CMT symptoms

General General CMT Discussion
1

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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Please see replies to your same post under a different title...

3

HI freeway,

Welcome to the group! I do not have CMT, I'm just a helping hand here, but also suffer from degenerative genetic diseases, and injury from car accidents, so I have some similar struggles that you mention.

I'm not the expert here, but have learned a great deal about CMT from my friends here. I'm in the USA, but have made friends here on various groups from the UK who struggle with similar issues. Please understand that I will respond the very best that I can, but the members here are the ones who can pick up where I leave off.

First let me ask if you are being treated by a Neurologist? If not, can you request one, or request a Dr who is familiar with CMT? I think you may really have to nag and insist on this. You deserve to be treated by a Doctor who is familiar with your disease! You also deserve to have a Physical Therapist to help you with motion, flexibility, and strength. Like I said, I"m not an expert, but think I"m on the right track. Members, please advise if I am not. Your input to this group is what makes it work. This is YOUR group, please contribute, and correct me if necessary! I will certainly not be offended!

I have torn both of my Achilles tendons, and later linked these to taking the antibiotic Levaquin, so I know this pain.

http://www.zimmreed.com/case/levaquin-tendon-rupture/

I went through intense physical therapy both times and lost a considerable amount of motion with this. Gentle stretching exercises was the key to this, and I believe it would most certainly help you, but I think it needs to be guided by a professional. If this is not possible, your Chiropractor is most certainly versed in this and can be of tremendous help.

I also have a tilting pelvis, which sounds similar to what you describe with imbalance of the pelvic girdle. This can make walking so painfully difficult! I have used a Chiropractor most of my life, and the adjustments really helped, but since my Internist told my husband and I that there is a place where my spine is 'disconnected', he will not allow me to go back. He and my Rheumatologist have advised exercises to help with this, but sometimes it just doesn't straighten out quickly enough!

I also have scoliosis and spinal stenosis, and many collapsed discs, degenerative facet disease, degenerative disc disease! So I 'get' a lot of this!

I know that many of our members struggle with vertigo and the spinning sensation that is described with Meniere's.

http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/definition/con-20028251

and have mentioned that physical therapy can also help with this.

I hope this had been helpful to you in some measure, and I certainly send my sincere hope that you can find a way to get to a better place.

Wishing you well,

SK

4

I HIGHLY recommend you buy this book. Right now. What your doctor may not tell you about fibromyalgia.

http://www.amazon.com/gp/aw/d/1455502715/ref=mp_s_a_1_sc_1?qid=1428113956&sr=8-1-spell&pi=AC_SX110_SY165_QL70&keywords=what+your+dotor+may+not+tell+you+about+fibromyalgia

There are things you describe which may not be CMT. This book may connect some serious dots for you. It may be in your local library. That’s where I found it. Potentially life changing.

HIGHLY recommend you do this right now because you are clearly looking for answers and not getting any help from your doctor. This book is not like the others.

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Hi Sophie,

Thanks so much for responding to freeway, and trying to help. I have Fibromyalgia too, and moderated on that group for years, did extensive research, and still work hand and hand with the current mods there.

As far as Guaifenesin, a cough expectorant, there has been controversy about this for years. According to the professionals I have talked to about Fibro, to explain it in a few words, it's a stress response, injury, illness, stress, untreated chronic pain, exposure to toxins, something serious has pushed the body past it's limitations, and Fibromyalgia is the result.

There is really no proof, but the man selling the book, is the only medical professional that believes this has much value what so ever. According to the experts that the Fibromyalgia Network have chosen to side with, the only thing that Guaifenesin could possibly help with is to clear the airways if congestion is constantly present, and allow for better sleep, but there may be safer expectorants, and they should only be taken as needed.

Here it is considered a consumer alert.

http://www.fmnetnews.com/coping-resources/consumer-alerts/product-6

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I too have experienced the severe back pains which radiated through my arms. It started happening out of the blue, kept me up every night. I propped myself up, slept with pillows under my legs etc. I saw a chiropractor, thinking I had a pinched nerve. X-rays did not show damage. I followed up with my neurologist who confirmed this was my cmt progressing. It took months to subside. I was not given anything for it. This was the visit where my Dr put me in leg braces and hand braces. This did help tremendously. I too suffer with the shooting pains, cramps etc but have been told there is nothing that can be done. I choose not to take any medications at this point. I prefer a more natural approach to dealing with my pains. So far I am managing. It does sound like you go beyond cmt with what ails you. I wish I had answers. Your symptoms and what you are experiencing do sound like cmt…please seek out a Doctor familiar with this disease or research and take the info with you when you see one. I wish you the best of luck with this.

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l know that the health care system is way different in the UK than it is here in the USA. The best thing any of us can do is be our own advocate. Research and keep going back to the Dr until they find out exactly what is wrong. l knew for years that there was something wrong, but was not diagnosed until l was 47. Even know l have a strong history of CMT in the family it took that long! UGH it is frustrating but your health is more important.

For anyone who is overweight and having back pain or inflammation of any kind, l highly recommend a gluten free diet. lt is getting easier and easier to obtain these foods or eliminate grain completely and eat protein, steamed veggies and fruits. l know l am not totally there in that department of eating correctly but l still try. Also give up processed sugars!!! That is the worst addiction for me.

With the proper braces you should feel much better and be able to stay mobile. Strengthen that core and do stretches everyday. l take gabapentin in pill for and have it in a cream compound as well. This helps with the shooting pain and nagging fatigue.

Good luck!! Message me if you need to. Connect on FB if you want with a PM. My profile is listed in this profile page.

~Tami

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tga said:

l know that the health care system is way different in the UK than it is here in the USA. The best thing any of us can do is be our own advocate. Research and keep going back to the Dr until they find out exactly what is wrong. l knew for years that there was something wrong, but was not diagnosed until l was 47. Even know l have a strong history of CMT in the family it took that long! UGH it is frustrating but your health is more important.

For anyone who is overweight and having back pain or inflammation of any kind, l highly recommend a gluten free diet. lt is getting easier and easier to obtain these foods or eliminate grain completely and eat protein, steamed veggies and fruits. l know l am not totally there in that department of eating correctly but l still try. Also give up processed sugars!!! That is the worst addiction for me.

With the proper braces you should feel much better and be able to stay mobile. Strengthen that core and do stretches everyday. l take gabapentin in pill for and have it in a cream compound as well. This helps with the shooting pain and nagging fatigue.

Good luck!! Message me if you need to. Connect on FB if you want with a PM. My profile is listed in this profile page.

~Tami

9

I do suffer much of these problems but really have no solutions other than learning to manage by controlling the daily activity and manage the pain with cold packs ;Recently, at the suggestion of some others here, I tried the medication, began using Gabapentin cream rather taking orally; The cream helps so much as I can put it right where I hurt.

At present I'm experiencing so much pain in the top and left side of my left foot like the ankle bones are grinding each other; My feet roll in due to muscle wasting and its difficult to walk as we do not have the tendons and ligaments to control the foot like it should.

In past, have had inserts made for my shoes to keep my foot up in right position and its been about 10 yrs now since had new one so time to go back t my ortho care giver. Braces ( double helix style) helps the foot drop to walk with less effort but the inserts are a must to keep foot in right position b/c if it rolls then deteriorates much more.

Pins and Needles are part of the nerve deterioration and only thing helps is to use heat or cold and as I said the Gabapentin has been great in the topical use! Using Magnesium helps with the cramping,take orally supplementals or soaks in Epsom salt.

Know this. . .We are all understanding and have been and share with you the difficulties! Talking it out does help b/c to feel validated is something we all need!

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I think you all have learned to 'manage' a very tough genetic disease very well. I only get a glimpse of segments of your lives and thoughts, but am amazed at your courage, determination, and ability to adapt.

11

My son had several surgeries on his feet & tendons. His feet were curling under so much he couldn't walk. After his diagnosis his bone doctor moved bones & tendons & muscles & lengthened his tendons. Now his feet are straight & flat. It has kept him from having to use a wheelchair & now uses a walker. He wore leg braces for years but finally quit them as they were too painful.