I am a 50 yo male, my tangible symptoms (ie. when I first became fully aware of my neurological weirdness) began at the age of 36 when my feet and legs really became numb and the pain set in. In my youth I was a champion canoeist, and all -round sports enthusiast. My Father first displayed symptoms in 1977 and after subsequent years of mis-diagnosis (ie. phychosomatic) is now wheelchair bound. I know now that this is my fate too - the past 14 years for me have been a pain in more ways than I can say. I am not a whingebag or a moany git by nature but it truly pisses me off when people dont believe me when I say ... It F**ckING hurts, it is very real and is quite debilitating. CMT (type 2 axonal for me) is a reality - it would be great to be able to touch someone who is deemed to be qualified to "assess" you and let them feel how it feels for at least a minimum of, let's say, to be kind, perhaps one hour... or so.

Yes I know that I am ranting on...

7 Replies

  • Telling the so called experts is not ranting'its great to read an honest approach

  • oh big hugs to you i know where you are coming from but i have learned to take a light hearted approach and say to people well my dad did not leave me with a silver spoon in my mouth but he left me his feet toes and joint problems lol . I used crutches daily to get around but even that is proving more and more difficult and have to rely on my scooter more

  • Dear Jamie,

    So sorry to hear about your pain. It does get you down doesn't it? My family also have type 2 and the prospect for my sister and me is a bit daunting after seeing our Dad die slowly from the toes up. At least we do know what is wrong with us and are not constantly being misdiagnosed with something new every other week as our poor old Dad was - everything from chilblains to ankylosing spondulititis - and given useless or damaging treatment in the pursuit of some doctor's hobbyhorse. There is still a long way to go to make the medical profession aware of the disease.

    Do hope you can find some better pain relief,

    Best wishes,


  • Aw Jamie I know exactly how you feel.. I used to swim competitively and play basketball.. In my late 30's the same as you with the pain and things 'not working' but I was diagnosed with MND initially so was very happy to learn it was a misdiagnosis to CMT type 5.

    If you ever want to vent then vent were all entitled to! Xx

  • I said the exact same thing to my partner a couple of days ago. I wish more than anything I could touch the so called experts who have written me off, disbelieved what is glaringly obvious to everybody else, and let them feel the pain I have endured the last 2.5 years. Let them feel the agony of every step, and the burning pain in my spine. If they could, their entire approach would be different. Hang in there, you're not alone, and we all need to vent :)

  • It's a total pain isn't it? I get a consultation for between 5-10 minutes, once a year with my 'Specialist' at Queen Square Hospital for Neurology and Neurosurgery in London. Last appointment (september 2014) he was too busy and sent in a stand -in who treated me as a new patient and gave a thorough exam - 7-8 minutes of all the archaic prodding and poking with sharp instruments - "please close your eyes and tell me when you can feel this, is it sharp or blunt, tell me when you can feel it..." meanwhile I have so much neurological misinformation due to nerve degeneration that I can't tell if it's sore or not! bizzarre... I try to tell him that the numbness and pain have spread to my scapula and it took another 5 minutes to convince him that I wasn't just imagining the symptoms... his initial suggestion was that it was an unrelated sensation, when I suggested he continue with the jabbing and prodding with a pointy stick he eventually conceded that it was indeed probably due to and part of my CMT symptoms - this from a consultant at one of the highest regarded Neurological clinics in the country - pioneered by the late Dr Bannister no less, a brilliant man.

    Aargh - anyway, don't get me started, they are all doing their best (to get a new Bentley) .

  • Jamie - I shall no longer have any lingering suspicions of feeling underprivileged and deprived as a result of living nearly 500 miles away from Queen Square ! My neurologist is no expert on CMT ( he covers a huge range of neuro-probs) but is kind and courteous and diligent and always willing to do his homework and learn more about it.

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