Sudden deterioration
 

For the last seven months I've been doing pretty good. While my strength and stamina have been a tiny fraction of what they were pre-MG, it's been okay. I haven't needed my can once in seven months, can get through the day without a nap, etc.

Fast forward to eight days ago. I dropped like a rock. Need my cane. I'm having a very hard time typing this right now. I tried to complete a fifteen minute task requiring a minimal exertion an hour ago. I am shaking uncontrollably still. Don't trust my legs to walk...whole body is quivering. It's the second time this week. Related to the MG?

Did you get to the doctor to find out what is going on? What has changed? I have found that everything is eventually related to MG -- cold coming on, tooth infection, stressful event -- all ends up changing the course of MG from better to worse. Just wondering how you made out.....hoping you are better.

That would be the responsible thing....so no. :rolleyes:

December fourth I had surgery. They expected me out for forty-five minutes, complications kept me out for three hours. I've been a bit weaker since then but nothing like the last nine days.

The shaking stopped but I just tried to find some paperwork my wife needed for a phone call she was on and had to give up - the walking to the other room was too much. This is night and day from what it's been for the last seven months.

Truth is, a year of feeling useless caused a severe depression that I didn't recognize for what it was until psychosis set in and I started hearing things. Looking back, during that period, I didn't know what was the MG and what was the depression. Upon realizing what it was, I took steps to correct the problem and found a new normal level of activity - that was the beginning of the seven month period I mentioned. The depression has not returned, but the weakness has - in spades.

Hi angell,
I'm sorry for what happened to you recently.
It looks to me very similar to the relapse I had some years ago, I was doing really well, I was down to 5.5 mg Pred/d from a max of 75 and I had the bad idea to get a shot to prevent pulmorary problems and bang, a few days later, my MG problems were back at a severe level. 6 years after that, I'm still down compared to where I was before the shot.
You mentioned that you had some surgery in December , did you explain to your anesthesiologist that you had MG and did he (or she) took that into account to determine what type of products should be used?
It is known that MG is frequently revealed after surgery, beside stress, high level efforts or pregnancy...
Maurice.

*nods* Yes, in fact the first anesthesiologist cancelled sixteen hours before the first scheduled surgery when he discovered I had MG. The surgeon found another and he consulted with my neurologist prior to surgery.

Angell, Got a phone? Press 9-1-1.

You are near a crisis. You need to be in a hospital. Period.

I hope you'll get better!!!

Also, cold temperatures can do the same to some people that heat does in the summer. That might explain why you are getting worse, in addition to the surgery.

Annie

Thanks Annie, great to see you again. Internet has been a luxury that we have not been able to afford for much of the time I've been gone. Anyway, after your post I called my neurologist and explained my recent experiences; he has me coming in on Thursday now. It's a bit late for 911 now, but I'll try and minimize the risks until I see him.

Unfortunately, I'm still waiting on disability and the physical cost of keeping a roof over my head is high. If I get a regular job, then I clearly don't need disability (according to those who make such decisions), so I'm off the grid doing manual labor outside. It's a bad situation but I'm able to trade an obvious negative (manual labor) for an obvious positive (a roof over my head). Homelessness in the winter isn't good for my health either.

The good news is, I should get my hearing before the end of 2016...a mere three and a half years after I applied. While appalling, I can see the finish line from here, and am still hanging in there. Hope you are well.