Fear of ALS has made me not enjoy life anymore.
I'm 29 and have had body-wide twitching, pins and needles, occasional muscle jerks, and sensory issues for two and a half years now, mainly in my legs. I finally went to the doctor a few months ago and was basically diagnosed with BFS, which is what I suspected for a long time. They suggested doing blood tests to rule out any vitamin deficiency and other issues, but I still haven't had any done. I actually put off going to the doctor for so long because I was so convinced I had ALS that I felt there was no point going to the doctor, since ALS is inevitably fatal. It didn't even really cross my mind that there could be something else going on that is treatable.
Although my concern isn't that I have ALS right now, what's exhausting is the anticipation of getting it someday. The issue is that I've done so much reading on ALS that I found out what risk factors are associated with ALS, and several of the possible risk factors seem relevant to me, to the point where I've altered my lifestyle to try to reduce my risk of getting ALS as much as possible. I won't list the risk factors here because I don't want to stress anyone out if they weren't aware of these risk factors and create the same issues for others as I'm experiencing. Fortunately, there isn't any familial ALS in my family.
I spend a lot of my time wondering if one or both of my feet will suddenly drop, or if I will be unable to pick up my coffee mug when I go to lift it, basically anticipating ALS symptoms to manifest at any point. I feel like my experience with BFS, combined with the amount of reading I've done about ALS, has essentially created a monster that is hard for me to fight. I'm 29 and feel like my life is essentially over.
Re: Fear of ALS has made me not enjoy life anymore.
Quote:
Originally Posted by
beq45
Although my concern isn't that I have ALS right now, what's exhausting is the anticipation of getting it someday. The issue is that I've done so much reading on ALS that I found out what risk factors are associated with ALS, and several of the possible risk factors seem relevant to me, to the point where I've altered my lifestyle to try to reduce my risk of getting ALS as much as possible. I won't list the risk factors here because I don't want to stress anyone out if they weren't aware of these risk factors and create the same issues for others as I'm experiencing. Fortunately, there isn't any familial ALS in my family.
Firstly, I have FMS (fibromyalgia) another condition of exclusion which is life affecting rather than life threatening so you have my empathy here..
My symptoms caused me to think I had MS (among other things) and, like you, I didn't figure on something like FMS!
Can you clarify who has diagnosed you? Is your GP or a neurologist?
I'd actually say it's a good idea to get the bloods done because a lot of vitamin or mineral deficiencies can cause muscle issues like these and it could be as simple as that! I'm surprised 'they' have diagnosed you without insisting on doing this to be honest?
What I'm seeing is that you don't have ALS and also having this syndrome (BFS) doesn't make you any more likely to develop ALS. Your risk is the same as anybody else, so forget that one!
Bottom line? You can focus on what's real and live your life, or you can imagine yourself a muscle disease and waste precious time that you won't ever get back?
ALS didn't create this monster; you did.
