I just about had a heart attack

That dumb neuro just phoned today, and he said that after I left his office, he had to look over my file, and said that I was right, and that he hadn't done all the testing neccessary for eliminating MS. So he wanted to make sure he crossed all his T's and dotted all I's, (his words). So he is requesting a MRI of my spine.

Friday the 13, just might be my lucky day Or someone is looking out for me.

Sure made my day, Patricia

Good news about the MRI! At least you won't have to continue to wonder about that.
Gabe

Patricia, Prednisone isn't a medication you take for just a week and then abruptly stop. It is usually increased slowly, then taken for months, or even years. And if you come off of it, you are weaned off a little at a time. It isn't something to play around with. It's not like an antibiotic that you can start at full dose, take for a week or 10 days, and then stop! I'm not sure your GP knows what she's doing with the Pred! Gabe, have you ever taken Pred or another steroid? I had one very bad experience with steroids, was on Dexamethasone for maybe 3 months total. The neuro started increasing it slowly, then when I had such a bad reaction, put me in the hospital to increase it FAST, and began weaning me off of it again very slowly almost as soon as I got out. Mind you, I'm not real sure he knew what he was doing either!
Hugs,

I'm not sure about prednisone either

I was given this when my back became so inflamed that I had to be hospitilized, I can't take anti inflamitorys, so the dr gave me 25 mgs of pred for 2 days. This really helped immensly.

The dr I had back then said that it was ok to take it for short term. The amount perscribed is what a person with asthma or bronchitis would take. Say if they got a viruse or something.

Today I took the 25mgs, and I think tommorrow I will only take 10 and then 10. I am feeling better, but really am concerned about not having a dr who really knows anything. My biggest concern is crashing again, when the pred wears off.

I guess I'll cross that bridge when I get there. What do you guys do when your crashing? What are the normal meds given, other then mestinon?

Thanks again, Patricia

lois, my husband just had to take that dexamethason for a adrenal test. They were looking for cushing syndrom. I can see this having a bad reaction for someone with MG, espeacialy because its directed at the adrenal gland to surpress ACHT. I think that any one with energy problems doesn't need to have there addrenals screwed with. Why did they give that to you?

Patricia, I'm not sure why he chose that corticosteroid as opposed to one more widely use, like Pred. He was, like most neuros, NOT an expert in MG. Well, at least he didn't kill me, though I never did recover my pre-crisis strength and stamina. Plus I've had breathing problems ever since the crisis, something I didn't have before. One thing in his favor is that he accepted the diagnosis of MG, without thinking he had to re-diagnose me, like so many other neuros do. It's as if not a one of them can accept the diagnosis of another.
Hugs,

Sorry it took me so long to respond...

Yes I have taken Prednisone for Myasthenia. it is very tricky - can improve MG by suppressing Immune system but can cause weakness. It would be good to see someone familiar with MG because they would have a little better idea how to deal with it. i was on Prednisone for 8 months and alternated doses 5mg one day and 40 mg the next...I started at a higher dose every day to get things under control, then tapered off on the low day until I was down to 5mg...the belief is that by alternating high and low dose days there are fewer long term side effects. When I went to the University for tests they took me off all of the Prednisone quickly (over the course of 1 month) - that was too fast! I was very weak, achy, exhausted, and it took a long time for my adrenal glands to kick back in.

I know they use high doses of steroids when people are having a breathing crisis and it is short-term.

You probably need to talk with your doctor about dosages - not sure if you were planning to reduce the dose baased on his order or not...I think there are specific guidelines about how much the dosage should be decreased at a time.
Good luck,
Gabe

Thats what the dr told me. Maybe its doesn't for some, maybe I don't have MG, maybe I have MS, maybe I don't have that either??? I do know, I have something.

Well yesterday, and today I only took 10 mgs of pred. I'm really feel bad. So achy, I'm having muscle spasms in my legs and back. And there absolutly know energy to do anything. Its seems no amount of rest will make it better.

I guess the end of this week I'll half to go see the dr. again. I don't know of any dr in my area that treat MG. I am going to wean down on the pred though. One more day of 10 then down to 5.

I try not to take any kind of meds, but sometimes you just have to, and that sucks. Anyways one day at a time, right I did read a while back, that people that have CFS take 5 mgs of pred everyday to help support the addrenals, apparently this was safe. I really wonder if anyone knows whats right. Maybe I'll ask the dr to phone the MG specialist in Vancouver and she can recommend some type of treatment. I don't know

Anyhow back to bed. Have a nice day everyone, Patricia

Please be careful with the steroids. They can induce a severe weakness in M.G. Please do not taper on your own also as tapering too fast can send you crashing. I'm sorry but to give the dose you were given and if I read correctly, is not the way to prescribe for M.G. as far as I ever heard.

There is an article on pain in M.G. patients that I will post. I have pain in my muscles and severe when pushing it. It was funny or sad to me reading the article, about how it is overlooked. I think maybe this doctor listened. It seems to me if it is not written in the classic textbook and one complains, bingo well it just cannot be. Reading about all the different m.g. patients it seems to me, I don't think it is at all so understood, as they say it is. Some articles are around about different or more than one process going on.

Stick to your guns, it is your health. I wish you well.
I cannot post what I think of neuro's, not all but enough for my liking. I will post the article and also coming down off steroids can make you feel crummy and can flare symptoms. Please speak with your doctor about the way it was prescribed and taper. Also with antibody or Musk testing any immunosuppresion can affect titre results.