Never a dull moment...........
 

Erin,

I am really sorry you are going through all this - - especially the pain.

If your MG is under control. does that mean that you can begin to change your meds so that you might have fewer side effects? I mean I know you can't just stop...but are they suggesting that there is any benefit in beginning to taper off?

As you are able, pls keep us udated. There are so many people here who care about you and miss you. Wishing you some pain free time!!

Sue

Hi ((((Erin))))

I'm so sorry you are going through this at the moment, it really sucks!!!!!
I think of you often, and you really don't need anything else right at the moment.
take care

Sending you good vibes
 

Hi Eri,

Eventhough I've only been on this forum for a little less than a year, I feel like I really got to know you. In the beginning I was so confused and every time I read one of your caring and informative posts, I felt my journey was shared by others.

You've dealt with so much and you deserve a break (not literally LOL) -- and NOW.

I hope things take a turn for the better and you get some relief from the pain. Know that you are in my thoughts and prayers.:hug:

Kathy

Erin;

I hurt my back about a year ago. I had steroid shots that did not help at all. And we have no control over muscle development (something my pain dr. did not understand). Physical therapy to improve my core muscles was impossable.
I talked to my Neuro because I have severe pain in my neck and shoulders either from the MG or the side effects of meds and put him in touch with my pain dr. I am now on a med for pain that my Neuro approved and I can not tell you how much it has improved my quality of life.
Maybe your Neuro will not prescribe something for your pain but if you can find a pain dr. that understands your desease he may work with your neuro to prescribe something to relieve your pain.
Good luck.

Erin;

go to - http://newswise.com/articles/view/507934 The article is 6 yrs. old but rings today.

Erin, I'm so sorry you are still in such pain. Keep your spirits up. There has to be something someone can do for you!

I wish I had time today for some research. There has to be some kind of new therapy for brittle bones out there. Or a pain doc who can take a holistic approach. Could you have some kind of collagen disease or predisposition? What if another condition is underlying your difficulty with Pred? I know you've had loads of tests but if they don't do the right test or look in the right direction, they could miss something.

My Dad had MRSA. Not fun. He lost a toe to it. Are you on acidophilus? If not, I sure hope you will go on it indefinitely. Pred can make it hard to absorb nutrients, as I'm sure you know. Are you on flax or fish oil? It might be worth it, if you haven't already, to see a nutritionist.

I hope you will get better at some point soon. It's good that your MG is "stable" but you aren't! Take care.

Annie

Hi Sue!
 

Hi sweetheart!:D
THank you so much for your kind words...they mean so much to me!:hug:

I just need to realize how good I really have it, but it is hard to do sometimes....

What are you up to?

They are going to reduce my pred, but some of the damage has been done already - I have drug induced addisons, brittle bone syndrome and can no longer walk, but at least I have my scooter and a dr that really cares.:D

I AM on Forteo for my weak bones and have had ramps and pull up bars installed in my house but it is hard not being able to walk anymore.

I think once I lose the weight I will feel a lot better!

I have missed all of you so much but did not want to be a downer. I've been reading most of the posts and am so happy to see new members!

When you get some time, please let me know how you are!

Love,

ERin:hug:

Hey Erin, good to hear from you, but sorry you are not doing so well.

I have been putting on weight too, I hate it. I don't take Prednisone though which I know puts weight on most people.

I need to walk more to help with the weight, but sometimes I just don't have the energy.

I'll keep you in my thoughts.
Trish

Erin, Hi! I'm one of the newbies. I'm sorry you are having so much pain right now. I have a lot of trouble with pain too. Besides the "possible MG", I have something else going on with my body.

Anyway, it sounds like you have been through a lot with the surgery, MRSA and MG on top of it all. I'm sure that has taken a toll on your mind as well as your body.

Even though I'm a newbie, I've read through many of the posts. I've read a lot of yours and you offer so much help and encouragement to others. Don't feel bad about posting about your bad days, others want to return the favor and help you out.

Take care.