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Old 04-22-2015, 03:10 PM #4
Coriny Coriny is offline
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Join Date: Mar 2015
Location: near st louis
Posts: 41
10 yr Member
Coriny Coriny is offline
Junior Member
 
Join Date: Mar 2015
Location: near st louis
Posts: 41
10 yr Member
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Quote:
Originally Posted by Susanne C. View Post
If you are working now without too much difficulty you can probably continue for a long time. A lot depends on what type of work you do and how far you have to drive. Are you definitely getting AFO's? I do not have them yet, I am getting some type of brace, not those exactly, not sure yet about driving but my doctors are horrified that I drive as it is, but I only go in about a four mile radius, no highways. My reflexes are too slow for that.
I was a stay at home mom, taught English for a year three years ago, did fine but wasn't on much medication then. It really tired me out and could get very painful. The cold was the worst of it. I am 53 and this condition has slowly worsened throughout my life.
What type do you have, if they didn't give you a type is it myelin or axons? What are your symptoms now? It moves slowly but in my experience there can be big drop offs then a leveling off.
Physical therapy has helped with with the big drops- loss of strength in hands due to a flare up, arthritis in the spine, sprained ankle, etc. it is generally not considered to be very helpful in the long run for muscle atrophy which is inevitable, but I think it can delay things a bit. I have never regained normal function from it, but I have improved a little. It is important to have a therapist who understands even a little about CMT and doesn't push too hard or too long. Mine knows when to quit, and it isn't when they normally would. I stop regaining strength much sooner than without CMT.
You are right, it could be worse.
I have leveled off in a debilitating state. My hammer toes have no feeling and are curling more and more. I am numb to midcalf. Cold as ice until I have an episode of swelling and fire. That happens about once every 2 weeks. Still trying to figure out what triggers it. My hands are always numb and tingling. I exercise them at least 2 hrs a day using large metal balls and stress balls (the metal balls cause pain, stress ball.. not so much). I have no fine motor skills at this time. I have demyelinating as well as axonal. I am just beginning physical therapy. I have been doing low impact yoga to my ability.
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