JeanBell,

It took 2 months to get a correct diagnosis. The diagnosis from my EMG was CIDP; my 1st neurologist [B][U]decided [/U][/B]that it was vitamin B-12 deficiency. My symptoms became progressively worse over the 2 months I was being treated for B-12 deficiency.

From our shared experiences the process to a correct diagnosis sometimes is long and you’re correct the protracted diagnosis should be “unacceptable”.

I had a hard time first figuring out that I had a neurological issue instead of a circulatory problem. Thank God (literally) I “happened” to cross paths with a long time friend who told me the problem sounded like it was neurological and I should go quickly to Baylor College of Medicine in Houston.

Two months seemed like a long and unacceptable time to me, but I now realize, relatively speaking, my diagnosis was quick.

I feel education (medical and the general population) would make a difference. I’ve found several medical personnel don’t know much about CIDP and some had never heard of it.

I traveled to North Carolina last year to participate in the Miracle Mile. One of my objectives was education, so I talked to my local newspaper and the Charlotte news reporter who emceed the event last year. The local newspaper published an article about me, CIDP and the miracle mile. Several people contacted me about the article and CIDP. Maybe it wasn’t a great contribution, but if it makes a difference to only one, it was well worth the effort. The Miracle Mile itself an amazing educational tool.

Sorry for the soapbox … but imagine what our combined efforts could do towards getting the word out.

Gary

Congratulations Alice! Great article (in spite of the inaccuracy … LOL). The whole press thing is kinda fun (I had a local newspaper write an article about me attending the Miracle Mile in North Carolina last year and CIDP). I had 3 objectives in mind with the article … educating people about CIDP, encouraging those who have autoimmune disorders/neuropathies, and giving Glory to God for what He’s done in my life. I felt the article achieved all three.

I hope your article accomplished all that you intended. You certainly have educated people about the stem cell work that is going on at Northwestern and I think you’ve given a lot of very sick discouraged people hope.

Thanks for continuing to be here at the Foundation Forums and I’m so glad you’re doing well.

Gary

Happy New Year … and my wishes for a blessed and healthy 2011

Gary

Terry, So glad you’ve re-joined us at the Tavern.

Nope, never noticed a headache after PE.

When the CIDP flares up I frequently get a headache. Makes me wonder what the antibodies are doing in my brain. I had a headache the last two days before my last PE. At the same time numbness was returning to my toes, bottoms of my feet, fingers, and lips (fairly standard for me).

I’m right as rain tonight, although still wiped out from the PE. I went to the gym this morning and had a light work out and had a busy shopping day. My wife and I also went to “The Tourist”. It was slow moving, but a good movie.

Good luck with the Firewater. Part of my roots is from Alma’s country (Cherokee Nation) in Oklahoma. I try to stick with a little more tame water.

Hey barkeep … how about something that’ll warm my numb toes???

Hey Alma, thanks for the carol … and welcome to the “Dark Side” of the river.

Gary

Getting Christmas decorations out of the attic. I missed my step somehow and missed the rafter (foot went right through the sheet rock. Good thing the kids were home and could help me pull my foot out. 😮

My knee was huge the next morning.

Merry Christmas and God’s richest blessings for you all and your families.

Gary