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suzannj

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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
 

wright

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Hello Suzann

Sorry you have to be here and sorry you are so upset. It sure sounds like you've been hit hard and hit suddenly. That really isn't typical of ALS; ALS tends to sneak-up on you and that isn't exactly what has happened to you. The other thing that points away from ALS is your sensory symptoms in your legs. There is a small percentage of PALS that experience sensory-type symptoms, but it isn't common.
Typically when something comes on that quickly, it's viral or post-viral autoimmune in nature. Your symptoms could also be due to about a gazillion things, almost all of which are completely treatable.
The blood tests you are being given might point your physician in the right direction, but sometimes that isn't always the case. If you're that worried about ALS, have your GP refer you to an ALS specialist or at the very least, a neuromuscular specialist. They will do the appropriate tests to determine what you have.
Right now, I wouldn't be worrying about ALS at all.
 

awieleba

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suzann

Hi
I feel your pain/anxiety. I dont have alot answers, i dont even have diagnosed. I am just trying to figure out my own mess.

I am a young mother also, the fear of not being there can be overwhelming. It was much worse in the begining and after a few months have calmed-a bit.

are you having twitching with cramps? I have twitching with out cramps. but my limbs will somtimes slightly move or jerk on there own.(like when you fall asleep but awake)
my sister has been having horrible cramps all over her body whenever she moves with a sudden movement. she has no weakness and als is not even on the radar for her.

I know what you mean about arms getting tired. I have a hard time with my 8 month old. I had to buy a hip hammock becuase i am unwilling not to carry her around. Its strange for me to have that, I am known for over holding all 3 kids. I would cook and hold my other babies--not even a possibilty these days with the new one.

I dont know about your insurance, but i would go right to a neuromuscular dr. It may be over kill, but I personally am a impatient person that is fast paced and I dont like messing around with one doc to be sent to anther. You are having muscle problems and why not go to someone who see's all kinds of things (not just als). I am sure that alot of people would disagree with me, but I went to a local neuro first. They just send you to a specialist anyway. I have 3 kids and I dont have time to waste dragging them all around.
I feel good being with my specialist. She is also running all the blood work that a gp would.

well, just wanted to reply. gotto go take the kids to the pool. This will be a huge physical event for me but worth it. and my mom will help me.

take care and good luck. keep me posted.

april
 

suzannj

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Wright,
From reading many posts on this site, I was hoping you would reply to my message. As corny as it sounds, I clung to your words today....especially your last sentance of course. I must have read your response 15 times throughout the day. My blood test results will be in tomorrow, after hearing the results I am going to give your suggestions to my doctor. After learing more about ALS than I ever thought I would, I cannot believe in "this day and age" there is not a solitary and definitive diagnostic test. Whatever my outcome, I will be a lifelong ALS advocate. Thank you for replying, it means a lot that you take the time to read, evaluate, and give sincere replies to folks you don't even know. You are providing a great service.
- Suzann
 

suzannj

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April,
Thank you for replying as well. As I'm sitting here, muscles in my left leg, side, and arm are all spasming, and my left calf is so tender from cramping. I'm not hysterical like I was last night, I have been praying day and night over this. I just laid on the couch with my baby for the past two hours while he was sleeping....I just didn't want to put him to bed and prayed again that I will be here and be well enough to raise him and care for him. Those thoughts are what tear my heart out the most (as I'm sure you can relate 100%), and of course also the cruel, inhumane, and horrifying effects ALS ravages on its victims. I agree with you (and Wright), when I speak with my GP tomorrow and get my blood test results, depending upon what they say I plan to ask him to immediately refer me to either an ALS Specialist or directly to a neuromuscular doctor. I hope you're having a restful night, and that it wasn't too draining to take your children for a fun day at the pool. Thank you again, and I will indeed keep you posted.
 

fiddleplayer51

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Hello Suzann,
Welcome to the forum. It sounds as if you've gotten some good advice from others.
I just want you to know that I'm so sorry you are experiencing such troubling symptoms and are having all your energy drained by worry. You are in my thoughts and I will be thinking of you tomorrow when you visit your GP. Be insistent that you see a neuromuscular doctor or ALS specialist. You need to feel as if everything is being addressed by someone whose expertise you can have faith in.
Please let us know what you find out and keep us posted about any further developments.
I hope you can rest well tonight and enjoy waking up to your little one.
Peace to you, Suzann, and all the best,
Jane
 

suzannj

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Hi Everyone,
Just thought I'd give a quick update, and I do also still have a lingering question about muscle spasms . . .

All of my bloodwork came back "normal" - usually a good thing but I was so hoping that the magnesium would be low. I was on the phone w/my doc, he gave the results & went to end the call. Longer story short, I told him I was still extremely worried about ALS, and he said not to be, that he'd see me again in a month, to have a nice day....and essentially hung up on me! Unreal! Good & bad I guess, oddly it made me feel better that obviously his gut is not saying ALS as he blew me off so quickly, but obviously bad that he was so incredibly abrupt. (As I'm typing BOTH of my lower legs and left thigh are twitching and last night my left thumb was actually twitching so bad that it was moving itself and I couldn't take out my contact lenses with that hand!) This is NOT normal!

Thus my question: With ALS, I know there seems to be no real "typical progression", but:
1) Does or can it begin with twitching alone as a first symptom?; and
2) Are ALS related spams isolated only to the currently effected muscle group? (i.e. Can I be at all comforted by the fact that mine are appearing almost everywhere?);
3) With ALS related spasms, woudl all of the muscles that are twitching also be cramping?

April - I have to say I laughed a bit at your great curiousity about hammertoes on the other string! LOL I was also thinking about your comment that in the past people have said you hold your kids/babies too much. What in the heck? I personally disagree.....babies / kids love their mommies, and thus love to be close to Mommy, and LOVE to be held. Who can say what is "too much"? If they wanted to get down, they would certainly let you know, and we all know that the day will come VERY fast when they're suddenly pre-teens and want nothing to do with you! LOL I say, hold 'em as along you possibly can and enjoy every single second of it :)
 

wright

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Hello again Suzann

1) Yes, ALS can begin with twitching, but according to the literature, less than 10% of PALS begin that way. I'm not sure of the percentage on this forum, but my guess would be that it is similar.

2) To have spasms on such a global scale and to spread so quickly (in a matter of a month or two) is not typical of ALS. This, once again, is according to the literature. I have read and have been told by two neuros and people on this forum, that ALS is something that typically sneaks-up on you; initially it is so insidious that you don't realize anything is wrong.

3) Not all of the twitching muscles necessarily have to spasm.

I really think you're jumping the gun on thinking you have ALS. So many things can mimick the symptoms . . . and again . . . your symptoms came-on so fast, which should give you some solace. You could have something as simple as BFS or possibly some type of peripheral neuropathy or any number of things that will allow you a full recovery.

Ask your GP to refer you to a neuro that specializes in neuromuscular disorders for your peace of mind.

Keep us informed.
 

patricia1

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Hi I AM NOT A doctor but from my own experience I would say to look into this being a back problem. You are now carrying a one year old and a car carrier.It could very well be from that. See a neuro,or even a phyical therapist. This does not sund like ALS.


Good Luck Pat
 

awieleba

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you are right, you cant hold those babies too much! I will cuddle them untill they tell me to stop!
 

Shane the Pain

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R u Ok ?

Suzann, don't give up girl ! i'd like to hear how you're doing ?
Shane



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
 

SMillheiser

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Suzann,

I have a foundation called The ALS Guardian Angels. We are bringing a neurologist on board to answer questions like yours. If you'd like to send me an email, I can go over it with him and get back to you. Please send it to [email protected] .com. Feel free to call us at (949)488-9894.

There are so many other things your symptoms mimic. The odds are it is not ALS.

Stu Millheiser
 

suzannj

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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 . . .
 

suzannj

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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 . . .
 

patricia1

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Susanne
I will still get a MRI of my back That chiroprator was way off telling you that .He is a want a be doctor Those guy annoy me when they say stuff like that.
It can be as simple as throid, low Potassium, magnisum, hormonal something quite simple to fix.
You need to see Your family MD who will refer you to the right test and specialist.


Relax for now if you can and make an appointment


PaT 1
 
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