Waiting is making me nuts

    • Anonymous
      March 12, 2010 at 9:14 am

      I called my Dr again yesterday bc my sister doesnt have her genetic test results back yet. She is being tested for CMT. At least, I havent been told anything. She hasnt replied to my emails….I havent talked to her and doubt that I will. The info from my neice is second hand and I hate that. My sister dis owned me after my Mom’s passing b/c of the Estate. She wanted things done much faster. Then, I sold my house and didnt use her daughter as the agent b/c I didnt ever want to do business with family…so b/c of that , she swore her daughter would never speak to me again. Well, her daughter and I are very close. My sister said horrible things to me, about me, etc…we stopped speaking over a year ago. I’d forgive her…but, she wont forgive me. Maybe b/c I dont know what I did wrong. I had good reason for listing my house with someone else and it sold in a record 9 days.

      My Dr told me that we would do a test on me as well UNLESS we find hers to be negative. And also do a test if she doesnt give me exact info that we’ll need. He said he didnt think I’d have both CIDP and CMt.. just CMT.

      I’m beginning to get really scared…not just scared. I’m thinking that had we done this 3 and 1/2 yrs ago, I could have done something THEN for my son rather than let all this time pass and let his heel cords get tighter.

      I always wanted to be a Mom…and I am so lucky to be blessed with my little boy …but I just cant stand to think he may suffer the way I have. He wants to be a baseball player when he grows up. He doesnt run very fast and is always last in the relays at school or basketball. I feel so bad. Words cant describe.

      I just dont understand how much “strength” God wants me to have sometimes. I’m at breaking point.


    • Anonymous
      March 12, 2010 at 9:26 am

      Tie the knot and hold on tight!!! Will be thinking of you today. Hope it’s pretty there go outside and get a bit of fresh air!

    • Anonymous
      March 12, 2010 at 9:50 am

      Hang in there Stacey. I hope you find something out soon.

    • March 12, 2010 at 12:11 pm

      Hi Stacey,
      Even if you had pushed the doc when we initially talked about it in the begining, its not like you could have done anything differently for Connor besides maybe inserts (that is even assuming he has it.) Did you check out the sketchers at Nordstroms and Macy’s for yourself? (I mentioned them a couple of posts ago,) they help build calf muscles and others. They come in black, maybe you could get them small enough for Connor too, not sure if they are available for kids. Did you get orthodics for Connor? Maybe you could go to a MD doc if you did not like the ortho you went to for Connor, then you could be sure you are being pro active for Connor.

      My gut says you have cidp and never got enough ivig at the onset because of your reaction to it. If the test for your sister or yourself if youo get it comes back no cmt, you HAVE TO TAKE CHARGE of your health. Either demand this doc do something or get new doc.

      About cmt, with all of these new variants, I wonder if because cidp and cmt present so similarly in ncv/emg and clinical presentation if some of those w/progressive cidp actually have some variant of the two? This would explain why they have no result w/ivig. I still think as I have for three years that this doc just never gave you loads, or even steroids etc. Good luck, keep us posted.

    • March 12, 2010 at 5:25 pm

      Hi Stacey,

      Since you sister is unwilling to communicate and unless you can acutally see her tests I would not rely on that information to see what’s going on.
      I would want to do my own test with my own doctor and take it from there.
      The next thing would be to determine if your genes could affect Kevie.
      The hereditary effects from females and males are quite complicated in CMT and hard to understand.
      There is a Forum [url]www.Charcotmarietooth.org[/url] that you could go to and get more information about you and Kevie.
      Also if you have CIDP and are not being treated maybe that a problem. I just don’t know. Can you get a second opinion about you problems as well as Kevie’s?
      Only you can decide what to do. I know healthcare affordability could be a problem and time also since you’re a Mom and Caregiver and needing support and help for your CIDP. I am going to pray and ask for a big basketful of help and blessings for you. Maybe for now the CMT Forum might be a good place for you to visit.
      Someone on this Forum might come along with a miracle for you and Kevie.
      I hope so!
      So many good people here are informing you and supporting you and your life has to get better.

    • March 12, 2010 at 9:32 pm

      Hi KatyK,
      I think you mean Connor, not Kevie, any chance you could change it, I just feel weird, like a jinx? 🙂

    • March 12, 2010 at 9:51 pm

      :confused: Oh My I apologize from the bottom of my heart, Dawn.
      There will be no jinx only fervent prayers for two little boys and I am certain they will both recover.

    • March 12, 2010 at 9:55 pm

      :confused: I just realized I need to send an apology to Stacey also for mixing up names. Please forgive me.

    • March 12, 2010 at 9:56 pm

      I am going to look at it as you are frequently thinking of Kevie!! We woul love the prayers!:)

    • Anonymous
      March 13, 2010 at 1:34 am

      thanks Katy, you are sweet…it’s ok that you mixed up the names…
      I think they are both awesome boys, regardless.

      appreciate the prayers and thoughts..


    • Anonymous
      March 13, 2010 at 12:03 pm

      Genetics are a wierd thing. I have severe scoliosis – corrected by 4 surgeries begining in 1970 – and have lived a full and successful life. Very few people are even aware. The scoliosis caused heart implications until my back was fairly well straightened. Restrictive asthma, caused by my lungs being compressed by an S curve spine has been a significant part of my life for 40 years. Daddy had scoliosis, too, we discovered in his later years. When the autopsy showed Grandpa had scoliosis we were not surprised, as his sister had a “bad back”, and so did his mother. So, scoliosis was easily traced from my Great grandmother to me.

      My husband and I spent many hours trying to decide if we would have children or not – but then my youngest sister was also diagnosed with scoliosis and a small, simple brace corrected her problem. She was in the brace 4 years and had great results. We decided to have children, because the medical community was making great strides in the area. My oldest son does not have scoliosis, my youngest son does. The Navy would not take him and it broke his heart – but one cannot imagine the pain it gave me (and still does). Both boys have become Daddys this year to wonderful little girls – and of course we all hold our breath to see if the problem will continue another generation. We won’t know until they are teenagers – but we will watch carefully and catch it early.

      Daddy was also diagnosed with CMT and carried that diagnosis for about 10 years until a highly skilled neuro reversed it, based on tests. All of us girls were also tested with negative results. He was then diagnosed as Ideopathic Periphial Polyneuroapathy – they didn’t have a clue where it came from or how to treat it. We lost him 4 years ago after he became bdridden for a year.

      During that time he and I had a talk. He apologized for all the awful genetic conditions he had passed along to me. I told him I had a wonderful life, and I was glad he and Mother did not have the capibility to choose whether to have me or not. I considered my life a blessing.

      Yup, I have a number of genetic problems – and my oldest sister struggles with Lupus – another autoimmune disorder. Genetic conditions are a fact of life. The more often Euro Americans marry other Euro Americans the greater the chance for genetic conditions to be expressed becomes. One of my sisters married a Japaneese Hawiian and changed her children’s gene pool considerably. They don’t seem to have any of the family’s genetic problems!

      We are who we are. We should not feel responsible for passing on genetic traits. We are proud of the pretty blue eyes, or the amazing IQ, or the ability to run fast and hit a ball well. We take the good with the bad.

      I am so sorry this has been such a long post. I have just lived my 58 years as a genetic “dump” – and now the fact that GBS is autoimmune my oldest sister and I have decided to keep from my mother, who seems to be the autoimmune link in our family. She feels responsible for the Lupus, although there is no reason she should. I do not blame my parents for the genes they gave me. I hope my children feel the same – they must as they have decided to have children, too. The key is to know and to understand, not to feel guilty.

      I shall pray for you and your son – so that however the tests turn out you will have the strength to go on. Love is far a far more important gift to give your children than genes. They happen, out of your control – the love happens because you are a wonderful mother. Of that, I have no question. Just keep on being who you are, understand the genetic problems, but don’t feel guilty about them.

      My best –


    • Anonymous
      March 13, 2010 at 7:53 pm


      Hopefully your sister will will get over her mad someday.
      Wishing you good luck on those test results.

      Hugs and prayers


    • Anonymous
      March 13, 2010 at 8:31 pm


      Thank you so much for that post. It leaves me thinking with tears in my eyes. I will forever be sorry for giving him such fate, if in fact, I do…I know that I cannot dwell on guilt but it will be hard to swallow. I’ll never regret having him and he’ll never be loved by anyone more than I. And, I’ll pray he’s a stronger man someday b/c of it.

      Thank you for helping me keep this in perspective.


    • Anonymous
      March 13, 2010 at 8:33 pm

      Shirley, thank you for the prayers. I dont think she’ll ever get over her mad. She’s done alot of damage that she can probably never un-do. I took the first step in emailing her with nothing in return. I just hope she’s not so caloused that she would jeopordize the health of my child.


    • Anonymous
      March 14, 2010 at 3:11 am


      The genetic test should be back in 21 days. I remember my doc telling me specifically. He had to send it off to have it done, and he said 21 days.

      By the way, why doesn’t he just test you anyway? I am sure he could justify the test insurance wise. Insurance would gladly pay for CMT treatment $$ instead of IVIG. That would put all of this speculation to rest.

      Just a thought.

      Dick s