Re:What to expect - signs and symptoms

[Guest guest]

'My mom is in her 50's and is just starting to show signs.'

Hello Danieta

I was wondering what kind of signs or symptoms are noticed by adults, such as

your mother, as they begin to think that things are not quite right. How long

might it be before these signs are severe enough to make the person think they

had better go see a doctor to find out what is going on? I would appreciate

your

thoughts, and others too, if they would like to comment.

Thanks

Helen

[Guest guest]

<< She has a mild case and the doctor said by it coming on so late that it

would probably not progress much but you never know what will happen with

this. >>

Some symptoms may include being numb to the touch but having nerve pain

inside the feet/legs, and or hands/arms. Or numbness without the pain.

Atrophy (shrinking) of muscles is a symptom, especially in the calves. (Some

of us, like me, have normal size calves). Unusual fatigue without reasonable

cause. Frequent falls, twisting ankles, sprains, tripping over nothing,

and/or breaking bones in the feet/ankle may be clues. Feeling that one needs

to hang onto or touch something when standing still. Difficulty with stairs

or curbs. Balance problems. Sensation of frozen or burning feet or hands.

50% of CMTers have significant pain, 50% do not. Some have nerve pain, others

have structural, or both. Some have no pain.

In times of great stress a mild case may turn into a much more serious case,

so be aware. It sounds as if you already are.

Examples: My mom had her first symptoms after my dad (83) suddenly passed

away and she felt she needed to clear out their house. It was quite full of

stuff he had collected, and a lot of stressful work for her. She was in her

70s. She progressed rather rapidly after that, from slight weakness and

numbness to bedridden in 10 years. She fought it all the way, exercising like

mad because her doc claimed she was just lazy. Hard exercise caused faster

progression, IMO. She was never diagnosed. During those 10 years I helped her

stay in her own home, AND I helped my aunt by cleaning out her VERY full

house (that took almost 2 years). All that stress set my CMT into full

progression.

My mom started with numb legs, then burning feet and weakness. My aunts told

me Mom was crawling up stairs when they were invited out to lunch where there

were stairs and no handrail. That was the first I knew something was wrong,

as mom was very, very independent and never wanted to be a bother to anyone.

She went to a neuro who did an EMG and a nerve biopsy and came to no

conclusion, other than to tell mom she needed more exercise. She had raised 5

kids and had rarely sat down, she always kept so busy. Her burning feet (she

slept with them outside the covers for several years, same as I did) changed

to frozen feet after a few years (same as mine did). Then she slept with her

feet on a heating pad or a hot water bottle. She never complained or told me

what was going on, I had to observe. I also learned that she could no longer

walk up a very short incline, like a curb cut, so she had to walk in the

street instead. She got by with a cane for a year or so, then she used a

walker for the next 8 years. It was impossible for her to stand even for a

moment without her walker or something else for support. Her only foot

trouble before her 70s was losing a large toenail. Her small toes were rather

curled, but she had low arches, not high. I am the same.

I could tell when Mom had exercised too hard because it took her days to get

some strength back, but her docs had told her to exercise vigorously so she

did. That generation was very trusting of the medical community. She never

seemed to recover back to where she had been. Through it all she kept her

delightful sense of humor. It was a pleasure to spend time with her each day.

After mom passed away at age 86 I realized my symptoms were following hers,

but mine started about 20 years earlier (younger) than hers had, in my 50s. I

went to a different neuro and was diagnosed rather swiftly. The more I learn

about CMT the more I regret not knowing about it while I could have helped

her. She wouldn't have died thinking her progressive weakness was caused by

something SHE did wrong. Life is full of regrets.

Kat

[Guest guest]

<< She has a mild case and the doctor said by it coming on so late that it

would probably not progress much but you never know what will happen with

this. >>

Some symptoms may include being numb to the touch but having nerve pain

inside the feet/legs, and or hands/arms. Or numbness without the pain.

Atrophy (shrinking) of muscles is a symptom, especially in the calves. (Some

of us, like me, have normal size calves). Unusual fatigue without reasonable

cause. Frequent falls, twisting ankles, sprains, tripping over nothing,

and/or breaking bones in the feet/ankle may be clues. Feeling that one needs

to hang onto or touch something when standing still. Difficulty with stairs

or curbs. Balance problems. Sensation of frozen or burning feet or hands.

50% of CMTers have significant pain, 50% do not. Some have nerve pain, others

have structural, or both. Some have no pain.

In times of great stress a mild case may turn into a much more serious case,

so be aware. It sounds as if you already are.

Examples: My mom had her first symptoms after my dad (83) suddenly passed

away and she felt she needed to clear out their house. It was quite full of

stuff he had collected, and a lot of stressful work for her. She was in her

70s. She progressed rather rapidly after that, from slight weakness and

numbness to bedridden in 10 years. She fought it all the way, exercising like

mad because her doc claimed she was just lazy. Hard exercise caused faster

progression, IMO. She was never diagnosed. During those 10 years I helped her

stay in her own home, AND I helped my aunt by cleaning out her VERY full

house (that took almost 2 years). All that stress set my CMT into full

progression.

My mom started with numb legs, then burning feet and weakness. My aunts told

me Mom was crawling up stairs when they were invited out to lunch where there

were stairs and no handrail. That was the first I knew something was wrong,

as mom was very, very independent and never wanted to be a bother to anyone.

She went to a neuro who did an EMG and a nerve biopsy and came to no

conclusion, other than to tell mom she needed more exercise. She had raised 5

kids and had rarely sat down, she always kept so busy. Her burning feet (she

slept with them outside the covers for several years, same as I did) changed

to frozen feet after a few years (same as mine did). Then she slept with her

feet on a heating pad or a hot water bottle. She never complained or told me

what was going on, I had to observe. I also learned that she could no longer

walk up a very short incline, like a curb cut, so she had to walk in the

street instead. She got by with a cane for a year or so, then she used a

walker for the next 8 years. It was impossible for her to stand even for a

moment without her walker or something else for support. Her only foot

trouble before her 70s was losing a large toenail. Her small toes were rather

curled, but she had low arches, not high. I am the same.

I could tell when Mom had exercised too hard because it took her days to get

some strength back, but her docs had told her to exercise vigorously so she

did. That generation was very trusting of the medical community. She never

seemed to recover back to where she had been. Through it all she kept her

delightful sense of humor. It was a pleasure to spend time with her each day.

After mom passed away at age 86 I realized my symptoms were following hers,

but mine started about 20 years earlier (younger) than hers had, in my 50s. I

went to a different neuro and was diagnosed rather swiftly. The more I learn

about CMT the more I regret not knowing about it while I could have helped

her. She wouldn't have died thinking her progressive weakness was caused by

something SHE did wrong. Life is full of regrets.

Kat