MS and ALS connection?

[juliasfo]

Hi everyone,

I have been diagnosed with multiple sclerosis (MS). However, along with sensory symptoms attributable to my MS, I also experience a lot of muscle twitching. I've read the sticky, am aware that muscle twitching is not diagnostic of ALS, and that I don't seem to have any of the other characteristic symptoms. However, is there any information/data out there suggesting that those with MS are more predisposed to also develop ALS? I found a few accounts of people who suffer from both on the Internet, but not a lot of data as to a connection or correlation.

Any ideas/thoughts? Thank you very much for your time.

 

[KarenNWendyn]

I don’t think there’s a correlation. They have very different disease mechanisms.

 

[Nikki J]

I think generally no is the answer. There was a study that looked at MS and ALS and people who were initially diagnosed with MS and got ALS. 7 people were in that very unlucky group with both. 5 of them turned out to have an identified genetic mutation for ALS When they looked at the people who “ only” had MS none of them had the ALS mutation.

I think the takeaway was that the mutation had nothing to do with the MS and these people who were already destined for ALS were just very unlucky to coincidentally get MS too.

I am sorry you have MS

 

[juliasfo]

Thank you so much for the information and taking the time to respond. What you said is exactly consistent with what I was able to find as a layperson.

I have no known cases of ALS in my family, and no symptoms other than twitching that comes and goes throughout different parts of the body. So from everything I read in the sticky, highly unlikely to be related to ALS. I read on the MS forums that several people there experience twitching, but it is not specifically recognized as a MS symptom per my MS specialist neuro at UCSF. I strongly suspect mine is anxiety driven over health concerns, so I guess in that sense it can be a secondary MS symptom of sorts ��

Nikki, thanks for the sympathy. I count myself fortunate bc other than some initial vision issues in one eye that completely resolved, I only have sensory symptoms (tingling and some numbness) so far, no motor issues, and my neuro says it is a pretty mild onset and should respond well to control with disease modifying drugs and healthy lifestyle. It is of course an unpredictable disease and I’m still coming to terms with the diagnosis, but it is nothing compared to what you guys have to deal with. Bottom line, it is not terminal and many manage it well and live a good life.

Anyway, thanks again for your responses and kind words.

 

[KimT]

Take a look at the Terry Wahls protocol. She is an MD who has progressive MS. She went from severe disability/wheelchair to riding her bike 20 miles each day. Her protocol is diet-based and healthy. I've known other people with MS who have had success with her protocol. Her book is on Amazon and definitely worth the read.

 

[juliasfo]

Take a look at the Terry Wahls protocol. She is an MD who has progressive MS. She went from severe disability/wheelchair to riding her bike 20 miles each day. Her protocol is diet-based and healthy. I've known other people with MS who have had success with her protocol. Her book is on Amazon and definitely worth the read.

Thanks so much, Kim. I've seen in other posts that you've had a lot of other family members or friends with autoimmune conditions, so really appreciate your suggestion. I'm very much in the process of researching diets, etc. I've asked my MS specialist neurologist at UCSF, who is very well respected, but it seems like a lot of neurologists don't really emphasize the nutritional aspects much. So I'm looking into it myself more.

In any event, thanks much and I wish you the very best.