MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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IVIg for neuropathic pain in legs ect

marycanelas
marycanelas
Anyone ever receive IVIg infusions as part of the treatment? I was on it once a week for 2 years, I did great, I have been off for over 1 year, and I have declined terribly. I have so much pain in my feet and legs, I have trouble walking, and shopping,ect, is not an option for me right now, which is awful because I have young kids. The pain runs and ruins every day, I wake up with it, and the pain meds just put a bandaid on it, and it wears off, and within a couple of hours, I am in agony again. All day I play this game, I hate it and do not know how I am going to continue like this. Its been over 4 months this bad, every day. Please share your stories with me if you have this too, or can relate. Even with a loving family, I feel so damn alone with this pain, it has become me, and I know I cant let it, but I am so weak from living with it for so long.
thanks for listening
Mary
brunob
brunob
I'm so sorry you are in such pain, I am fortunate that my pain is under control, my worst problem is in my lungs.
I am sending you positive thoughts in hopeing that you find some relief. Have you ever tried acupuncture? I have heard that is very effective in treating pain. I am looking for one in my area to help me in whatever way they can.

hugs and peace
Beth
deleted_user
deleted_user
Sorry u r in such pain. its my hands that are driving me nutso. nueropathic pain. never tried that. Hugs Marilyn
marycanelas
marycanelas
thank you for replying and for your support. I had an EMG today, it was tolerable until they had to do my face and neck. It was the nerves they needed to check for the Myasthenia Gravis. Wow! The neck was so painful, I was unable to complete it. It was a 2 hours test, so glad its over. I am starting IVIg this thursday, I will let you know how it goes. I hope it helps, I need something on my side.
Hugs
Mary
deleted_user
deleted_user
thinking of you. hope the ivig does the trick,. for bad pain i have a couple of back ups after playing mind games to manage it. yoga is fabulous for me, have been doing it for 6 weeks now. gentle massage - nowhere near your neck or face or head though, pretend i go surfing and only my head has any feeling the body is under water. will write more later. you will be fine with a good doc, music, dogs and family and friends get me going every day.