View Full Version : My (not ALS) neuromuscular condition is terrifying me

08-02-17, 05:48
Last year I found out I have always had a condition called Hereditary Neuropathy or CMT. Turns out my mom and sister and grandfather all have/had it as well. It's why we have weird high arched feet and are bad at sports.

Mine got worse this year (I was 37) causing sensory symptoms (pain and numbness in my feet and hands) and motor symptoms (most obviously my toes curling a bit, but also ye olde twitches of doom!)

I'm still walking without a cane--though more stiffly--and typing and picking up cups but my general neurologist suggested I might see a neuromuscular specialist to monitor things (after seeing my toes). I also made the mistake of showing my psychiatrist (who was trained in neurology a long time ago) my legs and feet. She saw a fasciculation in my right leg and wondered if I didn't have some atrophy in my right calf. Oh yeah, I saw the podiatrist who predicted further muscle wasting in my calves and cheerfully told me I would have 40 more years of this.

prognosis is something like 5% of people reach the wheelchair phase. No one that we know of in my mom's family has gotten there. Later onset of troubling symptoms is a good sign. For some reason my sister and I seem to have it worse now than my mom did at the same age.

Whenever anyone confirms neuromuscular symptoms I start worrying about ALS again. Even though I've been diagnosed with this other less terrible thing. I keep testing my hand because I suspect my right hand is less dexterous (which it very well might be, my sister has a tremor). I've been staring at my body. I've researched assisted suicide (!!)

I'm alone and fear of increased disability really terrifies me.
I know if you have BFS the right thing to do is to ignore your twitches. but what if you do have a muscle-wasting problem, just a much milder one?

p.s. btw, don't worry about having this unless you have weird high-arched feet and poor coordination from childhood and there is a strong family history, with no generations skipped, with the same symptoms. Basically, don't worry. But advise me.

p.p.s. I have a therapist and take meds. It's kept me sane enough to stay employed and paying my bills for the last year, but not much else.

Oh yeah, Trump has not helped things.

08-02-17, 06:01
Calm down and enjoy life! Start a hobby or go on a cruise lol. Stop worrying about Trump he'll do 4 to 8 years and be gone. Focus more on your local and state official . They are the ones who affect the us the most. Try to stop worrying and have e some fun. I wouldn't ignore the symptoms accept them and let them go. Try to not harbour on them.