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I think I'm in trouble...can anybody advise?

Posted , 4 users are following.

The_Forester
The_Forester

Hello,

I am nearing 70 years of age and have had CMT all my life. Mostly I have been able to accept the limitations this placed on me and work around them, but a new one has pounced on me that is causing me real, and serious, concern.

I have been to the GP (our practice sadly does not have anyone with any particular knowledge of CMT...or indeed, any knowledge at all it would seem) so I thought I should come straight to the experts...other people who might know what I am talking about.

The problem started in my ankles, they feel swollen when they are not, they then started to feel numb with loss of feeling or sensation, this is moving slowly upwards in the lower leg and also affects the feet.

I now have the starting of the same sensation of numbness in my wrists, lower arms and shoulders.

Can anyone tell me, firstly, are this symptons consistant with CMT, are they "manageable," ie. with medication and how I should proceed to minimise the problems they are starting to cause me.

The GP has referred me to a specialist but says it could take "a long time"...I don't feel happy waiting a long time when this is progressing too quickly for my liking and so could do with some serious advise.

Any comments would be appreciated.

Cheers,

The Forester

0 likes, 9 replies

9 Replies

  • katz31
    katz31 The_Forester

    Posted

    Google othoses they are used in the shoes

    To help strengthen the feet and ankles, also

    There are strengthening exercises which

    Can help. I've not got much knowledge of

    CMT but hope this helps,take care and keep

    On at your doctor for that referral! Thinking

    Of you,

    Kate.

  • katz31
    katz31 The_Forester

    Posted

    Also if you have flat feet there is surgery

    Which can help, keep your feet clean as

    When you have numb feet you could injure

    Them without knowing which can lead to

    Infection.

    • The_Forester
      The_Forester katz31

      Posted

      Hi Katz

      Thanks for that...I try to keep active in the hope that will help ..walking daily and stuff like that...but unknowing injury can be an issue...I can't cut my own toenails because I can't feel what I'm doing...but this recent numbing has got me a bit worried...

  • care4health
    care4health The_Forester

    Posted

    As far as I know there's no cure for CMT. My husband has similar problem, foot drop, cause not known, one possibility is CMT. But he only have symtoms in his foot, not in the arms.

    He wears foot brace and exercise on exercise bike,& does low impact exercises.

    He also uses tens / ems machines, it helps to stimulate the muscles and reduces cramps. Not a miracle machine, but cheap and I'm sure it doesn't hurt.

    Have you been diagnosed 100% with CMT? I read that it's quite hard to diagnose.

    For your waiting list to see a specialist, you should push your GP to keep writing letters that your condition gone worse, make him write something which puts you in a more  urgent category. I did that for my sinus, was on the waiting list in cat.3, basically it would have been a never ending waiting list, till I found a good GP, who wrote a proper letter to the hospital and finally they upgraded me to cat.2. So be pushy.

    I found some article from 2013 about a new treatment. Maybe could be some help.

    http://www.news-medical.net/news/20130429/New-treatment-strategy-for-patients-with-CMT-disease-on-the-horizon.aspx

     

    • The_Forester
      The_Forester care4health

      Posted

      Thank you for that...I read the article with interest...I was also interested in your comments about TENS...that is an avenue I am going to follow, I have used a TENS machine in the past for other issues and always had good results, so I am going to give that a try.

      The problem with the GP is they only have a passing interest in CMT, no real knowledge, so it is hard to get them to understand the problems it causes...but, this is important to me - and to all the other people with this problem - so I will push as hard as I have to.

      Thanks for your comment...and good luck to your husband

  • derek76
    derek76 The_Forester

    Posted

    I just looked at this conversation for the first time and will post about my similar symptoms later in more detail probably in a new conversation. I had a very good and thorough 45 minute consultation with a neurologist this morning after a six month wait. The hospital web site had said an eight week wait for an appointment but when I phoned the secretary she said that the consultant triages the cases according to your GP's letter and it would probably be 12/14 weeks but it stretched out to 24 weeks 

    If you have had CMT all your life what were your symptoms before the mumbness started.?

    How do you cope with the lack of feeling when walking on different types of surfaces? I started with numbness  that I could cope with but in the past three weeks it has worsened by becoming a lack of feeling that leaves me unbalanced at times and I had a bad fall last week.

    Hereditary motor and sensory neuropathy or Charcot-Marie-Tooth disease genetic blood tests were done this morning but evidently take up to three months to complete.  I think that at 80 any hereditary diseases would have caught up with me long ago:-)

     

    • The_Forester
      The_Forester derek76

      Posted

      Hello Derek,

      This conversation has been expanded considerably...along with a few others you may find interesting at Healthunlocked Charcot-Marie Tooth if you are interested

      I have some difficulty walking on uneven surfaces so, when we go on our daily walks in the forest I use a pair of Nordic walking poles...brilliant! They help me enormously with stability.

      Regarding your other question about my symptons before this...they have been many and varied...but manageable...this is the first time I have encountered a sympton that has caused me real concern.

      Please look on HealthUnlocked website to follow another conversation on TENS/EMS to relieve the discomfort...see you there.

      Emis Moderator comment: I have removed the link as we do not link directly to competitor websites. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • The_Forester
      The_Forester derek76

      Posted

      Hello Derek,

      I responded to you earlier but the reply has not been accepted by the forum moderator yet because I included a link in it to a different forum where this conversation has been taken up and discussed at some length.

      So I will answer you without a link.

      CMT has been  factor in my life since I was 15 but I have made a concious effort to ignore it as much as possible. It has limited the range of physical things I have been able to do, so I have done other things instead...can't run...so I walk...can't jump..so I go round things...all that sort of stuff.

      Unlike my three sisters who are crippled with it, CMT has been an inconvenience rather than a problem to me, until recently.

      This thing of the numb ankles has made me sit up and take notice...determined not to let it interfere with my lifestyle...easier said than done though.

      I walk in the New Forest every day with my wife...now balance has become more of an issue I use Nordic walking poles to steady myself...brilliant...they work a treat...

      I make a point of walking on difficult surfaces sometimes just to show CMT that I can be as bloody-minded as it can...bu it is becoming harder to stay upright.

      My advice to you would simply be don't give in to it...walk with a stick if you need to...two sticks if you have to and draw what comfort you can from the fact that there are a large number of people in this country suffering from the same condition as we are...it's very interesting to read how some of them cope.

      You could meet them on the other site if you had a mind to...it's called HealthUnlocked and we are all in the CMT section

      I have just bought a new TENS/EMS machine to see if that will help...early signs are encouraging and I have an upcoming appointment with a neurologist so life will be interesting if nothing else.

      Good luck to you...and be of good spirit. See you here or at the other site. ( I am just called Forester there)

    • derek76
      derek76 The_Forester

      Posted

      Thank you. You walk in the New Forest we walked on the South Downs but not very much at the present time. I have been using a walking stick for about six years because of a knee problem that comes and goes. At the moment my foot problem is causing me to put more weight on it and it is starting to ache.

      As I posted elsewhere my sudden deterioration to my mind has a reason away from any neuropathy and I am blaming the Bisoprolol I am taking for my irregular heart rate.

      Three weeks ago I was coping with pre syncope from my AF and light headedness from the medication along with my worsening numbness and went to a horse show and was standing/walking for about five hours. The next day I went to the races and was out for seven hours but since then the numbness has changed to lack of feeling when I put my foot on the ground but touch/scratch my foot and I still feel it and the unsteadiness increased. I stopped the Bisoprolol on Wednesday night and felt worse on Thursday/Friday/Saturday and Sunday but much better today and some feeling is coming back to my foot.

      In a conversation under the AF banner someone answered my post who had a similar experience that improved when he stopped Bisoprolol.   

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