CMT and secondary symptoms

General General CMT Discussion
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Hi I am from the UK and having had to wait years for a diagnosis after suffering pain and fatigue for many years and my feet becoming more and more deformed I eventually after searching on the internet and discovered that i had all the criteria of CMT and my doctor agreed and sent me for tests and the i was prescribed painkillers for the pain and that was all i was helped with .I then started to fall quite regular as my feet would buckle under me causing considerable pain and this would often be quite dangerous as it would sometimes happen when i was crossing or by the road. I was then eventually prescribed ankle braces which have to a certain extent helped but I still have shooting pains that will often shoot through my feet or ankle and sometimes through my Achilles. My Doctor has no idea how to treat me as he has openly admitted that he has never come across anyone with CMT and so does not understand the help that i need and so prescribed me ordinary pain killers which did nothing to help with the pain and i had to do some research on the internet to find that Gabapentin would alleviate some of my pains. Over the last 10 years i have also suffered from severe back-aches and even had an ambulance called one day by my doctor as i was in so much pain and could not even walk but by the time i was seen by a consultant at the hospital the back pain had disappeared . Many times i asked for an X-Ray but the doctor refused saying that they will only do X-Rays on the back if there is a suspicion of cancer and so after years of suffering with the pain I paid to have a private X-Ray done with a registered chiropractor and he found the I had scoliosis of the spines with an imbalance of the pelvic girdle due to the way that I walk. I also now have a B12 deficiency and Folic acid deficiency which I have to have injections for every 8 weeks. Does anyone else suffer from this , this causes me to suffer from pins and needle down my arms and legs which can also spread over my body and also very painful muscle spasms. I also have balance problems which the doctors have put down to Menieres syndrome when at its worst can cause the room to spin around violently and cause me to vomit.

I am sorry for the length of this post but was wondering if anyone else has the same symptoms and is there any advice on medication .thanks

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Scoliosis is common in CMT. Back pain, nerve pain and muscle pain is experienced by many as well. Often, the pain is secondary to gait changes and a result of other muscle groups making up for the weakened muscles.

I have B12 deficiency but it is because of long-term PPI and H2 antacid use. I get injections. B12 deficiencies themselves can cause a host of problems because B12 is essential to DNA synthesis and many other bodily processes. In fact, an extreme deficiency can cause peripheral neuropathy worse than CMT and can certainly cause shooting, stabbing, burning, and pins and needles pains (nerve pains) if it's bad enough.

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Oh, and as far as advice on medication for nerve pain, in addition to gabapentin, you might want to look into carbamazepine, or the tricyclic antidepressants. If you have access to different strains of marijuana, a high CBD strain can also be effective and CBD only preparations are legal in many states and countries. Opioids are less effective for nerve pain and some of the side-effects (ie. addiction) are less than desirable.