What are the signs of CMT?

[Phil82]

Hi I'm new here and wondered if you could give me some advice.

Ever since I was a teenager I have always had muscle tightness and a funny walking gait the past couple of years it seems to have got worse (I am now 36) and starting to go through the dr's, physio, podiatrist and it looks like I need to be refered to a neurologist.

I seem to have a lot of symptons that match with CMT such as walking heavily on the outside of my foot, muscles tigtness in my arms and hands, champagne shaped legs etc but then I don't seem to have the leg deformaties that a lot of CMT people seme to have and no other underlying health issues (until a few weeks ago I was regularly running about 15miles a week) so I am not sure if I have CMT or some other neuro/muscular tightness issue.

Can I just ask a couple of things do people with CMT suffer with muscle tightness all over? it seems like my muscular system is always tense and doesn't relax the same as a normal person. My main legs muscles are very tight but also very bulky, I have a tight back especially in my neck and down into my shoulders and across my shoulder blades and tight hand muscles where I find writting difficult, does this sound common for people with CMT?

When I ask the Dr's about CMT they seem to say that I can't have it because I have to much muscle bulk on my calf and quads and CMT is a muscle wasting condition, however my big toe and ankle flexibilty has actualy got worse recently so I am worried that I might have wastage in my foot and the bulky muscles in my legs are those muscles compansating for the loss lower down in the foot.

One final quick thing do you all wear the heel down on your shoes rediciously quick? I go through shoes for fun (in a matter of weeks) because I seem to be getting heavier and heavier on the outside of my foot no matter how much physio I have to release the tension in my legs.

Thanks for taking the time to read and any advice greatley apprecaited.

[Amanita]

Hi, Phil82,

One of the commonest symptoms of CMT is foot drop - difficulty with lifting the front part of your foot, so that you are liable to catch your toes on the obstacle you have just lifted your foot to step over. This can also affect your gait by causing you to put the front of your foot down heavily - instead of heel first and the rest under control. Toe deformities (e.g. hammer toes) are common, as are very high arches , and a tendency to walk with your weight on the outer sides of your feet. Other symptoms can include weak or absent reflexes, weakness in hands, feet, wrists and ankles, - plus reduced sensation in feet and lower legs, hands and forearms. Some people unfortunately also experience neuropathic pain.

CMT is an umbrella term for a number of hereditary neuromuscular conditions which affect the peripheral nervous system (ie all the nerves outwith the brain and the spinal cord). This causes messages from the brain (e.g telling your fingers to grasp a pencil) to be either slowed down or weakened, and messages to the brain (e.g. to tell it that you have just stepped on something sharp) to be similarly compromised.

The further a nerve message has to travel, the more it is slowed down or weakened, with the result that, starting with your feet the muscles start to deteriorate from lack of stimulation.

CMT is usually inherited ( offspring of an affected parent have a 50% chance of inheriting the faulty gene that caused it) but it can arise spontaneously.

It is known "progressive" - a fine term in politics - but here meaning it continuously worsens (usually slowly) during your life.

It is very variable both in severity and symptoms, even with members of the same family who all have the same faulty gene. A minority of people need a wheelchair before they are 20, and some can still walk pretty well in their 70s.

I have personally never heard of tightness in muscles being caused by CMT.

I hope that this can give you more of an idea of what CMT is.

It does sound as though you would benefit from being referred to a neurologist, so I wish you all the best , and hope you will not have to wait too long....let us know what happens.

[Phil82 in reply to Amanita]

Thanks for the reply very interesting especially that tight muscles aren't normally an issue for people with CMT as its my tight muscles that are my biggets problem.

The foot drop is interesting I think I have mild foot drop in that I drag my right foot through because I don't have the ankle dorsiflexion to lift it up however I do walk heel toe (which I am told is a good thing) but my issue is I am so heavy on the outside of my heel.

As well as the Dr's saying I have no strength issues I also have no problems with reflexes and sensation. I can also balance on my heels which someone told me was a good test for CMT.

The Osteopath the other day was very worried about how tight my neck was which has always been very tight since I was teenager and he seems to think that is a neuro issue as it's the start of the spinal cord.

Maybe I have some other peripharl neuro issue not CMT but with my high arch feet we share a lot of the same symptons. Also the other thing that led me to CMT was that I have a 6 year old son who has inherited my high arch feet and is strating with similar issues to myself.

I doubt I will get very far when I go to the Dr's on Thursday as they just say there is nothing wrong with me and I just need to stretch more (I already stretch 3 times a day!) but will keep you updated.