make demands on them. The day before the tap I awoke with extreme weakness in my body, mainly in my shoulders. It affected everything I tried to do. Took the bus to the doctor. Almost didn't make it off the bus as the weakness nearly overwhelmed me. On his advice, I checked myself into the ER at St Pauls the next morning. I was admitted into the hospital for 4 days on Mestinon and IVIG treatment. I started to improve a tiny bit each day. The resident neurologist was certain it was MG. Given 60mg mestinon x 3 a day. Just under 2 weeks after leaving hospital, the weakness was gone, stopped taking mestinon, and got back to my life as it was.

3 days ago- saw the MG specialist in town on a check up as the IVIG should have run it's course. She said everything looked good, but everything that's happened does not fit MG. ACH and single fiber EMG tests normal, thyroid levels normal, thymus unremarkable. Nodule on my thyroid that was biopsied while in hospital, but no news on that yet.

Last couple of days have been a bit worrisome though. I feel some familiar shakes coming on. No weakness per se, just the feeling that I am over caffeinated. A little trembling when I laugh. Took a mestinon today just to see.

I hope it's not coming back. Although, I have been able to trace each instance to a major stress, which should help me keep a little control. Maybe. I don't want to go back into hospital, and I really don't want the IVIG again, but I'll do it if I have to.

2 things are getting me through. My girlfriend stood by me every day in hospital, and has been a huge help. My family as well to some extent, but they have decided to become google Doctor's, and like to give me advice on how to deal with it. My Dad thinks I should take up running. I don't think he knows what MG really is. The other thing that is getting me through is the big dumb smile on my face. I am trying my best not to let it bother me, and just accept it as it is. We shall see what happens in the coming weeks I guess.

That's me so far. Thanks to everyone for sharing their stories, and I hope some of my experience can be of some help to someone.

Thanks for listening,

Ryan
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