Hi Brian’s Mom,
(I sent a slightly different message to your Yahoo address, but just in case it didn't work I put it here too)
Your post really struck me for multiple reasons:
- I too am 38 years old
- I’m also a “Brian’s Mom”
- I too have been seen by two neuro’s who both said “No ALS”
- But . . . I also have a deep sickening fear that I have ALS and that is just too early in it’s development to be detected. (yes, yes, everyone I KNOW what most of you are thinking, that's why I sent it to her Yahoo address first
You can click on “suzannj” on the Forums and read some of my posts to get the full story if you like, but I started out about 6 months ago now with twitching (fasciculations) that quickly spread throughout my body and have not let up. My leg bothers me so badly sometimes that I limp when I walk, and an extremely disturbing new “symptom” is that my tongue and cheeks and throat feel very fatigued. It’s hard to explain, but I also have a sense that someone is choking me a little? While I’m eating, my tongue just feels exhausted . . . so of course I’m thinking “Now I’m going to present with bulbar symptoms?”
I can’t “talk” a lot right now because I’m at work, but I wanted to reach out and definitely tell you that you’re not alone, and there is definitely someone out there who is going through something very similar, and is also scared to death. Sometimes it hits me like a wave and I feel instantly sick to my stomach. I feel like a black cloud is following me around many times of the day . . . .and then . . .
At other moments I say (AND I SINCERELY HOPE YOU DO TOO),
“You know what? Today I am alive. Today I can take care of myself, my child, my home, I can go to work, and eat and walk, and LIVE. Today I DON’T have ALS because no one has told me I have it
, and that’s what I have to believe……and even IF I do have ALS there’s not a darn thing I can do about that, so today I’ll live and be happy.
And believe it or not there are indeed folks with ALS who are LIVING their lives, albeit differently than before diagnosis, and are NOT miserable 24/7. There's even a PAL on this very forum who just had a baby recently with his wife, and yes, he already knew he had ALS when they planned the addition to their family, because obviously he's not letting ALS ruin his entire existence, and he's certainly not thinking of taking his own life.
You really, really need to call your GP, or your employee assistance program, or a crises services if you don't have medical care. Get in TODAY. Explain your concerns, fears, and what you are thinking. You have to stop this very destructive ping-pong match in your head, please believe me, I know from experience. It is VERY hard when you are experiencing these "symptoms" and you don't know why, and then you look at your babies and feel like you're being crushed inside with sadness . . . . But why waste one more itty bitty second of your life consumed with a fear of something that no one has yet even said you have?
Another person on the Forum posted something once that really stuck with me. She said that her doctor once looked her square in the eyes and said, "You know what? None of us make it out of this alive. Not one of us." Not to make you more sad, but a local woman here, who was our age, and had two small kids, was just killed in a car accident on her way to work. But does that mean you're never going to drive again? You don't know if that's going to happen to you, you don't know if you'll die in an airplane crash, etc., etc., etc, and you DON'T KNOW YOU HAVE ALS EITHER. When your thoughts start taking control, say aloud if you have to: "STOP!" and then force yourself to think of something positive. Sounds corny, but I swear it works
Please get ahold of yourself, STOP, and call your doctor.
Hope that helps,