Nolesac
Active member
- Joined
- Jan 11, 2016
- Messages
- 44
- Reason
- PALS
- Diagnosis
- 12/2015
- Country
- US
- State
- Florida
- City
- Jacksonville
Good afternoon everyone,
I was diagnosed by ALS specialist at Mayo Clinic here in Jacksonville just after Xmas, I have limb onset ALS. I am 28 years old and have no family history, although my grandma did have dementia unkown if it was FTD or not.
Symptoms started around 7-8 months ago or atleast that is when i noticed the considerable weakness in my wrist, i play a lot of golf and hockey is how i noticed the wrist and grip issues in my dominant arm. Luckily your dominant arm has less importance in golf so i can still play effectively, hockey not so much.
So far the arm is still the only area affected, although the fascinations seem to have spread a little bit could be due to the enormous weight of stress this process has on me.
My Diagnosis only took around 3 months but included 3 MRIs, xrays, loads of blood work, lumbar puncture, and a couple NCS/EMGs.
I am not particular happy to be talking with you lot, but grateful that there is a place i can talk to someone. I dont really talk about my issues with anyone i like everyone around me to not be sad all the time which news of this would certainly cause. I havent even really talked to my GF about this which i know i need to do. Any suggestions on telling everyone would be great.
i should say that Mayo was my 2nd opinion, my first from St Vincents Neuro muscular specialist was MMN due to family history of auto immune disease, age, minimal signs of upper (brisk reflexes only). No conduction block found but apparently that is not abnormal for MMN. I am attempting to have IVIG to rule out MMN, hopefully not rule it out but you get what i mean.
Thank you all already very helpful over on the other board.
I was diagnosed by ALS specialist at Mayo Clinic here in Jacksonville just after Xmas, I have limb onset ALS. I am 28 years old and have no family history, although my grandma did have dementia unkown if it was FTD or not.
Symptoms started around 7-8 months ago or atleast that is when i noticed the considerable weakness in my wrist, i play a lot of golf and hockey is how i noticed the wrist and grip issues in my dominant arm. Luckily your dominant arm has less importance in golf so i can still play effectively, hockey not so much.
So far the arm is still the only area affected, although the fascinations seem to have spread a little bit could be due to the enormous weight of stress this process has on me.
My Diagnosis only took around 3 months but included 3 MRIs, xrays, loads of blood work, lumbar puncture, and a couple NCS/EMGs.
I am not particular happy to be talking with you lot, but grateful that there is a place i can talk to someone. I dont really talk about my issues with anyone i like everyone around me to not be sad all the time which news of this would certainly cause. I havent even really talked to my GF about this which i know i need to do. Any suggestions on telling everyone would be great.
i should say that Mayo was my 2nd opinion, my first from St Vincents Neuro muscular specialist was MMN due to family history of auto immune disease, age, minimal signs of upper (brisk reflexes only). No conduction block found but apparently that is not abnormal for MMN. I am attempting to have IVIG to rule out MMN, hopefully not rule it out but you get what i mean.
Thank you all already very helpful over on the other board.