- May 19, 2022
Hi all. I've been having some symptoms since 9/2021. They are progressively gotten worse and I'm currently having issues going up stairs. I would say things are early though for sure since I'm still able to walk relatively well. I'm not new to ALS, as my father was diagnosed in 2/2017 and passed in 7/2017 from Bulbar onset. I was his sole caregiver during that time, so I'm aware of what to expect, etc. Just wanted a place to vent I guess - stumbled upon these forums.
- Father diagnosed with ALS 2/2017 and passed in 7/2017 from it (Bulbar onset - 53 y/o)
- I am currently 38 y/o
- I started having twitching in my legs in 9/2021. Was mild at first. Continued to what I have today, which is 24/7 twitching and muscle atrophy. I now have some issues going up stairs, but am still rather ambulatory without issues other than needing to support myself going up stairs as my left leg is weak.
- I saw a neurologist yesterday (5/18/2022) finally, and after my visit and some tests he did in the office, he feels I do have MND.
- EMG is scheduled for 5/25/2022 to confirm MND.
- As it stands now, it won't be ALS since it is only my left leg is mainly effected. Based on current twitching, etc. he is rather confident it will be ALS. (I have twitching in other leg, arms, stomach, and face occasionally now too).
- I do also have a secondary appointment for a second opinion scheduled on 6/2/2022 as well.
- We are planning to test for familial ALS gene on 6/25/2022 as well (we were trying to have a kid) - those plans may go on hold though