Hi there, I'm J, 28yr old mother, and I'm just jumping in because I'm not shy!
I've been lurking quite a bit, though.

I could write a book about my years and years seeking an answer to my strange problems.
What's been confirmed?
- Narcolepsy, but basically severe CNS hypersomnia with most of the typical Narcolepsy hallmark symptoms.
- Charcot-Marie-Tooth disease, diagnosed one week ago, and it seems to make sense even though I don't seem to have family history, my mom's side is dwindling since only four people are still alive on that side.

Starting July 09, I woke up with a drop left wrist with numbness. Went to ER. They treated me as if they thought I either had a stroke or MS. MRI done in ER was negative. Sent to neuro for EMG/NCV. At follow up, he told me I regained 90% strength. See ya. It fixed itself.

Beginning in September, I got attacked in the arms. severe pain and horrible feelings, like someone was wrapping my fingers in rubber bands. It would stop when I'd spread my fingers apart as far as they could go.
-October, I noticed a patch of numbness in my left shin. Dragging my leg around when I walked was noticed at a wedding I attended - I couldn't dance because I couldn't lift my leg enough for that much mobility.

In late January, I took a downturn for the worse. Dropping things. Tremor. Difficulty with doorknobs, jars, etc., within weeks I saw my left hand turn into clawing pinky and ring fingers typical of (thanks to google) severe ulnar neuropathy with muscle wasting. I got my butt to a new neurologist.

He was baffled. Gave me Lyrica for pain which has helped immensely, even though the weight gain sucked and I was in the hospital for peripheral pitting edema. I just need to drink more water and reduce sodium, I guess.

The NCV/EMG confirmed my suspected ulnar neuropathy but noticed bilaral carpel tunnel I had no idea about.

I have a two-year-old son, and a stay-at-home mom. I wanted my arms working again. I thought surgery would fix it, but then, at another visit, he told me it never will. I was devastated.

Fast-forward to March: Increasing muscle atrophy in my arms and my hands are both not unrecognizable to myself. While standing and talking to my husband, the top of my right arm began to have the familiar tingling, and then went completely numb in minutes! I didn't call the doctor yet. It wasn't in pain.

A couple weeks later, I woke up with a foot drop. goodness, I'm so scared to go to bed anymore because when I wake up something seems to go numb on me.
This time, I went to the neuro. The foot drop has been around since right before Easter. He thought HNPP until he saw the results of my leg MRI and NCV/EMG. He came in the room, said, "We have a problem" after using a marker to draw two X's - one on the outer side by my knee, and one by my ankle.

"Your genes are activated," he said. He told me he's convinced I have CMT.

Here's my BIG question - isn't this progression pretty fast for CMT? I'm feeling tingles in my right leg, and have been for some time, and now they are getting worse and I really don't want that one to go, too.

The muscle wasting is beginning on the right side of my arm, too. That was fast.

I had a "body attack" yesterday and I didn't seem to get out of this one very well. I describe the body attack and my whole body stiffening up from pain. This is my first whole-body, actually, and it was proceeded by days of nausea, dizziness, stomach problems, flu-like ache, excess fatigue, headache. I was also hysterical.
Yesterday really scared me. I was incapacitated. I even had weird hearing, like it was coming out of a tin can. When I woke up this morning, the head pressure had turned into a dull ache, but I'm pooped.

I'm young, I'm scared, I'm relaxing today because of weakness and head pressure. I called my neurologist today, and he will see me Monday.

Is anyone familiar with CMT over here? I know you are not doctors and I'm not trying to diagnose myself, but appreciate experience and wisdom.

Thanks