Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was "flat" after the accident. I couldn't even remember the name of my insurance company.From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?). When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.In fact, if all goes well, I am planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'To: Neurosarcoidosis Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi, Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it? KP Quote Link to comment Share on other sites More sharing options...
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