[BIRD]

Hi, I am a new member and at a dead end per my neuros. I have RSD, CIDP,
Spinal stenosis and on and on my list goes. I am hoping to find help with the cidp. I am numb and tingling on my arms and legs, it also hurts. I have now been
dxed. with Ataxia. I can't walk or get in and out of my wheel chair alone, can' button my shirt or tie my shoe laces. I rely on my wonderful wife of 26 yrs. to help me. I can still think , I am still working 40 hrs. a week ( I am afraid if I stop working I will die) I NEED the distraction working provides. For the RSD I have tried many things including nerve blocks. I have had RSD for 5 yrs and felt I was getting better but about 2 years ago my feet started to get numb. That was the start of the CIDP. i have done the IVig, plasmapheresis, and steroids. The steroids did something to my pancreas and I ended up in the hospital for 8 days with a glucose level of 900. I was hallucinating, all bad stuff. So now I have diabetes to. None of the treatments have helped.I have been to the neuros at St. Vincents and theysent me to Columbia Presbyterian( both in Manhattan)
Neuro at Columbia said there was nothing else he would try. I am hoping I can get some info here that might help me. Thanks for taking the time to read this. Bird

[AfterMyNap]

Hiya, Bird! Sorry stuff is going so rough for you. Man, you sure have your hands full with all this. I have MS myself, but I wanted to welcome you from one newbie to another. Take care, good man.

[Darlene]

BIRD,

Nice to see here, and welcome. You will a number of people here to assist you. We here show a lot of comfort and listening for others. I am not that familiar with your situation, But again others will come and assist you.

Hope to see more of you around.

Darlene

[theoneRogue420]

Welcome, Bird!

You'll find plenty of folks here that can sympathize, rest assured. We can't necessarily provide answers, but we make a great "sounding board". (listen to me, lol! I sound like I have been here forever, when it's only been about a week... but that's the way this place is. You find yourself instantly at home!)

It's wonderful that you have such a loving wife to help you. My Michael has put up with more than I ever imagined anyone would want to. (He did finally, after 7 years of being together, say something to hurt my feelings today... but that's another story for another forum, lol) At least it gives others hope, knowing there are such kind loving folks out there who accept us for who we are, not running from us and our disease.

I have had rsd for 14 years now. I haven't worked at a legit job since 1993. I think you're right to keep working, even through the pain. I am going stir crazy, sitting at home feeling useless. So keep on keeping on!

[dahlek]

the autoimmune kind, and now have some new issues as well.
Do you have an Endocrinologist in your lists of docs yet? I've just started going that route because of thyroid changes and I'm learning that all of the endocrine system is one unique, specialized and very inter-related set of systems!
Check out the Peripheral Neuropathy forum and read the 'stickies' at the top. I hope some of these posts and sites can be of use to you! Don't despair yet. We just have to find the rite doc to put the problem-dots together!
Hope this all helps! - j

If you'd feel better, I can specifically steer you to some good CIDP resources..then PM me...click on my name and scroll down to the 'send a PM' and they type! Being helpless is truly frustrating! Been there! Hate it!

[DM]

Welcome Bird! So sorry you are having such a tough time of it.

I am pretty new here, but I have found so much info and advice and nice people here.. welcome again....

[Ceci]

Hiya Bird!

Throwing in my welcome too.

Ceci