my introduction

[Guest guest]

Hello, my name is Deb, I'm glad I found this site.

I don't have an official CMT diagnosis but have been told by a specialist in PN

at Mayo that I have a hereditary PN 'autosomal sensorineural  neuropathy type

1'. Of course I've been searching the internet and found this is another name

for CMT.  I'm 58, the pain started about 14 years ago but looking back I had

milder symptoms before that.

I also have lupus which is under good control and I assumed my symptoms were

related to it but my doctor says I have two different diseases. Sometimes it's

hard for me to sort out the symptoms.

My foot pain has actually improved some in the last year but I know that isn't a

good sign as my nerves are dying. I have numb areas too. In the last few months

I've had symmetrical muscle atrophy in my feet, legs and buttocks and some in my

shoulders, arms and hands.

In five months I've lost 15 lbs. without dieting. I have some weakness and pain

in one ankle and both knees and I have balance problems. I have constant pain

in my shoulders and some mild neuropathy pain in my hands. I am much weaker than

I was but can walk and do all care activities myself.

I live in constant pain that 6 Vicodin a day barely touch, also fatigue. I

haven't been able to work full time for 11 years due to lupus. Ok, those are the

facts but I still have a wonderful life, understanding, supportive,

informed husband, great children and 5 grandchildren.

I'm a quilter and lots of my energy happily goes into that hobby. I work very

part time. I do fear losing more ability and am dwelling more on it now even

though it has been gradual. I'm going to physical therapy for shoulders and

knees and I exercise on the Wii fit and walk a bit. I'm the type that over does

it then pays.....thanks for reading this long post. I'm looking forward to

meeting you.

Deb