Hi ConnorZmom…

I have not been here in awhile either, but I remember your name… Sorry for the misdiagnosis, but I hope it may help your family… And I will be praying for Candi…

My goodness, what an extraordinary burden your family is carrying. I’m sure we can all pray for all of you and especially your sister.

hi stacey, i will pray for your family. nice to see you again, i sent you a pm

Hi Stacey – It’s so odd that you posted. I was thinking about Connor the other night & wondering how he was doing. And thanks for asking about Emily…she’s doing really well. She’s starting roller skating classes & seems to have found her niche in life. She’s learning tricks (jumps) and continues to amaze me every day.

I’m very sorry to hear about your sister. I will be sure to pray for her.

Kelly

hi stacey, i will most definately keep your sister in my prayers, she is lucky to have you for a sister. i remember when you found out about your CMT dx. i asked my neuro the next time i saw him if i had ever been tested for CMT because of my hammertoes and high arches? he laughed and said, you don”t have that, you’d be in a wheelchair!!! thanks stacey…got rid of him partly cause of you…have just learned so much from ya’ll. your sister’s heart is in my prayers.

judy

Kevie loves his bb guns too, during infussions, him and the nurse go outside and shoot at targets. Air soft guns are pretty fun too!! Glad to hear Connor is having fun!! Also about the gym thing, from experience (ours was a great experience, but some friends with issues was not) you can talk to the school nurse, principal, socail worker etc. about setting up a 504 plan, it is not like an iep where he would be put in remedial classes, it is just a special program set up for him for accomadations. It is kind of good to start early so you can build a file and show a pattern ON PAPER, because in middle school, gym gets harder, as well in H.S. it is a serious grade. We have had the 504 for gym since 4th grade when this started and it has been great, when he is up to gym he does it, when not, he goes to the resource room and works on homework. I am hoping next year for h.s. to either be excused or if they will let us, do a pass fail grade so that he can still participate when he can, but not have it held against him. We shall see! The chronic absenteeism , 82 days last year, could be a problem in hs. currently we get an at home tutor for one hour for each day we miss. I am praying to God the years of documentation will help us in hs!!

if you still want that # of that awesome lady I told you about, let me know

Yeah, I am still here, just not quite as often. I check in and try to keep my mouth shut.

I was wondering how you were doing and how things are. You know I was mis diagnosed as CMT first, and then CIDP second. The two diseases are quite similar in presentation. I have the high arches. But the other stuff didn’t fit. genetically I didn’t match, and then we tried the CIDP path and, well here I am.

Make a long story short, that is why I was so hesitant when you were going through your change in diagnosis. I was afraid you were getting pushed into something that it might not be.

But, I am glad you have a diagnosis that you have faith and comfort in. That makes a difference. You can begin to deal with it, no matter what it is, you can start to get your arms around it.

I still have the same e-mail addy and if you EVER want to or need to e-mail me please do. OK?

Dick

Brenda,

If your willing to travel the 4 hours to here I can get you in with my Neuro at U of Michigan. I highly recommend him and just saw him yesterday. Let me know if you want the information and I will email it to you. Also they just opened a Neuropathy Association sanctioned Neuropathy Center at U of M. Take care of yourself, I am sorry to hear that you have been relapsing, your in my prayers.

Jerimy

I’ve only had one relapse since I was diagnosed 7/15/04. It never got past my knee’s(thank God) but was bad enough. It set me back about 2-3 months in rehab. I’ve never heard of Avonex. I wonder if that will help. Good luck.

brenda,

i suspect these are genuine gbs attacks, not setbacks from over doing it. a ncv at time of attack can confirm this. you then need ivig. you prolly have cidp or, hopefully, recurring gbs. take care. be well.

gene gbs 8-99
in numbers there is strength

hi brenda, nice to see you back. i am in a similar situation as you, i have had 4 paralysis events since last aug. my most recent one was worse then the others and was in may. i am still officially undx’ed but they aren’t giving up on the gbs dx. i am also having problems with the drs doing any treatments other then ivig last oct- can’t have those anymore had a bad reaction. i am also still hearing it is in my mind from a psych dr who saw me last aug and in may. he thinks i should go to cleveland clinic and go through their psychotherapy pain management treatment program. like i would go thru that for pain that has nothing to do with the reasoning behind these events, my pain is well controlled with 2100mg of neurontin. pain isn’t my problem, its the drs who don’t listen to me and don’t treat me like i have a problem that is the problem. i will ask my neuro if they would think avonex would help or harm. i was having these events every 66 days except it skipped the feb/march one. i have told my husband that i am getting those same feelings back that are my signals to my events again, so i am taking it abit slower nowadays and resting more. take care.:)

Welcome back to the family Jennifer.:) 🙂

hello QD [jennifer] & welcome back. take care. be well.

gene gbs 8-99
in numbers there is strength

Welcome back Jennifer it’s nice to see you again.

Jerimy