edwards5257
Distinguished member
- Joined
- Jul 16, 2012
- Messages
- 160
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- KY
- City
- Paducah
I am a 59 year old male. I have weakness in whole body, twitches all the time and weakness in neck and mouth and tongue and face area. Have been seen by one neurologist who I liked and i had thought I wouldn't go further. Also hosp in May. EMG was clean he said, MRI's of brain and spine, MRA, tons of blood work, EEG, thorough neuro exam. I trust neuro but he said he thought it was all anxiety-maybe so. But he said he would give me another referral to an ALS/neuro muscular specialist in St. Louis at Wash U. Going 07/26/12 for this appointment. I also am going to Portland, OR with a friend for 9 days prior to the appmt. Hoping I can make this trip ok also. Top ALS/neuro specialist the website says is who my appmt is with. I have feared ALS from the beginning in Feb. I have had mild symptoms for "years" but nothing this severe. I feel so weak all over, so very weak. I still drive and type and eat but I can tell things are NOT right with my body. Neuro locally says NO ALS of which I am thankful. But even my fingers are weak. Any thoughts. I am a church pianist, mainly organist. I am still playing the instrument but it is with much difficulty each Sunday. I have a year old grandson that I would like to be involved with some more than I am. Oh, and my muscles feel so "tired" after use. My body feels tired so much of the time also. I feel best (if you want to call it that) when I do nothing! Sad to say. I need to try and accept the 2nd referral diagnosis if at all possible, since I have met my ins. deductible for the year. My sister doesn't know why I cannot accept the initial diagnosis of nothing wrong.
My local GP said he thought the only thing that they might do in SL would be to do a muscle biopsy. Any thoughts?
My local GP said he thought the only thing that they might do in SL would be to do a muscle biopsy. Any thoughts?