Worried about 48 year old M

[YusufKaraman]

My father is 48 years old, a computer engineer, he says it started with muscle tremors in his right leg in May 2024, he has foot drop syndrome as of March 2025, he can still drive, but his calf muscles have weakened considerably, there are no symptoms seen in any part of the body yet. The doctor diagnosed ALS from the EMG MEP results, but he also asked for a blood test and a MRI scan. We started the Rilutek drug and started fitness with light weights. This rate of progress seemed quite slow to us, and that's why we still believe that it is not ALS. Is there anyone who has experienced a similar situation? What do you think is the disease? Emg MEP test

 

[lgelb]

Since reportedly one of ten PALS lives ten years or more, you can see that some people do fortunately progress slowly. So you cannot use the rate of progression you describe as a reason to question the diagnosis. However, if he did not have a second opinion or receive the diagnosis at a major center, that can still happen if you are concerned.

I would make sure the weights and any other exercise are reviewed by a physio or neurologist or rehab specialist familiar with neuromuscular disease as exercise to exhaustion can speed up the disease.

 

[Eliza B]

Hello,
My symptoms started almost 3 years ago with drop foot. I was a strong walker and played golf, over the next few years my ability to walk got slower and I could walk small distances only. For the first 2 years I was in denial and looking for an alternatives diagnosis. I broke my ankle a year ago from a fall, since then I have not been able to exercise my legs well, as I fell a few times whilst trying to walk again. I am now using a wheel chair and my legs have weakened more. They call is slow progressive lumbar ALS.

 

[YusufKaraman]

Hi Eliza thank you for your share, can I ask what was your age when they diagnosed, my Father has drop food and can walk short distances, do you have any advice for this period. I wish you good health

 

[annlee]

Yes, it is possible to have ALS and to have slow progression. Just a word of advice- denial or not, your father needs to get an AFO for the foot drop now. His doctor can set this up. He needs to wear it daily. If needed, try one from Amazon while waiting to have one made. Your father must avoid falling from the foot drop and it WILL happen! A significant injury can change everything, and not for better. I am also slow progression ALS, with 5 years under my belt. First symptoms were spasms and muscle tightness in the one leg, then the other leg, and foot drop in the other foot, followed by problems rolling over in bed and lifting my butt off the bed. Make adjustments, and there will be many, as you see needs beginning to change. It's important to stay one step ahead. I am now wheelchair dependent, (as of 15 months ago), but still live independently in my own home, without outside help, other than the yard. It is still possible to enjoy life with this disease, especially for those of us that have been fortunate enough to have a slower progression. Good luck to you and your father.