- Mar 30, 2019
This is very helpful info, Nikki. Thanks so much.A few thoughts. A significant illness especially with weight loss will exacerbate symptoms. I had been very ill ( pneumonia) before my last clinic. Although my breathing was fine and I was recovered they felt some of the strength changes could be atrributed to that and might reverse a little. I can’t tell for sure but I wouldn’t be surprised if my next visit looks like a plateau (improvement from recovery balanced with progression from disease)
The first summer I had this things seemed to be progressing alarmingly and I expected a wheelchair by Thanksgiving. That changed after starting riluzole and the wheelchair has yet to be recommended or requested by me.
Riluzole also knocked out twitches for quite a long time. This happens for some PALS. I do twitch now but not badly.
It takes a couple of weeks usually to get over the shock but as you can see her many PALS live pretty full lives. The world doesn’t stop with a diagnosis nor should you
If your previous emg was not diagnostic I am really surprised Dr Pulley made a diagnosis without another one. My clinic is extremely strict about meeting the criteria from what I have been told
All I can say re: Dr. Pulley’s diagnosis is that after strength and reflex testing, and comparing it to the first visit, was that I am now in the clinically probable category, and that he felt strongly that I had ALS. He started me on rilozule, set up a clinic visit in two months, and gave the letter saying I had ALS for social security. After the last EMG and the pain from the hematoma, I certainly didn’t push him for another one.