It’s been a long time

    • Anonymous
      March 23, 2011 at 10:36 am

      I havent checked these boards in so long ! I see so many new names…I’m sorry to see more victims but happy, at least, you’ve found this forum.

      I was mis diagonosed for four years with CIDP only to learn what I really had was Charcot Marie Tooth. Since I’ve been gone, my son is diagnosed, my sister, my cousin, and my uncle.

      I dont have the typical high arch so I guess my Dr didnt know. I dunno…I’ve been to a few Drs with all of this, that’s for sure.

      I am here to ask for prayers. My sister is sick with stage four lung cancer, inoperable and spread to her bones. She is 55 and never smoked. Her name is Candi.
      I’m hoping some of you can help me pray for her.

      I hope all is well…Dick, are you still here ?

      thanks all and well wishes to everyone,

    • Anonymous
      March 23, 2011 at 10:43 am

      I am also curious how little Kevie and Emily are doing ? All the kids here ?

      I’ve been gone too long !

    • Anonymous
      March 23, 2011 at 2:13 pm

      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…

    • Anonymous
      March 23, 2011 at 2:29 pm

      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.

    • March 23, 2011 at 3:58 pm

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

    • Anonymous
      March 23, 2011 at 4:22 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.


    • Anonymous
      March 23, 2011 at 8:58 pm

      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.


    • Anonymous
      March 24, 2011 at 8:37 am

      Judy, do you have CMT ? I think they are both so similiar…yet different. CMT has no cure…it’s genetic and there are many types. I have stayed basically the same for a while. I have a cane that i have to use and AFO’s that are really cool ones but cant quite find the right shoes for them.
      I struggle the most with fatigue but still working full time. I’m sure that plays a big part.

      Emily is roller skating ! That is awesome!!! Mom must be so proud and relieved !!!! I am so glad to hear that !

      Connor is doing ok. He was fitted for night braces that he wears not as often as he should. I learned which battles to fight and which not to. If he doesnt wear them, I try to have him wear them while he’s watching a movie…any amount of stretching will help. His heel cords are very tight. He also has shoe inserts but has just grown out of them so we’re going to get fit for bigger ones. We are going to try a chiropractor to help stretch.

      He’s doing top notch in school and I’m in communication with his teacher and PE teacher regarding his diagnosis. So far, he is doing great in gym…not the best, he has a hard time with running. He can run but not fast. And playing soccer is his enemy. He’s played basketball and did really good and now we are waiting to start baseball practice. The boy has quite the arm !

      It was the hardest thing to talk to the teacher but I knew I had to and now I’m so glad I did. Like any Mom, I worry about his future…and how he will do as he gets older. I have huge guilt. I’ve cried many tears and still do. But, finally, I have learned to take one day at a time and try not to stress too much about the future. I cant change it. But, it does break my heart.

      Dawn, I read your PM…I will write back to you soon…your family is in my prayers.

      It’s good to see familiar folks…very grateful for the prayers. She found out they cannot do surgery and I dont know if she’ll do more chemo. It’s a very scarey and sad time in our family . It doesnt seem fair…we lost our Mom three years ago and now my sister ?
      She lives about 4 hours away and I’ve been going to see her on the weekends. She lives in the country and Connor loves to go there b/c he gets to ride the 4 wheeler and shoot bbgun (at a target) and it’s just nice to be there. She is very good to him. Her granddaughter is my great neice and she is one year younger than Connor and they go with us, too. The kids play great together and Candi is very close to her grand daugthers. Two of them..age 7 and 4. It breaks my heart that this has happened to her.

      Hubby got a staph infection from a knee scope procedure and spent 22 days inpatient and had five surgeries in four weeks. One year later he finally got the knee replaced. He’s doing well this time and we are planning to finally take our trip back to Florida so that he can drive a car at Daytona. That trip has been postponed as much as allowed and if we dont take it, we lose all the money on the airfare. I’ve paid to extend them and now they will expire so we plan to go in June.

      His Mom is on hospice…87 with alzheimers. I just hope our family stays well and we get this trip out of the way.

      Thank you for your prayers…I appreciate it more than you know.


    • March 24, 2011 at 11:56 pm

      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

    • Anonymous
      March 26, 2011 at 5:00 pm

      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?


    • Anonymous
      March 29, 2011 at 9:15 am

      Dick, could you send me your email address again ?

      My sister cant have surgery. B/c it has spread to the bone, they arent going to risk it. She is to have 3 months of chemo this time. Last time it wasnt so bad, 8 treatments. This time will be more aggressive.

      thanks for all the prayers. I hope today finds everyone well.


It’s been a long time….

    • Anonymous
      July 11, 2006 at 10:48 am

      Hi all,

      It has been about 9 months since I was on the site. I was posting under da_jeepster.

      I know there are lots of you out there that have had relapses. I just had my 4th in a year and half. This one was soooo different. I would like input anyone has to give.

      The first dx was Dec. 2004. I rcvd the IVIG, PT and did well. 4 months later, same thing again. about 4 months after that it happened again. The doctor asked me to try weekly Avonex injections. They are used for MS, but the doc has used them for other things before with success. This time I went 9 months before a relapse!

      Has anyone tried Avonex?

      Do the relapses generally get worse each time?

      This time it happened extremely fast. Went from numb feet to being vented within 1 hour. I was in ICU vented for 11 days. I wonder if each relapse gets worse or if holding it off for so long just made it worse.

      Also I am looking for a specialist. I live in PA. I was thinking about John Hopkins but thought I would get some recommendations from everyone here.


    • Anonymous
      July 11, 2006 at 2:35 pm


      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.


    • Anonymous
      July 12, 2006 at 10:03 pm

      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.

    • Anonymous
      July 12, 2006 at 10:09 pm


      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

    • Anonymous
      July 13, 2006 at 1:17 am

      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.:)

    • Anonymous
      July 13, 2006 at 9:09 am

      Thanks for all the replies.

      Yes, these are genuine GBS attacks with each one getting worse. I receive IVIG each time. The last one was the first time I was vented.

      I have already told my husband that if this is going to be the course (every couple of months and worse each time) that I want an advanced directive or living will. He, of course, is having a difficult time with this decision.

      I am from a small enough area that the neuro does not believe there is a difference between GBS, it’s subcatagories, and CIDP. He says it is all the same. Obviously I need to go to a large hospital and see specialist.

      I have been to a few large teaching hospitals but they tell me what I dont have. If the neuro specializes in MS, he says I don’t have MS, and that is all he is concerned about. I need to find a doctor who deals with GBS. Jerimy, thanks for the offer. 4 hours is a long drive, although it would take that long to get to John Hopkins. I would like to find someone a little closer to Pennsylvania if possible.

It’s been a long time…

    • Anonymous
      June 19, 2006 at 9:05 am


      I just wanted to say, “hello” to everyone. It’s been a very long time since I have been here. This past year has taken a toll on me. But, I’m back.
      I can’t believe how time flies. I am almost 13 years diagnosed with GBS! (June 29, 1993) Wow!
      I still have pain, aches, tingling, numbness, etc.. :rolleyes:
      But Thank God I’m still here!

      I have miss you all so much!
      It’s good to be back. I promise to keep in touch!


    • Anonymous
      June 19, 2006 at 11:26 am

      Welcome back to the family Jennifer.:) 🙂

    • Anonymous
      June 19, 2006 at 11:51 am

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

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 19, 2006 at 2:28 pm

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