Terrified Mommy of 1 year old

[awieleba]

suzann

Hi there again!

I just wanted to tell you that my sister has been having AWFUL cramping! Anytime she moves a certain way her body cramps or even sends a text on her phone her hand cramps. she has no weakness but aches after. I did not even know she had this untill Iwas worried with my twitching and weakness and I asked her if she ever got twitching. She said she did a little but had been cramping for months! she finally went to a doc. my point is that she is not even on the radar of als. I will let you know if and what they find for her cramping. she is 39.

I know it is hard (trust me) but just go about one day at a time. When I was with my kids I always would get sad thinking abuot the future. I dont do it anymore. Even today watching my kids play in the pool, I was just happy that I had today.

Take care of yourself

appril

 

[Shane the Pain]

Yo Baby Yo

Dear Suzann:

take a look at this, and while you may not have a clue, find someone in your life who does.
[]
i wrote you this long response that took me an hour 2 type cause i stand & use my little finger on either one hand or the other, i tried to save the message & failed, oh well. i wrote you about some of my fun the last 4 years,
that i'm married / 4 kids and hate what's happening. you have to be our own advocate, you
love your baby so don't give up.

Patricia: Thank you for posting. As the matter of fact I do indeed have low back problems, so that is an excellent assumption. My only big doubt, is that I've had low back problems since I was 20 or so, and am now 37 and this just started. I did see my chiropractor this week. He took my concerns very seriously, and to my horror said, "Well, you're at the right age for either MS or a somewhat early onset of ALS....but I'm sure you're fine." He did an adjustment, and (hoping this is a good sign) the fasciculations were going off like fireworks all over my body about 20 minutes later.

Shane: Thank you for asking. I've been okay the past few days, but today I'm very frightenend again. Lots of fasciculations, and last night my right calve (calf? I never know if that's correct . . . ) and into my foot was cramping so much it kept me awake. Today my leg muscle feels bruised inside and like jello. I HATE that this is happening to me and that I'm so afraid and thinking of this throughout the day. And yourself?

Stu: Thank you. I will indeed send you an e-mail.

All: Today I Googled "Fasciculations + Leg cramps" and came across many hits for something called "Cramp-Fasciculation Syndrome". It seems to be at least somewhat akin to Benign Fasciculation Syndrome. With the leg cramps I've been having, I am hanging on (somewhat desperately today) to the thought that perhaps this is my problem and not ALS. God please not ALS . . . don't take me from my baby before he's grown . . .

 

[Al]

OK Shane, you were doing fine until you posted a link selling potions and supplements. We do not allow that kind of advertising here. There are other sites that love that crap. Do a search, they are further down the list. We're on top because we are honest and above board and we care here.

AL.

 

[Shane the Pain]

Attn: Al

Dear Al:

ok to block the web address, the point is this; i have learned more on my own, thru friends and family, WAY more helpful than anything i've learned from the ALS local clinic. i have a friend, he's one of my old tennis buddies, hurts to even think of those days just some 4 years ago, anyway, he's a scientist, he understands chemical reactions, he, Richard Rouse, is helping me search 4 supplements that will aid us. he/we have come across a few things that cd help many. i want to submit the data 4 review, i am NOT selling anything, except School Uniforms at:]... i want us to share the info on products that help us and people give their feedback. fyi: i am getting assigned a UCSD Intern who will be helping me with this same idea and storing data.. i don't know how to post and Al, i don't know how to respond to you directly. Hi Suzann !

Hi Everyone,
I am physically sick at the the thought that I may actually have ALS. I feel like I'm living in a fog, and the more I read about ALS the more I see myself, and the more terrified I become. I am only 37 years old. My beautiful baby is only ONE, the thought of leaving him or of becoming so disabled is the most horrible thing I can ever imagine. If anyone out there would take the time to read my "symptoms" and tell me what you think I would greatly appreciate any feedback. Thank you in advance.

* I started having muscle spasms about 2 months ago. Started in my right calf and lasted for 3 days almost non-stop. Fast forward, and now they have moved almost everywhere. A different spot everyday, and sometimes multiple times a day in different areas on and off.
* Also about 3 months ago I started feeling like my lower legs were mildly falling asleep, kind-of numbish with some pins & needles sensations.
* Mild cramping in both calves and back of left thigh began about a week ago. Today my right lower leg is actually sore from the cramping.
* Slightly raspy voice on and off, and this annoying clear-my-throat-mild-cough thing also began just about a week ago.

1) If this is ALS would the muscle spasms/cramping be isolated to one area only?
2) How fast would symtoms progress? Is the above timeline too quick to be ALS?
3) Do the spasms and cramps come together? (i.e. If my upper arm is twitching and this were indeed ALS would I also have cramping in that part of my arm?)
4) How soon would feelings of weakness begin? And would it be in the muscles that have already been cramping and spasming?
.......just one more question
5) Can someone describe what the weakness / atrophy associated with ALS feels like? Is it unmistakable? For example, I was carrying my son on my hip today as usual and I just felt like I HAD to put him down or risk dropping him because my left arm felt SO fatigued, and that was only after 5 minutes or less which is unusual for me.

Thus far I feel I have not lost any fine motor control in my hands, no tripping over things or troubles walking.

ANY feedback would be so appreciated. I can't stop crying right now and feel so incredibly desperate. I just went to my GP, and we've only started with some basic blood tests including magnesium levels.
What a horrific thing this is for anyone to deal with, I don't know how any person handles hearing this diagnosis.
Thank you,
Suzann

 

[Al]

Ok Shane, here's how it works. If you click on my name Al on my posts you get a drop down menu and you can send me a private message. You can send me or Cindy a message that way. I removed your blazer link because we don't allow adverts for non ALS products etc. on this site. We read every post and if someone, member or new member is trying to promote something far out or unproven we reserve the right to remove it. That's in the Big print in our policies which most marketers don't bother to read. If you come up with some combination of supplements that you can prove works, great, glad to hear it but if you think you'll blow smoke up my butt, you'll be out of here real quick. I hope we have an understanding. You may think this is harsh but you've been here a few weeks. I've been here 4 years. I have seniority. LOL.
AL.