I have either CMT or a peripheral neuropathy - the neurologist can't seem to make up his mind! He claims that at my age (75) it is pointless testing further as there is nothing, other than pain relief, that can be done. I am chasing that up further when I can get an appointment with him again. I do have all the classic symptoms of CMT and these are increasingly worsening. My problems are increased as I also suffer from advancing arthritis, especially in my hips and knees which add to both the pain and my mobility.
Can anyone else who has multiple issues advise on the best way to convince the medical profession to properly follow up on the effects of having multiple complaints?
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Skyman1944
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Hello skyman,
I understand your complaints I can relate I deal with the same things. My neurologist diagnosed me with CMT and told me to read up on the disease. I take gabapentin and 5 mg of oxycodone with extra strength arthritis Tylenol., It does not take the pain away but it makes it bearable.
I’ve had both of my knees replaced and it’s funny they still hurt, it’s due to the nerve issues. I’m Having surgery on my right foot this summer, I’m not looking forward to surgery but hopefully will get a little bit of relief.
One thing that I read about the CMT, and it applies also to other neuropathies which I did not know, A couple of articles stressed keeping the limbs, hands feet arms and legs warm especially when it’s cold. I have a heated throw blanket and every time I sit down I wrap it around my legs and I elevate my legs and I cannot believe how much relief that has given to me this winter! The article said the cold can actually make the nerve damage worse if the legs, feet, and hands are not kept warm. So I sit with my heating pad on my back and my blanket on, it makes me so incredibly hot that I have to turn on the fan… LOL
Unfortunately there’s really not a whole lot more that we can do for this disease, hopefully you don’t end up needing surgeries due to it but I do try to do walking steps to walking video on YouTube and keep my muscles strong and yes it is painful to do but I have to try to keep our muscles strong .
I’ve tried to find little hobbies to do because I can’t do a whole lot of stuff anymore so I make these for my 13 grandkids are you hanging birdfeeder is in the yard and get my grandkids involved in that and it helps take my mind off of the pain.
UnFortunately that’s one of the perks of getting old, I hope I said something here that might help you.
Thank you so much for the reply. I was vaguely aware that heat was a factor in helping relieve the worst of the pain but didn't know just how much the cold can actually damage the nerves. So often my feet and legs feel they are encased in tight bands of ice yet feel quite hot to the touch.
I note well your comments about having had knee replacements but the nerves still hurt as I expect to shortly be offered at least a partial left knee replacement due to arthritis. I will have to give this a bit more thought.
I am currently (just) able to maintain part time employment in a local convenience store which allows me to mix sitting and movement. I aim to keep active for as long as I can but have to say that there has been a massive increase in the disability over the last six months. Perhaps I will have to review this.
I hope you will remain as active as you can with the minimum of pain.
Hi, I was just diagnosed (I’m in my 40s). You mentioned 13 grandkids. Do any of your children or grandkids have CMT? I’m so worried for my children as it has a 50/50 inheritance rate. Also did you have the blood test? Thank you
Your frustrations and anger are well understood by your fellow
UK wide CMT sufferer's:
Consider the following points ?
Your NHS Neurologist has probably already recognised that you are
indeed suffering from CMT Neurological Disease without needing to
arrange the usual blood tests, which are sent to a "specialist" University
laboratory for diagnosis:
Why a) Cost £10,000 (circa) b) Take 6 weeks to tell him what he already knows:
c) At present there is no known cure for CMT d) Only positive management,
and acceptance of this disease is possible :
You almost certainly were born with this genetic mutation, inherited from a parent:
When this disease starts to display itself, is at a different time to each sufferer:
Your bodies MYELIN "wax-like" sheathing which wraps around, and insulates your long peripheral nerves to your lower limbs, including your fingers, and hands is
defective, and it leaks:
Therefore over your lifespan your muscles will ever "so-slowly" deteriorate, leading
to deformity, muscle wasting, and restricted physical movement(s), and associated
pain levels, all due to the lack of a strong signal pulse 'NOT' being received at a muscle group:
I know where you coming from I have the same I'm 77 it is something that can't be cured or reverse I'm afraid you have to carry on with life the best way you can cope & enjoy life. Sorry it a negative reply. All the best
so sorry to hear that you have CMT too, it's a shame your dr won't investigate but if you have other family members they might need to know if they carry the gene, perhaps? That's good advice about the heat, a dr once told me heat uses a different, quicker, nerve path to pain and that's why heat helps so much but I didn't know cold can cause damage. All the best, Lynne
Good morning skyman,
My neurologist told me I have Pescavus & HMSN, Otherwise known as CMT.
My neuropathy was diagnosed long time ago and has gotten progressively worse as I’ve gotten older, And the worse it’s gotten the worse my muscles have become in my legs. I used to jog many years ago and now I can barely walk sometimes, It also affects my digestive system and my swallowing.
From what I’ve read for the CMT and the neuropathy, the treatments look pretty much the same, he left it up to me to go for more testing. I don’t want to, I’m tired of all the tests, It’s too painful and I’m tired of going to the doctors all the time 😁
I had a range of difficult illnesses when very young, including rheumatic fever and St Vitus' dance. I don't have any information on what medication was given at the time, or indeed what other conditions were involved which resulted in me loosing 1 yr schooling and being in a wheelchair for six months. I know that at one point the doctor was visiting on a daily basis. Unfortunately I don't have any family left who would have any information on this.
Dear Skyman, Sorry about your problems. I also had rheumatic fever when young, but I was the only one in a family of CMT type 2 sufferers so I doubt whether that is factor. Do look at your family and see if any of them have any symptoms, which with your experience and hind sight could indicate that they are also affected. There is no cure but managemnt from the early stages can slow down progress of the disease. My symptoms didn't really affect me until I was in my fifteies but once I knew what was wrong I could see that it had been there for many years. In fact it was 35 years between first going to a doctor about a symptom and actually being diagnosed. I don't have arthritis, but didn't find gaberpentin any use for nerve pain. A combination of Tramodol aand paracetamol can help.
Does it not seem unlikely to you to be diagnosed with a hereditary genetic condition at your age. Do any of your near family have it ? None of mine do.
I had genetic tests at 81 that did not indicate it nor did it seem likely from the electrical conduction tests but a later consultation with a different neurologist at another hospital gave a 15 second diagnosis on seeing me walk in. He questioned if the tests had been the right ones or that they had been interpreted correctly. When I said this to a consultant in a different speciality he said "That is typical of him"
I was dishcharged after my diagnosis for the Same reason. No cure so go home and get on with it, sort of attitude.There is a support group that you might like.
Skyman..I too have multiple factors including CMT...I feel your frustration at the Dr.s attitudes. My symptoms began age 30. Final DNA diagnosis at 60. Age 71 now and wheelchair bound. Arthritis is a component with me as well. One leg very crippled from hip down. Over the years I kind of guided myself through MDA clinics, warm water therapy exercising, seated tai chi...anything i could do to maintain muscle strength. Skilled therapists have helped with mobility and balance. I urge you to look anywhere you can for self help because they may not know what to offer, but if you ask they could help you find it. I find that I myself know more about CMT than most doctors do. I feel as if I educate them as I describe what is going on within my body. I encourage you not to fall between the cracks. Be very proactive to the extent you are able.
My Dad had this disease but no final diagnosis. He said it was his "old war injuries"....the obscurity of diagnosis and appropriate treatment is definitely frustrating. My youngest daughter has it, and she can now benefit from what I am living through, hopefully. They are testing different drug ideas..as time goes on perhaps she will not suffer the same things?
I wish you well and encourage you to keep searching and working on what could help your symptoms, keep your life as good as it can be for as long as possible..best of luck and God bless..
Hi, I am new to the site and not sure how to post but ... I was just diagnosed (I’m in my 40s). Do any of your children or grandkids have CMT? If you have kids, how many out of how many total ended up with it? I’m so worried for my children (and future grandkids) as it has a 50/50 inheritance rate. My dad has it and out of me and my sister I’m the one who got it. I have two children. 🙏🏻 😃
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To return to what you wrote - first I'm sorry you have CMT. A diagnosis can certainly take a period of digesting and getting adjusted to. I hope you have a supportive partner / family / friends. Do you think in retrospect that your CMT was actually evident much earlier on, or has it really only made an appearance recently? If symptoms started for example before you were10, then it is likely (but not guaranteed I think) that it would appear early in any affected child.
I have no living relatives, but my grandfather (who had CMT) had four descendants- (my mother, my two aunts and me). Of these, one aunt missed the faulty gene and the remaining three of us inherited it. Just the luck of the draw.
Skyman, I'm 70, but like one of my doctors told me that's young in Florida. I don't know where you live, but in the U.S. sunny Florida is a favorite retirement location. I saw numerous doctors. Finally my primary care doctor said he was sending me to the University of Florida, a medical school/teaching hospital. My 1st appointment was with a neurologist. After answering questions from my childhood/family to the present time, looking at my feet, & watching me walk she immediately said I had Charcot Marie Tooth disease. She explained the disease & told my husband & I to go have lunch. When we returned she did a nerve conduction test & EMG. She ordered a DNA test which was done with saliva. UF is a center of excellence for CMT. This was about 3 years ago. She also prescribed AFO & orthotics which help with walking. Your doctor says your too old to get a diagnosis. Find another doctor. Being told I had a rare incurable disease that would get worse over time wasn't time to celebrate. But I was happy in an odd sort of way to finally know what was wrong with me. I had basically spent 2 years in bed, using a wheel chair & lots of falls. Now with the AFOs, physical therapy & mentally feeling better I'm up every day & only use a cane to help with balance. The sad part is I haven't been able to drive for 3 years. Thank heavens for a wonderful husband. I also have rheumatoid arthritis & a few other problems I won't bore you with. Seriously it's your body & you need to know. I hope you get a diagnosis. Keep smiling, it makes people wonder what you are up to!
This discussion is interesting given that most of it took place 5 years ago. Of my six siblings four of us lack feeling in our feet. My Mum used to complain of heaviness in her lower legs. She had Parkinson’s towards the end of her life so we just put it down to that. When I mentioned this to my GP she mentioned that it could be CMT and described it as a form of neuropathy. I had thought it might be associated with my (so far untreated) CLL or maybe the Duputreyns I have in my hands. She thinks it is a separate issue. She was pretty matter of fact and said we should just learn to ‘manage it’ which I am doing. Mine feels like I am wearing tight socks all the time. No real pain or burning. I have to watch my balance. Have had two knee replacements in the last two years and they are great. A bit annoyed that I am not coping with stairs without rails or walking on uneven ground now I have ‘new knees’ Oh well onwards and upwards (hopefully!)
Hello. I am 66 and was diagnosed with CMT in my early 40s. The symptoms have increased over the years, slowly at first, but much more significantly in the past 5 years. Joint pain in both knees and hips has gotten bad. I've always felt that lack of balance was the worst symptom. To keep moving, I go to the local Walmart and walk, using the cart for stability. I use an app on my phone to measure distance. The rest of the day I use a cane for stability. Good luck to you, and everyone. The no known cause or cure part is so frustrating.
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