Hello crystalkk...
Nice to meet you. Lets see where to start. About 5 years back I started with major balance issue, and I felt like both my legs had severe bone pain in the front of my calves.
I had an uncle who died of bone cancer so I thought I should check myself out. I had a bone scan and every thing was fine. At the same time I was getting very bad muscle spasms in my feet....all I needed to do was stretch them and they came on. I was really tired.
That went on for a while and I had no muscles moving and I had no thought process about 'ALS' what so ever. One day while taking a drive with my husband, I was resting my elbow on the passenger door. When I looked at my elbow it was all sunk in. I still had not noticed any muscle movement, but became worried as to what it was.
Still I ignored it...we were moving. I was having some trouble going walking for a long distance. My legs (both) got tired. I had trouble holding my pocket book without fatiguing
that arm. My hands started to get stiff, but I have arthritis in my wrists.
Then I have a series of small strokes. I couldn't stand up....even though doctors thought I should be able to. I showed them the atrophy of elbow, they asked about family history, and told them that there was 'ALS'. That's when they did the first muscle biopsy, but it showed myopathy, so they did another looking for ALS. Then the denervation showed (acute and chronic) then 'EMG' but only one other part showed acute and chronic denervation.
Shortly after, the muscles started to move in certain locations. Not all over. They actually found the denervation before I had any fasciculation. Now the muscle moves frequently. Those areas have 'thinned', that is what the neuro has said.
My left hand has perpetual fasciculation beneath the thumb and pinky and center of palm. It is a quiet movement. I just know it's there. The side of that hand (pinky side) has sunk in with in the month. Now I feel the same thing in the underside of the wrist, around my mouth, twice in the tongue.
It is upsetting me....but I am trying not to become a basket case until (or hopefully not ever) they figure it out.
Last NCS was normal. I just saw a spine doctor to rule out anything in the spine to be a cause of this situation.
Yes...I have brisk reflexes and when the toes spread and go up? I forget what you call that.
Well...I have confused the doctor's. We will see. It's been a long wait. I will wait until I get my answer. God knows. When He wants to tell me He will.
One more thing...once in a while I chock...did I spell that right? And I wake up not breathing. Just with my mouth opening and closing and nothing going in or out. maybe someone will understand that one.
Thanks for your concern
take care
lovelily