Visit to the neurologist

[Guest guest]

Well, yesterday I had an appointment with a neurologist who specializes in

neuropathies. I was quite impressed with her knowledge about CMT and other

neuropathies. I was diagnosed with CMT 4 months ago in South Africa, and

now that I am back in the USA for a few months. I wanted to see someone here

to confirm the diagnosis and see what kind of ideas she would have to help

me manage my symptoms.

Right now,my symptoms include numbness in both feet

and lower legs, and slight numbness and weakness in my hands. I also have

some weakness in my toes and ankles, but not enough to cause foot drop or

tripping. I also have a condition called hemifacial spasm which affects

both sides of my face.

She pointed out that there has been some research done indicating a possible

connection between the two, so this was interesting to note and may answer some

questions about my facial spasms.

I will be having an EMG next week to compare results from the EMG's I had in

2003, August 20010 and now. I felt it would be good to get a good baseline EMG

done here in the USA. And I don't find them overly painful- especially compared

to the Botox shots I get for the facial spasms.

Here are the things she shared with me that may be helpful to some of you-

especially those of you who have also been recently diagnosed with CMT.

1. Safety is primary. (this has been a recent topic of discussion in this

group). I need to be careful not to fall. Although I don't have much weakness

in my feet, I do have significant loss of sensation (numbness).

Numbness can lead to falls, because your nerves are not telling your brain

precisely where you feet are, which can affect your balance. So you start to

rely more on your eyes to do the balancing for you. It also explains why it is

harder to maintain your balance when walking on uneven ground, going down

stairs, or walking in the dark. I can walk up hiking paths just fine, but

always struggle going downhill and feel like I need to hold onto something just

in case I slip. Now I know why! So when I get back to South Africa, I'm going

to buy a cool walking stick because I love to go out hiking in the nearby hills.

I also am more prone to frostbite (I am currently in Minnesota) and burns from

hot water in showers or baths because

I cannot accurately feel the temperature with my feet and hands. She

suggested testing water temperatures with my elbow. And of course I need to be

aware that my shoes are not pinching my feet in any way that might cause

blisters, etc.

2. Nerve threshold. I wish I had taken better notes, and if any of you

could comment on this it would be great. Muscles are controlled by the

nerves, but when the nerves become damaged, it can then affect the muscles.

The nerves usually go through a slow process of becoming damaged, and muscle

involvement is usually not noticed in the beginning stages. But you get to

a point where too many of the nerves are damaged and the muscle is then

affected (nerve threshold). This result in a muscle " all of a sudden " not

working as it should.

3. The important thing is not to make the nerves sick (as she put it). If you

are noticing a sudden deterioration in your symptoms, it is good to check out

that other factors such as vitamin deficiencies, thyroid or blood proteins are

normal- because they could be contributing to the severity of the CMT (making

the nerves deteriorate, which would cause further muscle weakness).

Those were the main points I got out of our conversation. I will see her again

next week at the EMG and will ask any other questions I may come up with between

now and then. I will be seeing a psyatrist this morning to discuss things I

could do exercise wise to help in this whole process. The neurologist felt

exercise would not be harmful to my CMT, and would be helpful in keeping the

muscles strong. She was surprised that I have such strong leg muscles, and

thinks it may be because I have exercised regularly throughout my life (I am 53

years old). That's all for now.

Blessings,

Barb