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Old 01-25-2014, 11:23 AM #24
Susanne C. Susanne C. is offline
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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
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Yes, cold weather is very much of a problem for many PN cases and all CMT. As Kitt said we all have cold feet and legs all the time, and keeping warm is a challenge. I wear long underwear in the house- and keep the thermostat at 72.
My husband and I were just discussing whether we really should move to a warmer climate- the rational answer is probably, but being from the Philadelphia area and being very attached to it we could never move.
My hands are numb now, especially in the mornings. My son, at 29, can no longer play the piano for more than a short time. He is very affected and frequently turns his ankles. You must watch those ankles- if it is CMT they become very thin and fragile. Some store bought bracing might relieve your mind.
The stress that you describe in your personal life could easily have brought out your symptoms- stress, medications, other illnesses, often activate latent CMT, or aggravate existing PN. It is important to get a handle on that as much as you can. Your plan to move into management is a good one. My son is a university professor in China, and feels that teaching is a good career for someone who is disabled, as he is likely to be, having severe symptoms at his age. While you cannot tell how fast and far your disease will progress it makes sense to plan what you can for the future.
If your doctor suspects CMT and mentioned it, and your father has symptoms, that is probably what you have. You cannot assume, and neither should your family, that because his symptoms are mild that yours will be too. On the other hand you do have to get on with life, you are too young to quit, and are still in relatively good shape. My father acted like there was nothing wrong with him, but he drank constantly to kill the pain, and could not get out of a chair. I have a half sister who wore leg braces from early childhood. It affects everyone differently. I was clumsy and uncoordinated as a child, and walked on the sides of my feet.
On the other hand, it will not hurt to study and follow the guidelines here for supplements and diet and lifestyle guidelines, as they have been found to help many people. If yours is not CMT after all, you may be able to benefit from them.
Eventually you will get used to the sensations in your feet and legs and it will not be so distracting. My legs are currently numb to hip level. I really do not know how I manage to walk, but I don't think about it much at all. The first few steps are always hard, but then I just keep going and it gets easier.
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"Thanks for this!" says:
Kitt (01-25-2014), mrsD (01-25-2014)
 

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