Familial ALS, am I next?

[torteeya]

My mother died of ALS 11 years ago. She was told then that she did not have FALS, since there is no other history in our family. 2 months ago my sister was diagnosed with ALS. I’m still in shock and can’t believe this is happening to our family again.

Two days after I found out about my sisters diagnosis, I began to think about me and could I be next. This is when my issues started. I started out with sleepless nights and leg twitches. Over the last two months I had pain off and on in my hands and feet, shore shoulder, and minor calf cramps. I kept telling myself over and over that it is anxiety. I read the stickies several times to reassure myself and hope this would all pass.

I saw my doctor 3 weeks ago. He tested my strength and reflexes and said they were normal, which made me feel much better about my situation. At this point, I decided I was going to do things to help with my anxiety – I drink more water, ride my bike, and eat better. I take krill oil and magnesium daily. I slowly began to feel better.

Fast forward to today. The twitching has reduced significantly, though now I have them in my right eye. My legs now cramp every night, they are not toe curling charley horses, just tightness and minor pain usually in my thigh. As I’m typing this now, my right leg is cramped. I take motrin almost every night to help with the pain and allow me to sleep. I also sense fatigue in my right shoulder when I do anything with my right hand.

The nightly cramps and fatigue are what’s scaring me, should they? I know most of my symptoms could be from anxiety, but what about nightly leg cramps? I can’t help but think this could be the beginning of ALS.

I appreciate any advice you can give me. Thank you in advance.

 

[Nikki J]

I am sorry FALS is horrible. Your symptoms Could certainly be stress related and your normal exam is reassuring. The timing also is suspicious for a stress reaction. Your risk of carrying your family's defective gene is 50 percent so you are just as likely never going to have to deal with it as to face it in the future.

You need to consider how you are going to deal with uncertainty. Your sister has the option to be gene tested. I hope she chooses to as it gives you choices. With an identified gene you could decide to test even though you are asymptomatic. A negative test would be wonderful. A positive test would give you the chance to fight by participating in genetic research. That is the road I chose and I never regretted it. It is not everyone's choice so should be considered very very carefully as once you know it is forever

 

[torteeya]

Thank you for your reply. I'm going to talk to my sister about genetic testing. I think I would rather know than live my life wondering endlessly.

Should I be concerned about my nightly camps and shoulder fatigue? My PCP said he would refer me to a neurologist if I wanted him to, but I said I would wait and see.

 

[Nikki J]

You had normal strength I think on exam? Re cramps. I have not had a lot of cramping fortunately but until I lost most ofcalf muscle strength they were true cramps - the ones that make you want to yell! Also weakness was first- significantly before cramps. btw the eye twitches are even less significant than other kinds I am told

Perhaps see how it goes and follow up with your pcp if needed?