Thanks guys! I really appreciate your input!

I talked to my obgyn yesterday, and he said that he’d like to give me an epidural, so i asked him if he could have the anesthesiologist take my spinal fluid at that time. I’ll find out what they said in about two weeks.

just hate this waiting period and wonder if it is even necessary, but i am very grateful that i can pretty much take care of myself and my children now, with minimal help. My husband does most of the shopping because i can’t walk that far without becoming really short of breath, and almost collapsing with weakness. And he doesn’t complain about what i don’t do, since he knows that if i am able to clean, then i will.

Jerimy, I live about 2 hours north of Ann Arbor, in rural central michigan, about 20 minutes from Central Michigan University. I plan on asking my doc to send me down your way after i have the baby. I was very happy with the treatment my son received at U of M last year, after almost dying from a rare illness that had him laid up for 6 months.

I hope you are doing well and im thankful for your dedication to helping others. It sounds like you have a full plate yourself! Take care!

hello, gene. you seem to have this gbs gig down pat from all i’ve read on the forums…i welcome your knowledge. i start over with a new neuro on the 26th, an emg / ncv is ordered before i see the doc. (orig. neuro in hosp. isn’t on my ins. plan). i worry that time’s a’wasting between dx and treatment regarding recovery. other frustration is that i’m a nurse and docs expect me to already know everything about gbs. (my husb. told the 1st neuro i’m a nurse). experiencing this is very different from knowing about it from a textbook. orig. neuro first said the pcp’s tx of viral inf. with decadron shot and oral prednisone made this a mild case, then on phone Thurs. said maybe pred. tx masked test results and sx’s since i’m weaker now than when i left hosp. (out 1 wk ago today).

Thank you for your kind welcome and the guidence into using this forum. I have been reading the adult forum page and am getting my bearings. I saw your post with the photo in the hospital. Gosh, I guess we all have memories and imagine how we must have looked, but I don’t have a photo of myself. I don’t know if that is good or bad. I didn’t let my grandaughters come into my room until most of the tubes were removed. I didn’t want them to have that memory. (3 little elementry age girls:) ) You are right – the lines are blurry with Miller Fisher GBS.Again, Thanks for the welcome and I hope to get and give more input in the future.

Alma

Thank you all for your kind words. I do have notes of dates and symptoms but I will definitely put them into a journal order.

Since I am in “limbo” until February, I almost feel that this is a dream I don’t want to be in. I worry about not getting treatment until then and then about what I am going to be getting. Does anyone just wait with the hope of spontaneous remission? As I read the posts (especially your reply Gene) it seems that the longer one waits the worse it is for the body to regenerate cells but as I said I am pretty sure I have CIDP its just not “official”.

Deb, my gums were my first sign that was out of the norm as my dentist and periodontist could’t find anything wrong. I have great pain from time to time in three different teeth when eating. I do specifically remember a bite on my foot, then 24 flu like symptoms with a temp. of 100. After that the pins and needles and muscle spasms started. I will add all those in the journal as well.

I look forward to talking to you all in the future and I will keep you posted.;)

Better health to you all,

Taryn