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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Hello again!
Hello! How are you today? I say today, cuz' this darn disease is NEVER predictable! Things are great here! My neuro reduced my steroids to 15 mgs. a day - yippee! I was up to 80 mgs. a day a few months ago and it drove me stark raving mad! I was manic, waaaaaay manic and ate everthing in sight - I"m not kidding, I was prolly up to 5000 calories a day. Fortunately, I only gained 16 lbs overall, but it's still a very drastic change.
Mestinon never made me drool, though my neuro warned against it when I started on it. It made me feel great, but I still had my crisis after taking it and steroids were the only way to keep my body from shutting down literally - my antibody count was @ 600 when I was admitted to the ICU - off the charts , but Dr. Ibrahim TRULY saved my life - Ok, I have a slight, totally harmless crush on my neuro - hero worship I guess!
I am so sorry to hear you are going through this. It will get better!
So, you're a musician? I would love to be so talented! Karaoke is about as "musical" as I get. We are going out this Friday. My hubby is so excited, b/c I really haven't left my house except to work of go to the doctor. People are always so shocked when they see the "new" me.........That is pretty depressing. Iknow people mean well, but they don't seem to realize how hurtful when they make comments about my weight, though I can now swallow, eat and breathe - always a GOOD thing!
Let me know how you are when you get a chance!
Hang on there!
Erin
Quote:
Originally Posted by KTunes
Thanks Maurice and Erin. I am taking mestinon only, 180 mg per day. Seems like a pretty low dose, but its making me drool like a rabid animal (which I have to admit is a little bit amusing). I am a singer/guitar player, so this problem with my hands and arms and slobbering is especially depressing. I am really looking forward to the moment when I start slurring my speech and dropping my guitar onstage - they'll all say I'm on drugs.  Had to cancel a charity performance tonight and I'm really bitter about it.
I know I need to give it time, but the medication does not seem to be working and in fact makes me feel really horrible about thirty minutes after taking it. (Feels like the mg symptoms, only more weakness than before I took it). I am in a lot of pain from trying to keep my head up. It seems worse now than before I starting getting treated. I am willing to keep this up for another week but if it doesn't start making me better soon, I think I'd rather not keep taking it. Steroids are out of the question - had to do that once for a back injury and they made me nuts.
Erin, I felt terrible reading about your breathing problems and ICU visits. I'm so sorry for you. That must have been really scary.
I'm learning to stop being angry and self pitying. I know there are many worse things out there and in some ways I really dodged a bullet. (MS or brain tumor would have been a heck of a lot worse.) Your support has been really helpful; please stay in touch.
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Erin
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