keep the faith

March 6, 2011 at 10:48 pm

welcome wendy, such good things are being discussed here! i was dx in 2009 w/cidp/anti-mag…started ivig till insurance stopped it 8 mths later, went down hill and after 6 mths i was walking with a cane and in tremendous pain. i got insurance to agree again to treatments and greatly improved but had to switch dr. due to insurance change. i know this sounds unbelievable but… after 6 mths of more treatments, i had just received a letter from insurance co. APPROVING me for another 6 mths and a port when my neuro called and said he was not going to approve my port or treatments!!!! MY DOCTOR!!
so i missed a treatment beacause he said he did not agree with 1st diag. i asked him what he thought i had and he said “fibromyalgia”. i guess after 6 mths he never bothered to read my blood test!!! he sure did know how much an ivig cost the ins. co.!! i fired him and lucky for me found a neuro just as knowledgable and kind as my 1st neuro. i WILL GET my infusion tommorrow.
i do have to say, this is the worst i have felt…ever…! i am so glad to hear others have brain fog. i’ll be in the middle of a sentence and totally loose my train of thought…..and i feel like if i taped my voice, i wouldn’t recognize it was me talking. after dr. A cancled out on me i had shoulder surgery for a torn rotator cuff in jan. which i am sure has contributed to my down-hill spiral. be careful out there wendy, get all the help and support you can get.
the people on this forum are the BEST. there are good docs out there who really do care!!! but BEWARE some have ego’s so big i’m surprised their heads don’t pop!!
god bless to you all
ms. judy
p.s. i will officially retire on 3-1-11 (from my job that is)


Keep the Faith

April 27, 2010 at 10:38 am

Len, It has now been one year since I came down with GBS that practically took my life…(April 20, 2009). It kept me in the hospital for (4) months on a ventilator and G-tube, my heart rate went from 134 beats/Minute to 20 beats/minute, thought I would never survive yet be able to walk again. But the Lord’s grace is sufficient. Could never have done it w/o Him. Prayer, time, Physical therapy and eating healthy are the only advice I can give you that can help get you through this tough time, but eventually your wife will recover, just keep the faith, be there for her because its going to be a long road to recovery…its been 8-months since I left the hospital and I am still not 100% recovered, still can’t feel my feet or bend my toes and continue to have nerve pain and numbness in few fingers and exhaustion. But I am going to college to be an optician have completed 4-months and got 4 more to go until I get into The College of Optometry. The best thing thats happened is my life has change 360 degrees and look forward to a new way of life. Everyday I think of where I was to where I am and grateful to God for His wonderful Love….Can’t do many things like run, but I still have life!

keep the faith

February 21, 2010 at 2:29 pm

Great news you two!! Will continue to keep praying for you both. Big hugs
to both of you. God does work in mysterious ways.
Ms. Judy

Keep the faith….

June 20, 2008 at 10:37 pm

You know I am no expert on this., but ivig is only one part of many possible treatiment routes… If you feel physically you are having relapse issues get in touch with the doctors… As far as the mental side, we are here for you as we are all dealing with stuff as well, and know how easy it is to get down… I try to remember how far I have come this last 8 months, and how lucky I am that things are not worse, or that I have other diseases, etc… Try to focus on who you are, and build a positive support group around your base……Also, there are medicines to help deal with emotional stuff, and the pain…. I personally like using your inner strength rather than what comes in bottle form.., if at all possible… Good Luck Caryn, and keep posting as often as you like,….deanop

P>S> Hey Jim, that looks like Duluth, Minnesota take away 50 or 60 degrees F…!

Keep the faith

August 30, 2007 at 12:32 pm

Hey Rob,
Just like the others I agree, your dad will walk again. Perhaps with an aid but if he can hang in there it’s a great possibility. I was told after 5 weeks in the hospital there would be a possibility I would never walk only I never heard the doctor, only my family and friends did. So when they were getting close to releasing me and I was still on a catheter I took it upon myself to just get out of that darn bed I was sooo tired of. The nurses were mad but the therapists were glad because that said they didn’t realize I was stronger than they thought. Sure I fell but I took 2 steps on the way down! Anyway, I don’t recomend that! But I do recommend keeping positive thoughts around your dad you see nobody told me I was never going to walk again I always thought I would so it was no surprise to me. By the way I’m 5 years post GBS now CIDP and still on a cane.

Just Joyce;)