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Hi everyone I am interested in now how many of those of you with CMT have a neurology consultant , I am 65 have CMT, if I have a problem on any health issue I go to my doctor, if I need any aids to help me with my CMT I purchase it, I take pain relief for arthritus in my hands and wrists and general pain relief to do with the condition, but other then that I do not see anyone about my CMT, after reading some people's posts I wonder if I should be consulting my doctor more about the condition and see what are on my medical notes as to the type and what my notes say

[HorshamMalc]

Interesting you should ask that question. I went to see a dental implant surgeon for an assessment yesterday, and was asked for a letter from my neurological consultant stating that my CMT wouldn't present an issue. I had to reply that I don't have one.

"if I need any aids to help me with my CMT I purchase it"

The NHS will provide orthotics etc if you get a referral from your GP (assuming you're in the UK).

[Hidden]

I am also 65. I used to have a consultant before I moved house 3 years ago. I had one appointment a year. He used to be 2 hours late for each appointment and did absolutely nothing. I stopped going.

BUT you should see a consultant ( at least he will no what the letters are an abbreviation for ) he may be able to point you in the direction of physio' etc

[DawnD]

HI. I have a neurology consultant. Only found out about CMT about 4 years ago now, after my Dad was diagnosed in his late 70s (no family history as he was adopted) and we realised that all the problems I had had with my feet and walking were to do with this. My GP was very good, and immediately referred me to Addenbrookes, where I quickly got an appointment. I see the consultant once a year - he said to keep having the appointments otherwise I would have to be referred again by a GP if I stopped, and if I was already under a consultant, it would be much easier if I needed anything.

[Hidden in reply to DawnD]

Thank you, I think I will go to my doctor and have a chat with him,

[Caroleanne-2468]

Hi I'm 64 and have CMT 1E . I didn't get a diagnosis until about 5yrs ago. I realized after all the years of suffering with different physical problems that when a family members granddaughter had been diagnosed that it was very likely what I had. I was sent to see a foot and ankle specialist who told me he was 99% sure that's what I had but would have to be diagnosed by a neorologist. I go to see him yearly to discuss how I'm managing the condition. I can't really say that he supports me in any other way other than i got an official diagnosis through blood tests , nerve conduction tests and finding out the type. Like you I've got certain aids myself. I have recently purchased mobility scooter which has really helped when my husband and me are out and about.

[spabbygirl]

I used to see a consultant every year, but recently that hasn't happened and my GP refers me when he thinks it necessary. I found it very useful and the consultant would suggest more than a GP would, depending on the GP though.

[Hidden]

That's interesting, I have never been offered the opportunity to see a consultant, and if you don't now then you don't now what's available, that is where sites like this is so valuable I am going to make an appointment next week, and not feel as I'm wasting their time and sort a few things out. Thank you

[missspain]

hi,Kallmeier, Im 67,have c.m.t. 1 a. ihave no help from any one ,in fact my g.p. seem s to know very little about it .in fact they seem to dismiss it if i mention it .that s the way it has always been.my mother saw a neurology consultant years a go told her she had peripheral neuropathy,i was with her at the time he examined me said iv got it to.he said on need seeing a neurologist there is no cure nothing can be done so just get on with your life and that s it.over the years i have struggled quite a lot to the point now i can't walk with out my walking pole plus holding on to my partner.i fall trip,my feet give me that much pain all the time even in bed.[i do have orthotic s help to pick feet up] but they hurt so much.i have no ballance the list go s on to long for this letter any way.when i first got my computer there was no stopping me, after reading many book s plus on many web sites i thought yes this is just me,in fact i saw all my problems and difficulties in print.at last iv found out what i have.

i have a grown up son with the same problems as me,i payed to see a neurology consultant for him after test s he has c.m.t. 1.a.just as i thought.SO THAT THE HELP IV HAD or not.dont get me wrong i don't want to spend my time at hospitals or seeing doc s but i would like some help now as i really do struggle.my own g.p.seems to push it aside if i mention C.M.T.

[Ladywonder]

I always wondered the same thing I have had CMT for 30 plus years doctor's haven't the slightest idea about it never ask or say anything to me it was only recognized and raised because I needed a hip replacement now need 2 knees thinking shoulder as well arthritis has set in all over. I have no idea what type I have etc. Was never talked about in my family nor is it yet. My mom and siblings all have it some worse than others afraid to know if my adult children have it worries me everyday they haven't shown signs but now I'm noticing little things :/ noone Everett mentioned specialist nor are any available near me I'd have to travel few hours !

[lowther1 in reply to Ladywonder]

Its 50/50 I have one son with it, affects him with tiredness he has scolliosis of the spine. One son without it. And my daughter has it in feet and ankles, tiredness and balance is a big issue as it is for everyone. She has decided not to have children.

[missspain]

shocking treatment [or should i say NON TREATMENT ] most of us have. g.p s. don't want to know.

[Ronald60 in reply to missspain]

Same issue here in the USA. Frustrating trying to find any doctor that knows anything about it, and if they do, they just want to say “nothing can be done” and change the subject.

I wouldn’t wish this on anyone. My twin brother took his life over the depression and attitude of no help from the doctors.

Horrible disease!!

[Amanita]

Hi, Kallmeier,

In my 60's when I was really not coping any more, I went to my GP. Fortunately I had had an unofficial diagnosis of CMT many years earlier (long story), so at least was able to give him the name of what I thought was causing my problems. Of course he had never heard of it. After persuading him that a couple of visits to a physiotherapist wouldn't sort me out I eventually got him to refer me to a consultant neurologist . Although the consultant knew little about CMT he made it his business to find out, and in addition to arranging nerve conductivity tests and a blood (genetic) test, he sent me to a physio, an OT and an orthotist. I saw the consultant six-monthly to start with.

When he left this part of Scotland for greener pastures in Glasgow, he handed me on to a very nice lady consultant, whom I see yearly. She takes an interest in my ( i.e. the CMT's) "progress" and I feel she is supportive even if she can't really do anything. Living alone and having no relatives at all I really value that.

I needed my Consultant's backing when applying for a Blue Badge and later a Disabled Person's Railcard (as although my mobility was very poor I actually didn't fall into any official category that entitled me to them). When I wrote to tell the DVLA I had a neurological disease I had to give them his contact details and he confirmed that I was safe to drive.

Having read the above posts I appreciate even more how lucky I am.

I wish you luck with making an appointment to see a neuro-consultant, and hope he/she will be helpful.

[LoolooLacey2 in reply to Amanita]

Hi, I have been reading your post albeit a year old. I have finally been referred to a Neurologist and luckily the Clinics are held in my home Town (Scotland). I am also being referred to the Pain Clinic which is in Dundee. Can I ask where you come from and who is your lady Consultant? I have all the classic symptoms and signs of CMT and have had them for many years. I am now 66 years old. My son attends the Neurologist for peripheral neuropathy, so now he can take some information about me with him this month to his Clinic appointment. He is beginning to show loss of muscle in his lower legs and tripping occasionally, he can be very clumsy to spilling things or knocking drinks over, he is 44. I believe there is a CMT Specialist in Glasgow at Queen Elizabeth University, but not sure how you would get referred there! Perhaps my son and I can now get some answers to our ongoing problems. I just wondered where in Scotland you live. It is good you have a good Consultant who takes an interest in you even though there is not a lot they can do. I already have an OT service and am looking for more help from them soon. All the best.

[Ladywonder]

I have had CMT for at 40 years as well noone ever asks how it's doing or talks about it see only a regular doctor never a referral have no idea what type I have my mother grandmother and siblings all have it not sure about my kids yet who are now adults . Never had them tested nor did I want to know if I plaqued them with this disease . Only time a doctor brings it up is when I broke a bone told them majority brush it off as they know nothing surgeon for my hip was a different story as CMT complicates things alot . Pretty sure doctor's notes say nothing except for when my doctor from years ago did general test said I have it . Not many people have it around us .