Symptoms and health anxiety.

[Cill87]

Hi everyone. I have had weird symptoms for a couple of months now.
I'm 36 with 4 kids at home. My husband and I work in the ranching industry and love riding horses.
I started working out in February and ended up pulling a muscle. I rested it for a while and then got back to it. I do have four herniated discs from a car accident, which has caused nerve pain since I was 19. All of a sudden I had numbness/tingling/nerve pain in both hands and now my left leg - intermittently.
My mom was diagnosed with ALS in September of 2020 and passed away two years later. We later found out it was FALS, although we had no known history of it. Her brother was just recently diagnosed.
Since then, I have had the worst health anxiety.
I have been having random muscle twitching - it's not localized to any area, just all over sporadically throughout the day. My nondominant knee was twitching quite a bit and it has buckled under me a few times. I noticed that there was less muscle on the inside of my left knee than my right. I'm also experiencing joint pain, and a lot of muscle soreness.
I can go over it a million times in my head - there are logical explanations for all of my health concerns that aren't related to ALS, but I am TERRIFIED of leaving my kids and husband early. I don't want to be cheated out of a long life and feel that I have too much to left to do.
The anxiety is keeping me from enjoying my life and doing the things I love. I need to see a therapist, I know. I guess Im looking for help/support through this forum. TIA

 

[Nikki J]

First I am sorry about your mother and your uncle

Secondly if you are worried about your health see a doctor

It really doesn’t sound like ALS. It is common and normal for ALS survivors to worry ,even those who are not FALS.

Do you know your family mutation? Is it C9 ? Aside from anything else you are young for c9 onset - not impossibly so but add that to your not very suspicious symptoms

Do you, your siblings or cousins have interest in helping ALS research? There are studies for carriers and potential carriers ( children or siblings of a person with FALS). You can be tested or participate without knowing your status. There is also a big study of PALS and carriers starting later this year. Currently there is a prevention trial for carriers of some sod1 variants. I have also heard rumors of some prevention trial for c9 in the future though since there is no gene specific drug not sure how it would be structured.

There is much hope for the future

 

[Cill87]

It is the C9 mutation. I know there is hope for the future... I'm a very anxiety ridden person anyway and have always struggled with health anxiety. I plan to get tested because I am a person that would do better knowing. I'd rather not spend my life on the computer going down the rabbit hole if I don't carry it. Every weird thing that goes on with my body freaks me out right now.

 

[Nikki J]

Testing is a personal decision. I tested and was gladI did. Participating in research helped me as I was doing something not just waiting for symptoms. It is important that you get any life or disability insurance set before starting a testing journey. And see a genetic counselor before and after.

As I said the studies would test you but you would have to commit to participating

I note that you and your husband are in ranching. If it is your own business make sure you are being paid separately and contributing to social security. If the worst happens you need to be eligible for ssdi and medicare. We had a couple who ran a business and didn’t do this. The wife got ALS and couldn’t get ssdi. My sister was a sahm and didn’t have current work credits

 

[Cill87]

Do you know how fast ALS can affect speech? I've recently noticing that I'm having a hard time transitioning from certain sounds to other (th to do sound). I am so worried about developing AlS. I know anxiety can have an impact too... but I guess it could have been something I've done all along and I'm just noticing it because I'm paranoid.

 

[lgelb]

If no one else notices speech changes, in all likelihood they are not suggestive of a CNS disorder. The kind of "switch" you mention can be affected by fatigue, dry mouth, allergies, and stress.

You are understandably fearful of ALS. Considering trial participation and advance planning such as Nikki suggested, coupled with counseling, might reduce your fears' effect on what sounds like a great life and family.