Saw PN Specialist today...have DX
 

Well it's official - I have been dx with Charcot-Marie-Tooth disease. The Neurologist is not sure if it is Type 1 or Type X.

I asked him to explain to me if all my sx fall under this dx. He said no. Basically only about 50% or so of my sx can be classified as CMT. I asked him if he could explain the balance of my sx. He said no.


I asked him if we where going to look into the cause of the balance of my sx. He said he would forward a letter back to my GP. There was no other testing ordered and no follow up appointment.

He told me that my Nerve Conduction Study today showed a severe disability but my neuro exam does not. Hummmmm-what the heck is that suppose to mean.

He also asked me if my Father (he has been dx with CMT type 2) is sure that he does in fact have CMT. Ummmmm, What the heck does that mean.

ANYONE ELSE ON HERE WITH CMT?

Hoping all my US friends are having a wonderful Thanksgiving.

(hugs)

Lynxgal

Riddles!
 

At least you have some answers and are 50% closer to covering your symptoms. It would be lovely though for something to explain all the sx - possibly at lot of us are in that place also!

Is the Neurologist going to try and elicit whether you have the type 1 or other type of CMT or is he leaving it there?

I agree sometimes these doctors do seem to speak in riddles!!!!

Megan

HI Megan,

Yes they are going to try to confirm the actual subtype with genetic testing. That is a good way to look at it 1/2 way there. Kind of like the glass in 1/2 full not 1/2 empty. LOL. I need to work on my frame of mind. Have to find my happy place again.

CMT and Hereditary Neuropathy have forums and lots of info....just use the search words and you will find the sites.

there
 

There is a member here...named Kitt.

She has posted that she has CMT. You might PM her.
I don't know if she comes to PN forum often or not.

She is very knowledgeable about it.

explanation
 

As one who doesn't speak the language what is sx and dx?
thanks

And about your CMT - I didn;t read other posts you wrote. what are your simptoms? how long and how they started?

sx (Sx)= symptoms
dx (Dx)= diagnosis
Rx = prescribed or prescription

Hi amit..

My symptoms that got me going to the doctor were severe vertigo and memory blips (does not seem to be related to CMT). Within 6 months I developed sensory symptoms (tingling, vibrating, numbness). Shortly after that fatigue, muscle twitching and muscle spasms. Within 18 months time I have gone from a healthy person to having difficulty walking, pain, balance issues even while sitting and weakness in my arms and legs.

CMT does run in my family and it is a usually a slowly progressive disease.

I am doubting the diagnosis and am waiting for the genetic testing. There are still too many unanswered questions.