Checking in

Hi I'm Wulf. 47 years old, been through 5 neurologists to help me deal with very bad restless leg syndrome. Then 10- 15 years ago I started having new symptoms during the day if I was sitting for a while like watching TV or driving a car. Out of the blue it felt like someone shuffled across a carpet and zapped the bottom of my foot. Needless to say my foot would jump and I'd be like what the heck was that? Over time instead of a lightning bolt the sharp pain would last longer and longer, sometimes 20 seconds of gritting my teeth and waiting for it to pass.

I've always been a bad sleeper and I do shift work at a manufacturing plant.... steels toe shoes and concrete floor. So then if I tried to take a nap during the day i wouldn't get RLS symptoms, my feet feel like someone has a hair dryer on high heat and has it right over the tops of both of my feet. No amount of movement would make it go away.

If that wasn't enough I find out that I had a brain tumour. It was on the auditory nerve left side of brain. (technically not a "brain" tumour as one neurologist pointed out) it was actually a tumour of the myelin coating that wraps the nerve as it enters the brain. Hmmm, any chance this is tied to my RLS doc? Nope. Oh ok.

Neurologist number 5, it's your turn with the guy with some strange different sensations that don't belong to RLS (which I do have, but it has it's own symptoms).

The tech lady comes in to hook up the electrical test machine and notes my freezing cold feet and asks if they are always this cold. I guess so, I can't really feel cold, I can stand on snow or warm tile and can't tell the difference. So she grabs a hair dryer to gently warm feet before testing begins. 10 minutes later they're still cold, the Neurologist walks in and asks tech how long she'd been using it and glanced at my feet as he walked around the bed. Charcot he said softly to the tech, she nodded and agreed.

They did tests and I have numbers that are at the very bottom of the scale, and then the Doc looks at me and says that he believed I had CMT because my feet are cavus and i've got hammer toe, both indicators of CMT. (I'm suffering from country music television? LoL)

Tests done and I don't show up in the top 40, and the doc tells me the next battery of tests will be about $4700 if I wanted to do them. I'm in Ontario so I don't have to pay but really what would be the difference if I know the exact version of CMT?

Not much he admitted, other than your obligation to tell family members to get checked so that if they're planning kids they may want to know about the possibilities.

So I said thanks but no thanks, I know enough to answer why I have all these very strange things happening to me.

Tripping going up stairs all the time, can't stand on one foot without falling over. (brain surgery took my hearing and balance on left side of my head, I had to relearn how to walk, yadda yaddda) yet Iiiif I strapped on my ski boots I could ski one footed for 200- 300 meters on either foot, why????

Now with CMT i know that my feet have little to no muscle left in them, when you put on ski boots the clamp to your foot and shins, then my balancing is with the muscles further up the leg where I have muscle and have retrained brain on how to balance.

Amazing the "questions" having a proper diagnoses can solve.

I go down the list of things that screw me up, and simply check the boxes off.

The reason I joined here is that the latest symptom kept me awake all night despite the 3 meds I take each night to combat RLS, that would knock out an elephant.

Does anyone have the sensation that you can feel like your blood is getting forced into your legs and you can feel as if the veins are pulsing with high pressure? From the knees down I have that and something like pins and needles that hasn't gone away in 2 days, it's non stop.

Couldn't sleep as it hurts enough to wake me from medicated sleep, thought I'd see if I could find info and found this site.

Sorry for the long ramble, but I'm know you all have your own stories that non-CMT people simply don't "get".

Howdy from the great white north!

Well I see I've had 37 views with no interest shown. Sorry to waste your time.

Good bye

Hello Wulf, sorry that you haven't had any responses. All our communities go through periods of great activity and periods of no activity. You've given us a great blog post so maybe the members who have viewed didn't feel there was anything they could add.

We also say here 'to get support, give support' so maybe when you next look in, and we hope you do, you'd like to offer your comments on someone elses thread to encourage the discussion. JulesG