Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 04-12-2015, 06:57 PM #22
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Default

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 This has been disproved and my pain is quite severe, but many sites repeat outdated information, even the Mayo site has lots of inaccuracies.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.
Susanne C. is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
baba222 (04-12-2015), EmilySH (04-12-2015)
 


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Motor Skill probs with Post concussion syndrome, I think dysfungirl Traumatic Brain Injury and Post Concussion Syndrome 1 02-23-2011 10:47 AM
A Mouse Model of a Human Motor Neuron Disease BobbyB ALS News & Research 0 01-09-2008 03:54 PM
TRIAL: Motor Skill Learning in People with Parkinson’s Disease Stitcher Parkinson's Disease Clinical Trials 0 05-23-2007 08:29 PM


All times are GMT -5. The time now is 02:44 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.