By reading this posts, it seems as though when I read generic symptoms online that fit CMT you don't quite fit into that category. I thought legs were impacted most in CMT and foot abnormalities seemed common, causing gait issues. And it seems your progression has been slow? I am not sure. I need to read back through some of your posts so you don't have to rehash all your symptoms. I guess I should have probably focused on "symptoms can vary greatly between family members" when reading online. Sometimes reading things online can be misleading, I assume. I need to start reading more scientific, peer reviewed resources and journals. And you are right, there are so many types and variants. I am happy you do not currently suffer in your arms or hands. My thoughts and prayers are with you. Thanks for your input in my case.

I am not sure I understand the buzzing symptom I hear a lot in this forum. Terminology can be tricky is this illness, at least in my experience!! I try to explain how I feel to others and a lot of time I just say "odd sensation", because everything just seems so odd and foreign to me. Like my arms, they feel like they are not connected to my body sometimes. I wake up and they feel mildly asleep, not numb, buzzing, just strangely awkward and heavy. I have had a hard time with my arms because I used to sleep with one under my pillow or above my head. I certainly cannot do that anymore, so I have started bending them at the elbows and placing them on my chest. I have the same problem with the dishes too, and like you said I now also do a few at a time and don't push it, or do it daily. I have moments (3-4 during the past two months) where it has been extremely difficult to raise my neck up from a laying position, terrible pain. Not sure if that is a spasm, more like a sharp jabbing. My shoulders def. have muscle twitches, along with many other muscles in my body (side, arms, abs, calves, neck, back, lower jaw, etc. etc.) Not sure if this helps, but it is always good to have support and know people are going through the same health issues. I hope you have a good day today

I have been a member of this site for nine years and before that I was on the old forum. If I am reading your post correctly, that I don't quite fit the category, I assure you that I do have CMT. Family history goes back a long, long way. You can have symptoms when you are young, old, or in-between. Or you may not have any noticeable symptoms but you still can have CMT. And, yes, symptoms vary greatly even within the same family. I certainly can see that.

You can have flat feet, normal feet or high arches. You can have hammertoes but not all do. I do not. Hammertoes, drop foot, etc. can be caused by a lot of things. Many in the general public have one or the other. Also, I have normal looking feet. Not everyone has drop foot either. Or it may not be that bad if they do have it. Hands and arms can be impacted as well. Mine at this point are not but time will tell. The rest of the family going way back does have both hand, arm, leg and foot issues/weakness.

CMT progresses no matter what you do. CMT does not come on just like that and all of a sudden there you are. But CMT does progress. I have known about CMT since I was five years old. I have kept up with all the research that is being done - and there is lots - for many years now. And much was before the Internet. This information is all from reputable resources.

As far as EMG/NCV testing they can tell the type via the testing. When the myelin is damaged (CMT type 1), the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT type 2), the speed of nerve conduction is almost normal, but the strength of the signal is reduced. CMT is a multi-gene disorder and so there are many different defective genes which cause the disorder.

CMT affects the peripheral nervous system (PNS) and therefore it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms (numbness). CMT is progressive no matter what you do. A neurologist who is an expert in CMT would be the doctor to see. I cannot say that you have CMT. Only a good neurologist can help you there. You certainly do have something going on. Hope you get to the bottom of it.

My buzzing is feeling like I have a low level electrical current running through my entire body. I wake up feeling like this just about every morning. It will stop as soon as I start moving around.

It will set in at other times during the day if I'm stationary too long. Again, moving stops it. For whatever reason, getting my motor nerves active will settle down this sensory problem.

Thanks for all this information!!
I did not by any means mean to come across as insinuating you didn't have CMT. I am sorry. I know you do! I was just stating that I am absolutely un-educated in CMT and most other neurological disorders because this is all very new to me. I just wanted to get the point across that reading things purely online or googling symptoms can be misleading for someone like myself that has not been researching or dealing with this for several years. I have by far gained the most experience and education from this forum, from people like yourself. And I am so grateful there is a forum like this available for people suffering from neuro symptoms and not knowing what the heck to do about it. I know that no one on here can dx anyone, but the support def. helps me and I know so many others like me!! Thanks for educating me in CMT and supporting me in finding some answers

Emily, with your symptoms I would expect an abnormal EMG/NCS. Once you have numbness in your feet and lower legs it will probably show up on a skin biopsy as well.
Some of my symptoms were gradual and ignored as just being clumsy, lazy, etc. I had a dysfunctional family situation which complicated things, it was in no one's interest to diagnose me with a genetic disease since I was the product of an adulterous relationship.
I did develop hand and arm weakness very suddenly about 8 or 9 years ago. I couldn't hold plates either, and couldn't take wash out of the washer, carry groceries, etc. it was diagnosed after an EMG as carpal tunnel, but this was later found to be incorrect as it was a flare up of the CMT. It is usually gradual but there can be exceptions. Everyone is very different with this disease as Kitt said and anything you read will probably make unwarranted generalizations. It used to be thought that pain was uncommon with CMT. This has been disproved and my pain is quite severe, but many sites repeat outdated information, even the Mayo site has lots of inaccuracies.
Physical therapy gave me back a lot of strength in my hands at that time. Later I lost range of motion in one arm such that I couldn't dress myself, again therapy helped. Last year I sprained my ankle and physical therapy allowed me to continue driving a little, I have virtually no motion in my ankles now, but can drive for about five minutes which takes me to the doctor, dentist, and food store.
The doctor should be very interested in your family history, if they aren't diabetic this must have a hereditary component. Your symptoms are perfectly consistent and should be taken seriously.
It took my podiatrist to actually get the ball rolling. He refused to treat me again after I went to him with a foot infection ( he did treat the infection ) until I saw a neurologist. He said I had the worst neuropathy he had ever seen and that bilateral neuropathy in both hands and legs wasn't simply carpal tunnel, especially with my other symptoms - high arches, tight Achilles' tendons, poor gait and balance, etc.. He thought that my height (6'2") made it all worse since it is length dependent.
Another thing that caused a sudden worsening of my symptoms was Tricor, a medication I was given for extremely high tryglerides. It quickly exacerbated my balance issues to the point that I could no longer walk without falling. I improved as soon as I stopped it on my neurologist's hint.
They should try to find out if there is a treatable cause for your symptoms, but CMT is progressive and incurable. My neurologists both said "good-bye and good luck." Chronic disease makes doctors uncomfortable. It is a relief to have a diagnosis and the progression is usually slow, but it is a big thing to accept, especially at your age. I hope they can help you.
I was extremely flexible when I was younger, except that the muscles in back of my legs were always tight, and so is my one son, although less so than he used to be. I have read of other CMTers with this trait.

I feel the same. Hard to stand on my feet too long. I have to set down. I am dropping things as well, but not all the time. I have to really concentrate on holding things and that helps. When holding a pen or pencil I feel I have lost some grip because I have to stop every few written words and pick up the pen, it slides down my hand. Thanks for letting me know a EMG/NCS will show up if I have motor involvement. I don't know if my weakness is clinical or "perceived". I am scared about my neuro exam because I don't want to be told it is just in my head. I hear so many people on this forum being told that. That is my biggest fear, I think. And of course the future, but for now I am trying to be as optimistic as possible because I know stress can make this worse. Thanks for your input. Sorry you have been suffering with this so long.

Hi there Emily,

Rarely would anyone have a perceived weakness rather than one that is there. You have gone from automatically writing etc., to having problems writing. A suggestion is to try to be as calm as possible during the neuro exam. Save your questions until the end and hopefully the neurologist will answer them.

A neurological exam is very thorough and will feel like you have really been examined. And stress does not help, but RARELY causes the sensory symptoms.

Unfortunately, my husband had to say, "I have known my wife for 20+ years and she has changed." Finally that helped with doctors starting listening. I had to act like I was not really hurting when I was so scared and in so much pain. Not getting enough sleep did not help either.

Oh, and if you are going to a teaching place, find out if someone is an attending/resident/or fellow at the beginning. They are supposed to tell you that, but don't always. You might be able to ascertain that from the provider's web site.

This is particularly important if they come in alone and then bring in someone else. Part of your story will be wrong, deleted, or confused with dates and or symptoms.

I am really hoping that you will be heard and that the neurologist you see will be professional.

Godspeed.

Emily if this has only been going on for 8 months it is possible that there might not be enough damage yet to show up on an EMG/NCS. Just to prepare you in case. this doesnt mean the symptoms arent real or caused by stress. It also doesnt mean that your pain or symptoms arent proportional to the damage you do have. It just means that an EMG/NCS does not have the sensitivity to detect below certain levels of damage. If damage to the axon or myelin sheath is detected by an EMG/NCS it may be categorized early on as mild or mild to moderate. Again this doesnt mean it isnt painful or debilitating.

I started out in October 2001 with symptoms but didnt have an EMG/NCS until October of 2003. By that time my PN was moderate to severe already. I was exposed to high levels of toxins for an extended period of time so no surprise there.

Even if your emg/ncs comes back negative now, it could turn to positive in just a few short months. I hope this helps.