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Charcot-Marie-Tooth UK
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Hi can you please answer to my question. It will be very helpful for me thx

Hi can you please answer to my question. It will be very helpful for me thx

Hi. I'm 28 yeara old and I have charcot Marie tooth, the question is with the ages it will get worse my foot and my hands. Please answer to my question and if I made surgery for my high arch foot I will still have problems? Thank you

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Hi Marjus. I'm sorry, but nobody can answer that question as we are all different. CMT is a progressive illness, but that progression may come in fits and starts. You may go years without any further deterioration, or it may come quickly. For instance, my Dad, although his high arches got him out of national service, and he tended to kick his foot out when he walked, showed no other obvious signs of CMT until he was in his late 70s and started falling over. The hospital did various tests and found he had CMT1A. This solved the mystery of the problems with walking and my feet that I have had all my life, but because CMT1A is inherited, and my Dad was adopted so there was no medical history, it was not picked up on, even though my doctor knew about my feet (I have had to have my shoes made for me for decades now as it is impossible for me to buy shoes in a shop) and also that I have no reflexes (another symptom).

Regarding surgery - sorry, no idea. I have not had any surgery. The options regarding my feet were to have about a third of each foot chopped off (I have very wide feet as well as high arches) or have shoes made for me - I opted for the shoes!

All the best

Dawn

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It is really hard to know, as Dawn says. You can never tell exactly what problems each of us will have and how quickly they will happen. I had no family history of CMT at all, and I knew each of my parents medical history because they were alive to tell me. But there are some cases where there is a fault genetically that happens to one person. Its called a new mutation & after that its hereditary. All the best Marjus

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Dear Marjus,

With luck surgery will make your feet more stable and help with foot pain, but it won't stop further deterioration, although a better walking action may slow it down. Your muscles may weaken more quickly after surgery and your sensory input from your feet and lower legs will continue to decline. After three major lots of surgery on my feet and waiting for another, I would still say go for it as it has helped so much with pain. If you are walking badly because of distortions in your feet, you are putting extra strain on already weakening muscles and adding to pain. Surgery is not a cure but it can make life easier and more comfortable for a while. Check out the credentials of your surgeon.

Best wishes,

REGreen

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Hi thanks for writing to me. Which country did you made the surgery

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In Scotland, UK.

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Hi Marjus looking at your foot reminds me of my dads only his was a lot more deformed not one toe touched the floor, as for mine after numerous operations since I was 12years old I am now almost seventy I still have awful pain and discomfort.

Everybody is different,my hands and my balance has got worse over the years,I will try anything to make my feet comfortable I have one dropped foot,the other is fused so I need my stick/crutch for balance.surgeons are becoming more aware of Charcots so hopefully the future may bring new ideas keep your chin up keep and keep as active as possible I have just finished doing excersise with a physiotherapist to try and build my muscle wastage so I have something to focus on,I always worked and did the best of what I've got.good luck.

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I'm a mom of a 14 yr old boy. He was diagnosed with CMT at a very young age. He had feet surgery on both feet when he was 4 yrs old & then again when he was 13. Up to this day his toes still don't touch the floor, I buy sneakers about every 2-3 months cause the sneakers turn just like his foot. He is always in pain especially in the winter. Lucky his a very active kid. Since he turned 1 yr old till know he had 9 surgeries in total. From his back to his hips, to his knee, to his feet. Its very hard to tell but his foot looked just like yours. He had his surgery in CT. Thank God everything is going alright for know. The doctor said he will eventually be on a wheelchair but cant say when but just to keep that in mind.. As long as he exercise & stay active that will prevent him from that at an early age. My son hands are still pretty strong, Doctors said cause he plays a lot of video games that is very good cause it keeps his fingers moving. I told the doctor I had told him to stop playing so much video games & he said don't stop him. My husband also has CMT he was diagnosed at 39 yrs old. He works 2 fulltime jobs & still moving. Yes his always hurting but he said he cant stop moving because if he does he will be hurting more. He has been working 2 jobs since 18yrs old. I guess the key word is exercise & stay active because if you stop you will be hurting more. Best of Luck!

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i think you should go for surgery because it can help you with the severity but as people have said it wont stop detoriating sorry but thats all i can say

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you should read online and go and book an appointment with a neurologist they help alot doctors dont mention this to you hope it helps

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Hello to Marjus ...... If you have been correctly tested by a Neurologist, and who has diagnosed Charcot Marie Tooth Disease (CMT), they will have also identified the exact 'Type' you have: I have always warned Cmt sufferers, do not rush into orthopedic surgery, as it is always a "Trade-Off" ? Yes ! you may gain something, however you may lose something: Also be very careful if children are the patient(s), as the have a lot of growing yet to come:

In answer to you question, my answer to you is "YES" ! you will continue to have problems at a later date: Remember CMT is a 'progressively-worsening' neurological disease, and will be with you for your remaining lifespan:

Best of health ...... John (Glasgow)

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Hi Marjus , my foot looks similar to your ! Am a 32 year old male ! My hands don't function properly either ! But Iam very active ! I train at the gym 4 times a week ! And quite a strong runner regardless of my feet ! I can't lift heavy weights ! But I believe this active lifestyle defo helps ! Best of luck moving forward ! Kieran

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