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Charcot Marie Tooth Disease

Posted , 3 users are following.

mark357
mark357

Is there anyone that has CMT (Charcot Marie Tooth Disease) as I have a question for you.

0 likes, 5 replies

5 Replies

  • mark357
    mark357

    Posted

    My question is from the point of diagnosis, how soon is the memory affected? The reason why I ask is because I am forgetting the simplest of things and I am getting frustrated and annoyed...😪
  • tneitap
    tneitap mark357

    Posted

    Hi Mark,

    I have CMT1A (genetic test confirmation). Memory is not affected by Charcot Marie Tooth disease. CMT is a peripheral neuropathy meaning is does not affect brain or spinal cord. I had symptom onset shortly after birth and was diagnosed at age 11 (more than 40 years ago). Please see Wikipedia: https://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease for more info.

    • mark357
      mark357 tneitap

      Posted

      Thxs for your reply, I can confirm that I have been told that I have CMT3 I am getting my next operation on the 9th Dec, I have already been diagnosed with scoliosis. But was thinking if your nerve's are affected then what about your memory. I have been told by friends that I forget things easily. I must admit that I have to try listen to a conversation but lose track fairly quickly. Like something as easy as my age, I have to deduct the year I was born in from the year I am in now as I can never remember. So if it is not CMT, any guesses as to what it might be?
  • tneitap
    tneitap mark357

    Posted

    Wow. CMT3! Dejerine–Sottas disease. That is very rare indeed. It is a demyelinating type (like CMT1 and 4) but is more severe. Scoliosis is definately common in CMT (both side curvature and front to back curvature).

    There are two different nervous systems in the body. One is the central nervous system (CNS) which is basically the brain and spinal cord, and the other is the peripheral nervous system, which is mostly sensory (feeling) and motor (movement) nerves. All CMT subtypes affect the peripheral nevrvous system. Other demyelinating diseases (like multiple sclerosis) can affect the CNS and therefore the brain itself. There's no way I can guess what affects your memory but I know from personal experience that medications and poor sleep can negatively effect my memory. Good sleep is sometimes tough with CMT because our bodies are often quite uncomfortable. We are also prone to sleep apnea and restless leg syndrome which adversely affect sleep quality as well. Lack of sleep has profound effects and many bodily systems - including brain function.

    Sometimes however, it is not memory (ie. storage) that is the problem but recall that is the problem. If I meet someone new, I cannot remember their name. Actually, I cannot recall their name. I can remember it but can olnly recall it usually when I'm in a different situation (and it doesn't matter any more).

    • mark357
      mark357 tneitap

      Posted

      Everything you have said, I agree with 100% especially with poor sleep as I can't remember the last time I had a good night sleep. Even in a deep sleep I am woken over the slightest bit of noise. But I thought that I would through it out there regarding the memory, to see if anyone else has had this problem...it is that bad I put my appointments in a diary and a pocket diary and in my phone as I will forget about them inside a day. I even have a daily reminder on my phone regarding the internet. The only thing that I remember easily is my medication as I have been on it for over 15 years.
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