Me, my sister and CMT

    • Anonymous
      February 22, 2010 at 8:28 pm

      I talked to my Dr after learning my sister is being tested for CIDP/ CMT. She told me neice that the Dr didnt believe she has CIDP b/c I do so they did this blood test that will take three weeks to get back. Sounds like it’s the genetic test.

      My Dr told me he didnt do that test on me b/c you never get good results. He told me that if she has CMT that I need to know the specifics. Basically, I think he’s thinking we both have it..he told me if she does, I do. He said he never tested me for it b/c all of my tests indicate CIDP.

      this would explain why the millions of dollars spent on ivig never worked for me.

      He also said, you always get worse over a long period of time, yeah, just like I did.

      He said it manifests typically in your children at the same age as the parent, should they get it, too. 50/50.

      I didnt need to hear this today. What is CMT ???? And how much do you wanna bet…I DONT have cIdp ? I’m just sick.
      I have three weeks to wait and hope my sister tells me everything. We havent spoke since my Mom died.
      I would never wish this on her…cant believe this. Just cant !
      I had a sink full of dishes, a husband laid up after five surgeries and a staff infection, and earful of bad news and my son wanted to go outside and sled. I worked today and was already pooped but decided I am not going to waste another minute. We sled and boy was it fun !

      here we go again.

    • February 22, 2010 at 9:50 pm

      There is a forum for cmt. If you want I can try and find the # of this really nice lady that helped me in the begining. Her name is Elizabeth Alloette and she could answer questions. I am almost positive there is no elevated protein with cmt. Didn’t ivig help in the begining, when you were having the reactions, hence cutting back? Contact your local muscular dystrophy chapter and they will help you. As a matter of fact, some states include cidp in their musc. dystrophy chapters. (michigan does, ill does not) Write later to keep us updated. I am goping to see if I can find out about the protein, will let you know.

    • Anonymous
      February 23, 2010 at 9:27 am


      You have my thoughts and prayers as you move forward through this. It has to be incredibly frustrating.

      I’m going to ask a stupid question, for the benefit of myself and possibly other “newbies”…by “CMT”, are you referring to “Charcot-Marie-Tooth Syndrome”? Just want to be sure, as I don’t see it specifically named in your posts, only referred to as “CMT”.



    • Anonymous
      February 23, 2010 at 10:37 am


      Way to go with the sledding, glad you had fun.

      How is your husband doing now?

      Hope things get better soon.

    • Anonymous
      February 23, 2010 at 10:40 am

      Elmo, when I was being tested for CMT, my husband said it was Country Music Television and that I needed to buy a fiddle and boots.

      Through all the testing, Charcot-Marie-Tooth wasn’t completely ruled out: there’s a 30% chance that I have it, and my neuro still has it in the back of her mind that I may have both CMT and CIDP.

      Stacey, I’m glad you enjoyed the sledding. It’s always great to get away from the normal world and just have fun being a kid again. Never grow up.


    • Anonymous
      February 23, 2010 at 12:54 pm


      That’s funny! My first thought when I saw the thread title was that it sounded like the title of a bad country/western song! 🙂


    • Anonymous
      February 23, 2010 at 7:08 pm


      My daughter is being put into the category of CMT also. It has been back and forth between CMT and CIDP. They said that she could have CMT with CIDP on top of it. Her symptoms are very much like yours. Her tests came back negative. She had elevated protein. I have been told by all the experts that you can have an elevated protein with CMT. There are so many types of CMT and they are identifying more all the time. If my daughter has CMT, then it is from a mutation. I believe you can have flat feet or high arches. The only thing IVIG did for my daughter was to help with fatigue, which they say it can do. The thing about CMT is depending on the type, you can progress to a point and then stop and not progress any more. We saw Dr. Shy at Wayne State University in Detroit last March and will be seeing him again next month. He is the CMT expert in the United States. He wants to see her yearly to track any changes. It may be worth it for you to take a trip to Detroit to see him. He schedules full day appointments and you meet with many different specialists during the day. He sees patients from all over the world. They accept insurance, but if your insurance does not cover him, they do not charge you. CMT is not always a horrible diagnosis. No two people are ever alike in there symptoms. If you go into the Charcot Marie Tooth Association website they have a forum with some really nice, helpful people. There is a Cathy on the forum who is I believe in her 50’s. She sounds a lot like you also. She wears AFO’s, but leads a very normal, full life.

      It would be nice if my daughter could find out for sure if she has CIDP or CMT. I don’t think we will ever know.

    • February 23, 2010 at 7:32 pm

      Thanks so much for all of that info. I was not able to find any info for Stacy on the elevated spinal protein, I am so happy you were able to clarify. How do they tell the difference? The ncv/emg presents the same way, now protein, it seems like the ivig and if it works or not is the only difference. Both can have dropped foot, both can have hammertoes??!!I think I remember there were CM1, CM2 and on and on. I wish God could give us a break and just make each of these illness’s a little more individualized. Have you come in contact with Elizabeth Allouette? She was so kind to me. I was a scared confused mom and she helped me so much!!

      BTW Stacey, since this doc is in Michigan, Michigan does cover tests, bills etc. under muscular dystrophy, but I do not know if you have to be a resident or just the doc has to be in Mich. I myself, was wondering how insurance works if you go out of state if we should go somewhere else, such as Mayo if need be.

    • Anonymous
      February 23, 2010 at 7:47 pm

      thanks for the info. I have been busy with my husband and havent researched much. I am very scared..not for myself, but for Connor.

      I will just have to wait. And, hope that my sister gives me the info and that the info is good news. It seems like CIDP is the lesser of the two evils.

      thanks again…and please keep posting..I will be checking as often as I can and promise to update.


    • Anonymous
      February 23, 2010 at 7:56 pm

      I went and saw a Neurologist today. One of the best in Canada because my Neurologist is on Maternity leave. Well he doesn’t think I have CIDP. He wanted to know if I ever saw a Rheumatologist and I said yes 2 of them and he said did they ever check you for Lupus or something. I said they did.

      I go back to see him in 1 months time. Right now it’s the swelling and muscle pain and stiffness that bother me. I was trying to get myself to work 8 hours but since I had this relapse which started about 4 months ago. I am having a harder time to work. My thighs get sore sometimes stabbing pains and stiffness and sore muscle in my arms chest and finger and my back. I am taking Flexril for my muscle but it’s not enough and I had tried Baclofen which helped some but not enough. I requested a stool at work so I can sit down occasionally because my thighs hurt so much might take a while before I know if they will buy me one.
      I first got sick in 2004 after the flu shot and it affected both sides. But my Spinal Tap was normal and my Nerve Biopsy was normal.

      Why would I have lots of the CIDP symptoms in 2004 and my Neurologist in 2005 said I had CIDP now DR Bourque doesn’t think I have it. So he is not ordering any treatment for me as he doesn’t feel it’s CIDP. He is the head of the Neurology Department.

      Sorry for hijacking this thread just thought if anybody might have ideas. Was told I have CIDP now they are saying I don’t.


    • Anonymous
      February 23, 2010 at 8:15 pm

      There are so many types of CMT. The worst CMT types are the ones that are diagnosed when you are a baby. The other types are really not that horrible. The weakness is usually from the knees to the feet and the elbows to the hands. Because CIDP and CMT are so much alike, that is why it is really hard to determine between the two. The only real way to know for sure is if it is CIDP and you get a good amount of change when on treatment. Otherwise you are kind of stuck like we are. My daughter has not really changed at all in the last three years, but she never got better. That is why they are leaning towards the CMT. They said it is possible that where she is now is the worst she will get. That is why we really want to continue to see Dr. Shy. He sees thousands of patients from all over the world and he knows what to look for.

    • February 23, 2010 at 8:30 pm

      It has been a while, I don’t remember all of your info, but I think you DID have good results with prednisone, ivig too? If you were thinking cmt, we now know the ivig does not help and I know steroids do not help with ivig. Also, there is a variant of cidp that does affect the ears, didn’t you have problems with your ears? Maybe you could ask for another ncv/emg as a comparison to the last ones?

    • Anonymous
      February 23, 2010 at 8:41 pm

      Hi I had result with Prednisone. I first had IVIG for 5 days in 2007 then was put on Prednisone for 2 weeks for my sudden hearing lost. Then I went into remission. In 2008 I had 5 more days of IVIG with no changes.
      Last year I was put on Prednisone which helped me but made me a diabetic so I got weened off it then the relapse happen again in late October 3 weeks after lowering the dose of the Prednisone and I am still in a relapse.
      I feel that It was the combination of the IVIG and the Prednisone that helped me in 2007.

      BTW I always had some hearing lost before the CIDP but it gets worse when I am in a relapse then gets a bit better when get into remission.
      So If I don’t have CIDP do I have a variant of some other disease similar to CIDP?

      Thanks for everything


    • February 23, 2010 at 9:14 pm

      Hi Sue,
      It is a cidp variant for the ears. It sounds like cidp since you do respond to treatment. Do they not want to do ivig? How about pp? About the ivig if you are diabetic, certain ivig’s do have sugars in them, so inquire. You have not really been on any treatment for a while so it could be a relapse.

    • Anonymous
      February 23, 2010 at 9:29 pm

      The DR said that looking at the result of my nerve testing that it’s not CIDP but that something is going on. Also the DR who did my nerve biopsy in 2005 thought it wasn’t CIDP because the nerve wasn’t damage.
      But I wonder why is it that I went into remission for 18 months and the improvement stopped in 2007 after the 2 weeks of Prednisone?
      But last year I was on Prednisone of more then 20 mg for about for about 2 months then when they lowered my dose I didn’t go into remission but to another relapse.

      I was off work last year for about 5 months then went back to work part time hours because of the people at work who think I am a hypochondriac and who made my life a living hell since 2004. The stress of being sick with an autoimmune disease and people look at me like what is wrong with her she looks normal. In the past people were very vocal in there assessment what they thinks is my problem.
      Now I am trying to work full time but the pain and stiffness and weakness is affecting me.

      Thanks Again


    • Anonymous
      February 23, 2010 at 11:07 pm

      Hi Stacey
      My thoughts and prayers have been coming your way for a while now. I hope your hubby is getting better. I hope you figure out a correct dx for you and that your sister finds out a dx too.
      did you ever find out what was going on with your son, I rememver a while ago you had posted that he was haivng some issues. could CMT be a possibility? I hope not.
      I have heard of more than one person in a family having CIDP so let your sister know that the docs shouldn’t rule out CIDP just because you have it. But I can understand why they are leaning toward CMT. that would difinitely be a reason for your neuro to test you and possibly your son too.
      I will pray for a correct dx, Hang in there I know things haven’t been easy for you.

    • Anonymous
      February 24, 2010 at 7:26 am

      Hi Stacey,
      I just wanted to make another attempt at letting you know I am sorry for your recent struggles. I have been checking in and reading up but could not respond in any way because your box is full and for some reason this site is not recognizing me. I tried posting two days ago but it never got posted. I don’t want you to think I am ignoring you or don’t care. I think of you so often as your disease process is so similar to mine and you have been such a good support to me. I always wish I lived near you so I could help in some way. It has to be such a stressful time with your husband and now this wrench in the “what is this disease I have” game. I am pulling for you to get clear answers and relief. Just know I am here.
      all my best,

    • Anonymous
      February 24, 2010 at 2:48 pm

      thanks Rhomcc…
      Connor was evaluated by an ortho Dr and told he has tight heel cords and is a toe walker. I took him to a child neuro and was told there was nothing neurologically wrong and that, yes, he walks on his toes. Still does. We did PT but they did all they could and sent us on our way. I’ve put that aside and am now once again very concerned. I’ve made sure to buy him proper tennis shoes with good support and he doesnt fall nearly like he did…but still, up on the those toes. We stretch but I think he could use the night braces …something.

      My husband is doing better. He’s had five knee surgeries in four weeks b/c after a simple scope he got a staff infection. It was a true fight. He is still home and on crutches with a PICC line for antibiotics and slowly getting better…we have had four good days in a row.

      All of this CMT or CIDP…we’ll see I guess. I hope she has neither and hope I have CIDP. Like I told my husband last night..I dont care what happens to me…and I really dont…but when it comes to my son…well, that’s a whole different ball game. I, like any parent, want a whole lot more for him that I’ve ever had…including a decent pair of feet.

      thank you all for your support and prayers thru everything I’ve been thru…and yeah, we are in a rough patch…but I have faith that things will turn around. How could they not. Linda, I’m glad to see you again !

      Fighting all the way,

    • Anonymous
      February 24, 2010 at 11:00 pm

      I found a few things that are listed to make it more likely to be CMT compared to CIDP. It seems none of these are absolute, but they tend to indicate that it is one or the other.

      With CMT,
      Usually the symptoms start when someone is young; usually a person is clumbsy from childhood.
      Usually the symptoms slowly get worse.
      Usually there are losses of muscles at the foot or hand end of the limbs–usually foot earlier than hand.
      Usually there are foot deformities and/or foot drop.
      Usually the motor nerve conduction velocities are uniformly slowed (whereas in CIDP, the motor nerve conduction velocities are variable in different nerves/parts of the body in a manner described as patchy and assymmetric.

      CMT is about 25 times as common as CIDP. CMT is the most common inherited neuropathy and CIDP is considered rare. CMT is found in about 1 person out of 2500 (or 40 people per 100,000) and CIDP is found in about 1.6 people per 100,000. Because CMT is relatively “common”, some people can get unlucky and have both CMT and CIDP.

      They have found about 30 different genes causing CMT and other hereditary neuropathies and it is expected that there may be a total of 50 different genes or so when they find them all. there is great progress being made. There is also progress being made on what may help in CMT and so even if CMT runs in your family (and perhaps also his dad’s family) and Connor was unlucky enough to get the 1 in 2 chance to have also gotten it, there may be ways known to help him a lot more by the time he might have symptoms of it. This is probably the most important thing for you to hold on to–that even if you were to have CMT, it does not mean than Conner would have it and even if he had it, he might not have to face as much problems as you have had to face.

      WithHope for a cure of these diseases

    • Anonymous
      February 25, 2010 at 11:53 am

      do you think my Dr would know that with the EMG’s I’ve had ? explain what you mean by uniformly slowed rather than patchy. I take this to mean more groups are slowed that here and there slowing ?

      thanks WithHope…I’m just scared for my son…and I know there is a 50 percent chance he wouldnt get it…but, still how do I not worry. i’m not dwelling on it by any means…we dont even have the results yet.

      I’m hoping maybe I’m as bad as I’m gonna get. It’s ok to be optimistic. It’s all I’ve got !


    • February 25, 2010 at 8:54 pm

      Hi Stacey,
      With a full plate like yours Iam praying that the heavens pour down all of God’s grace that’s possible.
      I want to share this with you. Today I went to my neuro wearing my Earth sneakers. These Earth shoes are made with the heel lower than the toes.
      Good cushioning, arch support and with the heel 3.5 degres lower than the toes it forces you to walk heel to toe. I was amazed when I first bought these shoes. My balance was better and I was walking heel to toe like my neuro had advised.
      These shoes did take some getting used to, because they are different and they seemed to affect my posture and I could feel my achilles tendons and calves getting a workout.
      I didn’t wear them all the time at first although I liked them, but now they are comfortable and I am walking better and enjoying the treadmill.
      They have kid’s Earth shoes sneakers, athletic shoes and others. I thought of Connor. I don’t know how he would adjust or if he would wear them a couple of hours a day to get used to them.
      There are websites that have kid’s Earth shoes and a clearance site where you might get a good deal. Or you might call around Omaha to see what stores carry these shoes. They seemed affordable, but kids are kids and you will know whether they are right for you boy.
      With best wishes for you and your family.

    • Anonymous
      February 25, 2010 at 9:33 pm

      I meant to say more groups are slowed THAN “here and there” slowing.

      Thanks Katy…I will check out the website for sure.

    • February 25, 2010 at 9:58 pm

      sketchers has these rocking shoes that are for feet issues, you might have to go online, not sure if they are in stores.

    • Anonymous
      February 25, 2010 at 10:31 pm


      Some of the other signs of CMT are extremely high arches. The high arches tend to be inherited, do others in the family have high arches?

      With CMT the tendons in the plantar fascia (the arch under the foot) contract and draw up causing not only great pain, but your foot will draw up as well. This is usually progressive. CMT is genetic and testable. They thought I had it and tested me for it in the very beginning.

      As to which one? CIDP or CMT? Neither one is fun. No cure for either one. With CMT they can do a tendon re-assignment surgery to lengthen tendons etc, but that is only a stop-gap. I stopped researching CMT when my neuro became more convinced I was CIDP not CMT. The test that changed his diagnosis was the LP, spinal fluid test, and the sural nerve biopsy.

      The genetic test came back inconclusive, the LP was slightly elevated, and the biopsy showed demyelination and remyelination in both sensory and muscle nerve tissues. I got the CIDP diagnosis. IVIG didn’t do very much good for me either.

      I would remain skeptical. Why is the Doc so eager to jump ship on his diagnosis? Does he really think he was wrong all this time? I hope he is not just jerking you around to collect some dollars on Lab fees and test charges.

      Don’t be blind to all else.
      Take care
      Dick S

    • Anonymous
      February 26, 2010 at 2:53 am

      What they mean by uniform slowing in CMT is that both sides and nearby nerves are slowed about the same. This is because the problem is one of the nerves themselves. With CIDP, one area may be slower than a nearby area and there can be some differences in the sides of the body in the same nerve. This is because the damage happens outside the nerve–the immune attack on the myelin and what is damaged is a bit patchy because some places there is more damage than other nearby places. At least this is what I understand. I have read enough about GBS/CIDP to feel pretty comfortable about the variability seen there and that it fluctuates some over time, but do not know that much about CMT. What I have read is that the slowing is very much alike in similar areas of the body and it does not vary to get better and worse since the process is slowly progressive and most of CIDP is episodic with periods of badness and periods where peace pervails.

      I should clarify something else. There are some forms of CMT which are autosomal dominant, so that if a parent has it, the child has about a one in two chance of getting it also. There are other forms that are autosomal recessive, in which a person has to inherit a problem gene from both parents so that you and your sister could have gotten CMT but it would be very unlikely that the children of either of you would get CMT and require that the dads would have to also be carriers. If this makes no sense, the important point is that sometimes a parent can have a disease
      (from inheriting an abnormal gene from both of their parents), but the children are at almost no risk of having that illness because to do so would mean that the child’s other parent would also have to carry the same abnormal form of the disease. That is, if you have some forms of CMT, your kids almost certainly cannot get it.

      Its kind of late to make sense, so if this does not I will try again tomorrow.
      WithHope for a cure of these diseases

    • Anonymous
      February 26, 2010 at 10:40 am

      My sister has high arches.ANd, her pinky toes curls over the toe next to it…has for years. I have very flat feet, always have. My son has flat feet, too. We have the typical Fred Flinstone feet. My niece, (my sisters daughter) has extremely flat feet but she’s very, very athletic…a beautiful dancer with no probs. She’s 27.

      My Dr told me it would be very important to find out the gene mutation and something else I have written down, from my sister when her results are in.
      He said if it was a certain one, it would mean I also have CMT. He didnt say if I’d have both…or take out the CIDP and leave me with CMT.
      I told him on the phone that I do have a hammer toe…from the paralysis…and very flat feet. He just told me to wait and see and told me the good news and bad news if it were to be CMT. I didnt think the good news was good.
      I dont know what he’s gonna do if this changes but he wanted me to call him right away. If IVIG ever worked for me, it helped with fatigue and may have kept things “in check”…but, I never got better…take that back, MAYBE in the beginning..b/c there were times I could walk on my tip toes.. That’s long gone.
      I believe I got jerked around and didnt get proper doses of IVIG. I am 3 and 1/2 yrs out from being diagnosed.

      Hard to say.

      I understand WithHope and thank you so much for helping me out.

      I’m still thinking it just cant be. ONe in the family with CIDP is enough…and to start a new trend with CMT ? Just wouldnt be fair. We have very bad genetics in that our family is raging with cancer genes not to mention alzheimers and my mom’s sister died from ALS at age 65.

      have a good weekend everyone…stay strong and chin up.


    • February 26, 2010 at 11:51 am

      Hi Stacey,
      So, for whatever it is worth, which is not much these days, this is what I was thinking. I met w/ aCMT person early on as this was supposed to be our dx. After seeing this man and meeting you , there was no comparison between the both of you regarding physical disability. The flat foot for you and Connor does not fit, but your hammer toes are perplexing as it is a symptom. However MILLIONS of people have hammertoes. There are spontaneous mutations of cmt which means they just appear on the genetics, with no hereditary component. Maybe that is your sisters case. Can you just ask the doc to get it over with and do the Athena on you? I would be cautious about doing it on Connor, for a couple of reasons. Let’s say he has it, if no symptoms are appearing, there is nothing you can do anyway to stop it, and you will always know to watch and get to the doc if you have to. The other reason would be if there is nothing you can do, but watch (besides get night splints or orthodics and have the doc just say tight heel chords or something) why get a pre-existing scarlet letter on his records.

      About you, it has been three years so I may need help in remembering things. I don’t want to upset anyone with my ivig advice so take it with a grain of salt. As you stated you did get a little help in the begining, I just think as do you you never got enough. When you did get the ivig load you had some reactions and then the docs stopped. Did you ever get solumedrol with it as a pre-med? Could you ask the doc to try a couple of loads with solumedrol to see if you see any improvement, because you would not with cmt. Can you ask for another ncv/emg to compare to the others to see if things are worse or if the nerves present as With hope mentioned could you consider the nerve biopsy? As mentioned before if the ivig or combination of ivig solumedrol or pp does not work, maybe you could seriously explore the option of cytoxan or maybe the LDN as erin informed us about. Ask for the Athena test, if it comes back neg., ask for another ncv/emg or a nerve biopsy to if it is JUST cidp and then start treating the cidp. If this doc won’t help you have to find another doc or seriously consider Mayo. You have to get a dx so you can start treatments so you are strong for Connor. I know how hard it is to figure this crap out and know what to do or how to handle it. I am having problems too figuring out what else is wrong with us. (the cidp seems to be ok, we will see in April?) Good luck Stacey, my prayers are with you and your family. good luck

    • Anonymous
      February 26, 2010 at 2:25 pm

      I never got solumedrol and it was never mentioned…and when we get the results of my sisters test, I’m pretty sure I’ll be looking for a new Dr.

      I dont think I’d be able to convince him to do the test since he knows my sister is having it done, or at least we think so. I have yet to hear anything from her personally but my neice was going to see her this weekend and I sent copies of all of my past EMG’s with her in hopes that she’ll get copies of hers and compare. If she will talk to me or not is yet to be determined.

      I agree with not getting a genetic test for Connor. It would only be bad and I’d spend the rest of my life worrying about him.

      If hers comes back neg, that will give me good reason to ask for another EMG but he told me at the last visit there was no need to do one b/c “we already know” . I’m not really sure what he’s doing with me….maybe I’m not an extreme case so I’m boring ? I dunno but I do know…he wont be the one to handle my future if in fact this all changes. And, really, if it doesnt.

      I agree that the CMT dx doesnt quite fit but it sounds as if there are many different symptoms just like CIDP. Who is to say this is something that’s neither ?

      I put my treatments on hold, one to watch and wait. I have been to hell and back with taking care of my husband and think I’m doing unbelievably well. I’m hit fully blown with fatigue but I have no choice other than to push myself. And, I’m ok.

      Second, my ins sky-rocketed..the out of pocket. Making it easier to not do anything.

      Third, January 8th, the nightmare with my husband began-leaving me with NO time for anything for myself. Not even a spot where I could make the time..just not there.

      Right now, I’m doing the best I can and living for the day. If my son wants me to do something , I try my best to do so. I’m trying to get my husband to be a little more independent and with time, that will come, too. We’ll wait to see what my sister’s results are, and go from there. All with a big fat “IF” she tells me. I have to believe she would.

    • Anonymous
      February 26, 2010 at 7:04 pm

      Here is the link to the Charcot Marie Tooth Association’s website regarding CMT symptoms and characteristics.


    • Anonymous
      February 26, 2010 at 8:08 pm

      Thanks Carla. The more I read about CMT, the more it sounds like CIDP in most ways other than CIDP is not hereditary.

      I am trying to put it in the back of my mind…just like I do CIDP. With everything going on, it’s easy to do…until morning when it’s time to get up and I cant move my legs right away or when I take that first step not really knowing if I’m gonna fall on my face or if my legs will actually work. Once I get passed that…I’m good the rest of the day. Tired ? Yes. Exhausted ? Oh, absolutely. But, I’m good and I can forget about it b/c I’m finally used to it.

      I must admit that it’s not on the back of my mind…it’s on the front. I dont talk alot about it, havent told hardly anyone. No sense in stressing over something I dont know for sure. I wont be surprised by anything tho. I am also used to having the worst possible luck.

      Well wishes,

    • Anonymous
      February 27, 2010 at 9:14 pm


      Just because she has CMT it does not mean that you have CMT.

      There is a genetic test that would confirm the mutation at the specific gene site. Her having high arches and having other symptoms that might indicate CMT apply to her, and not to you.

      I guess I am trying to say, be careful. Don’t let the Doc take the easy way out. It would be really easy for your Doc to say “well, since the CIDP treatment has not worked out for you and since your sister has CMT, then therefore, you must have CMT and that is that.” I don’t think “That is that”.

      I mean, you may have CMT, or you may not. I don’t know. Just don’t let your Doc toss you in without confirmation. Everything you have said to me over the years has suggested that your course of CIDP may be similar to mine. Many treatments didn’t work for me. What did finally help me the most was when I finally “slowed down”. When I slowed down, my CIDP plateau’ed and I was able to deal with it. I still have residuals, but it stopped getting worse. Now that I started back working, the CIDP is getting worse as well. I understand the correlation.

      I only wish the best for you and hope that the Doc does his diligence in treating you and doesn’t take the easy way out.

      I’ll be thinking about you


    • Anonymous
      February 28, 2010 at 1:47 am

      I understand what you are saying Dick and I totally agree.
      I think if she has it, he’ll be very quick to throw me onto that bus, too. I wont let him have an easy out…he diagnosed this mess…and I agree, too, that all of my symptoms are along with CIDP. I do have issues with my toes beginning to curl on the first affected foot…very stiffly curling and when it first started , he told me it was from the damage. As things have progressed, so have the toes. I’ll let it be at that for now.

      thank you for thinking of me.

      I’ll be in touch.

    • Anonymous
      February 28, 2010 at 1:49 am

      also, I do believe her Dr has done the genetic test and if so, my dr said there would be no reason for me to do one.
      I was told to ask for spefics.

    • Anonymous
      March 1, 2010 at 1:01 am

      That is what confuses me.

      Just because person A has CMT does not mean person B will have CMT. Genetically you get 1/2 from one parent and 1/2 from the other. Depending on the dominant/recessive patterning, the odds are like 1 in 4. So, just because she does have it, does not mean that you automatically have it as well, or am I missing something? I don’t think it is automatically dominant in the female, although the liklihood of females having it are greater than males.

      Still sounds fishy

    • Anonymous
      March 1, 2010 at 12:44 pm

      My Dr said to ask her what type of gene mutation and sub type when she gets her results. He said if she has it, I have it. I assume he is meaning if this specific gene is positive.

      I guess he’s assuming that we’d both have it. HER Dr was ready to diagnose CIDP until he learned that I have it, too. Now he says it just couldnt be.
      She has numbness in her feet and hands. She had a pedicure and didnt feel anything till they got to her calves. That’s what my niece said. I have not talked to my sister yet…I sent her an email and got no reply.
      My niece said that my sister will wake up with lots of numbness but that it seems to get better as the day goes on. I wish I could talk to her.

      I think we have about a week to wait now…hoping she’ll let me know.

      On this first day of March, the sun is shining in Omaha and the snow is starting to melt ! Cant wait for spring !


    • Anonymous
      March 3, 2010 at 8:09 pm

      Curiosity took me to googling photos of patients with CMT and I found a picture of hands that looked just like my Dad’s. My Dad couldnt straighten his last two fingers on either hand for as long as I can remember. He died at age 58, however, and I was only 20. I didnt know much about anything at that time.

      It’s amazing how much his hands resembled the ones in the photo. I guess if we learn that this IS Cmt, we’ll know where it probably came from.

      He had odd feet but never mentioned numbness that any of us remember. His toes were a bit squished together and we always joked “you got dad’s feet”…Well, I guess maybe I do. The more I look at them…the more I can see.

      Candi, my sister, has the very high arch and curly pinky toes like I mentioned with bulging bunions. Otherwise, her feet dont look that bad. At least they didnt. I havent seen em in a long time. And, even after a few emails, havent heard from her.

      Anyway…just wanted to say that I saw some pictures that makes all of this seem a little closer to reality than not.
      I hope I dont have both.. I pray.I hope I dont have CMT for Connor’s sake…b/c I know the only luck I have, surely isnt the good kind.

      well wishes,