Thanks both.
Yeah ill try the distraction, but i dont know where to find it
I really have the feeling my head is to big for my skull.
I don't even get a rest when Im sleeping, my dreams are totally messed up.

I also believe this prednison isnt good for my mg: first because I have severe stress all the time, and stress isnt good for mg. But I also see my muscles are slowly declining, especially my arms. And my belly and head are getting bigger everyday, o I hate it so.

I really am suffering and i really wish a doctor would help me. I asked so many, most of them say they wish they could help me but it is to difficult for them. And my neurologist thinks im to "good" for ivig, but to "bad" to lower the prednison even a tiny bit. And the psychiatrist still hasnt called back.
I just feel akward, fysically and mentally and well,

I was on 60mg of Prednisone and was going down hill fast. I was at the point I could barely walk. I went to see my neuro-muscular doctor who I see about every 6 months. He immediately said I had to get off Prednisone right away. It was killing the muscles in my legs. He dropped me 10mg that day. He said Prednisone will do one of 2 things. It will be a wonder drug for you or kill you. He said I was one of those people that can't take it. I am down to 20mg and my legs have recovered. We are now at the stage we can only reduce 2 1/2 mg at a time so it is going to take a while to get completely off. Of course I had the usual effects fat face, hump on back of neck, water retention, most of that is gone.
Mike

Raven

What is dose of prednisone you take?

I am listening, and I do understand about the prednisone. I was in a trial study, and had to use it on and off. Not so hot, and definately mood altering. I really wish your doctors would take another look at you, talk together, and try something else. Can you get in for another opinion? It is like they are just shaking their heads at at a loss as to what to do to help you. There has to be some other kind of help. I wish I knew more about mg. to help you.
I do know about prednisone, which is why I have great empathy for you. I do care. I am one of these people who do read. I am going down on morphine, a horrible process, and use it as a distraction during episopes of sweating and chills etc. Most of the time it works. I hang it up for a couple of hours, and just go to bed with my book. Hope you can find that distraction to help you through this time. ginnie

Hi RavenC

Some possible ideas:

1) Print out the responses in this thread about Prednisone (with permission from the posters) ask to set up one emergency appointment with the neurologist to talk about the dosage and effects of your medications. You can also ask your doctor for a referral to another neurologist or set up a private appointment in another town/city if you can, which may end up being worth it.

2) In case you haven´t tried, ask for the appointment with your psychiatrist to be brought forward. It is possible to do that.

3) Perhaps see about changing your doctor. If you clash with a doctor on core philosophies and core values you will only ever get so far - and with as many symptoms as you have you certainly don´t have any extra energy to use on anything else. It´s tiring enough to carry your own backpack on a really long hike – never mind someone else´s as well! With a good doctor it feels like it is not that much ´work´- it still can be a really long hike - but without the backpacks, and that makes a BIG difference!

It took lots of trial and error to find my new doctor. He ignored everything that had been said in the past, prescribed me Mestinon – said it was a really exciting thing that it was working, referred me directly for SFEMG testing without consulting the neurologist who said I was just lazy and told me not to worry that we would ignore him and find a new one!

That´s what it should feel like, I think.

Keep in touch with your progress

Anacrusis

Thanks all
Well, yesterday I had an awful day. I really had to drink enough, as not to get dehydrated! I cried so much.
And I think I'm getting an eating disorder or something, sometimes I just can't stop thinking about food...I crave weird stuff and I HAVE to eat it, I'm so hungry and think about all the foods. And then I cry because I already gained so much weight, and the stretch marks and my huuuuuge face and ....

@Ginny; yeah already been to a second opinion, he also just says "prednison = good for mg". They just only look at "their" disease. But he also said trying another medicine (ivig), but my own neurologist won't try it. And I can't go and get the other one to be my neurologist, because it's to far from where I live.

@Ana: Yeah, I'm already thinking about changing doctors...because well, I really think this is not the way for me. But I've already seen so many, and don't want another disappointment you know? But the end of this month I have an appointment, and Ill take my whole family with me!!!
I called psychiatrist yesterday, "we will call you to make an appointment...if we accept you". So...waiting.

I so know about not wanting to go try and find yet another doctor. It is the Gerbil wheel of going round and round, and you want to get off the ride.
If it meant your health and sanity, travel, do what you must to have better quality of life. I interviewed ( notice I said I interviewed) 4 pain specialists before I found one I wanted or trusted. One was so full of himself I received a 20 minute lecture, on the dangers of medications, and I never got to say a word. NOWAY....I don't want you to stop until you find the right combination of doctors that can help you. That IVG I have heard of, and I think there has been success with it. I know you have done the research on it. Did your Neuro give you a reason why he didn't want to try? I have two docs. now that don't agree. I tend to not do anything unless I get them in agreement, and yes I push them talking to each other. thats a miracle!
I wish you better days Raven. We may not have the same conditions, but I do have empathy for what you are going through. I do care. ginnie

I would suggest getting some actual psychiatric help. Your symptoms may or may not be caused from the meds, but in any case, with a good psychiatist and counselor on board, you could get someone to help advocate for you with your neurologist and provide coping techniques for you when the anxiety gets bad.

There are instances of steroids unmasking bipolar disorder (it happened to the newscaster Jane Pauley) and other psychiatric problems. Your situation sounds pretty complex, so it might be time to call in the experts.

Benzos are a like putting a bandaid on the issue. It covers it, but the wound is still there and the bandaid will wear off eventually. Drinking alcohol is also not helpful in the long run. Both can be really addicting and not particularly good for MG.

Good luck!

Probably one of the biggest things that a psychiatrist can do is to figure out whether the problems are caused by drugs, and if so, which drugs.

Yes, I agree with Southblues. However, sometimes simply eliminating the drug does not eliminate the symptoms, so in that case, having someone on board with knowledge on the subject could be invaluable. Life's too complicated as it is to live in emotional agony if not necessary.