I started falling in september 2012 then paralysis oct 3 2012. I spent 14 months in a nursing home (4.5 learning to walk again) the rest building strength and still learning to walk. Im doing really good now im not even using a walker now as of 6 weeks ago. Now my problem is my feet and legs were beginning to go numb and tingling more often but now its all the time to my knees. Im supposed to have a neuromuscular appointment tomorrow but my moms car isnt running properly enough to drive 2 hours to lexington. So idk what im going to do.. my pain is increasing and im getting "clumsy" or stumbling more. The drs office told me to wait til my appointment and not to go to the ER unless paralysis set in again. The hospital locally didnt believe I had GBS they said it was all in my head. Sooo I dont know what to do. Im trying everything to make my appointment tomorrow.
How are you, mistilynn? I apologize that your discussion was missed initially. Please give us an update and let us know how you are doing.
Actually, I'm not doing well at all. The numbness is up to my hips now, the pain is unbearable. I have to use the walker again snd I see a specialist on Aug 5. My new neurologis said I'm definitely relapsing or have cidp. So scared.
Oh dear, I am so sorry to hear that, Misty. You may wish to join our CIDP community. There is a link to it on the righthand column of the Main Page. You are welcome to belong to both groups. Is IvIg a possibility?
I dont know what this new neurologist is gonna say, I'm startimg with all new doctors.
I suggest heading to CIDP before your appointment and reading discussions. It might help you form the right questions. It is very helpful to be armed with information in a case like yours.
I cant find the CIDP group
Here is a link: http://www.livingwithcidp.org/