Now what is going on with me?

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northerngirl

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I go for my EMGS on the 19th. My tongue is still weird but now I have a cold and my body the last 3 days is doing something new and weird. I feel little twings al over my body. There don't cramp, the don't viberate, it just feels like a tweak. I get one every little while, I am total freaked out over it of course so I obsesively pay attention. is this the fasciculations I have been hearing about?:cry:
 

northerngirl

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What does the muscle weakness and fasciculations feel like?

I guess what I need to know is everything I read in regards to ALS seems subjective and ambiguous. I read the words: muscle weakness, atrophy and fasciculations over and over again, but there is not a great deal in defining these terms.

Is the muscle weakeness such that the limbs are disabled? Is this a perceived weakness, how is this diagnosed?

With regards to fasciculations, what do the feel like? How would you describe them?
Are they localized to start?
 

brooksea

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No the limbs are not disabled all at once. The muscle atrophies/becomes weak and slowly but surely use of the appendage dwindles. The weakness can be measured by simple exam. The doc has you squeeze his/her hands or push this way and that with arms and legs. Fasciculations can be described as the muscle twitching exactly like when you get a "tic" on your eyelid. In my experience with my PALS, the twitching is localized and spreading on its merry way...
 

DMHltd

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I agree, there's a great deal of ambiguity in these terms. Have you read the sticky note at the top of the forum list about fasciculations? The fasciculations I get come in three flavors. One is a twitch of a muscle in the hand that causes the thumb or a finger to move back and forth. Another is a spot on the body that is like a slow or sometimes fast heartbeat where you can see the skin move up and down. The third is a quick one shot "poke" somewhere that is gone before you can see it. Since I've only felt them and not seen them I'm assuming they are just like the second type except single-fire. In ALS these twitches signal the dying of nerves. In other diseases they twitch but don't die. My fasciculations started on one hand and not hit just about every where except the tongue and private parts (so far).

Real Muscle weakness was described to me by a neurologist as when a muscle can no longer do what used to be able to do. For instance you can't pick something up that you should be able to pick up. In ALS this happens because the nerves no longer give the muscles the necessary signals to move. And after so long not moving the muscles wither away which is called atrophy.

Hope that's accurate and is of help to you.
 

northerngirl

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Mom has never had fasciculations, Yet her's started with her left arm, she could not move her ring or little finger, then up it travelled, then her right arm. now her legs and her speech. Me, It's my tongue, I read, (Ihave to laugh while I wright this one!) One of the tests is to see if you can still wistle! so yes in the middle of the night when I wake up you know what I try to do!, good thing my husband is hard of hearing and a deep sleeper! LOL! also they check if you can touch your back molers. Which I can do. I guess I will Know more on the 19th. I had the dr. check my thyroid, and my B12 because those are both sympyoms if there is a dificency. They both came back ok. The dr. put me on clozapane for my anxiety over this. Then I Googled (yes I google tooo Much!:-D) that some peaple get slured speech and musle twiches. So I stopped taking it, evern though I only take it at night. So needless to say I did not sleep. And am a total mess with anxiety again. Mom was officially diagnosed with als Tuesday. (no supprize). Hopefully all I have is stess.
 

wright

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Hello northerngirl

I can see how and why your symptoms would worry you . . . BUT . . . let's look at this thru a pure probabilty perspective. You said your mom was just diagnosed with ALS . . . a rare disease, with symptoms that are mimicked by many things. What do you think the chances are, that you have ALS at the same time your mom does? The chances must be astronomically small. I am going to assume that the condition of your mom has your very worried and anxious . . . is causing you to lose sleep and not eat. All of that is obviously going to cause all kinds of abnormalities in your body. I too am sleep deprived, not eating well, worrying, etc. I feel twice my age at the moment . . . and just six weeks ago . . . I felt half my age. There is definitely something wrong with me; something is causing me to denervate . . . but the time span for which it has happened and the sensory symptoms I am suffering . . . and I quote my neurologist and another neurologist friend of mine who used to practice at the John's Hopkins ALS clinic . . . "There is NO WAY you have ALS with your symptoms." But for some reason, my perception of things overrides the reality of the situation. Unfortunately, that is the way many of us think when it comes to things like this. I too am a worrier. I too am anxious about the possibility of having ALS, despite being told by two neurologists that I don't have it. I know exactly how you feel . . . and it is not a very pleasant place to be. What I tend to do, is focus on the symptoms that point to ALS . . . and I don't look at the other symptoms that point away from ALS. I am scheduled to see a third neurologist at Ohio State in about a month. If they tell me that I don't have it, then I will finally accept it . . . I hope. I think you need to step back and look at the whole picture and believe what your neuro tells you at your appointment. I wish you all the best.

P.S. Just as a note: even if I don't have ALS . . . I will not leave this forum. The people on here are beautiful and I will do all I can to help you all, just as you have all helped me through this most difficult time.
 

mamaoftwo

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Why does everyone keep saying ALS is rare?

It has roughly the same incidence as MS but we don't hear people describing that as a very rare disease. I have 3 friends with MS and know of 2 people that died from ALS (outside of this forum obviously). Just because ALS patients typically die within 3-5 yrs of diagnosis does not make it rare - sure it changes the stats as to how many people at any one time have the disease but it doesn't change the incidence.
 

northerngirl

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Your Wright!

Thank you WRIGHT for understanding!
Yes it probable is stress. but something really funky is going on and it seem consuming.I wish you peace, I know you understand that one.

I wish one of the icons were a flower, I would pick for you right now.
 

mamaoftwo

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Hey Northerngirl - I hope you didn't think that my question about ALS being rare, was in any way an indication that you could have it? I just get miffed when I read all these posts saying its such a rare disease when it is not. But Wright is right! Statistically speaking, the chances of you and your mom having it at the same time are - well tiny to say the least. It is much more likely that you are having sympathy symptoms as it were. There is one poster here (who is a CAL) who admitted that she had ALS type symptoms while taking care of her PAL.
Re the meds, I had twitches on ativan which is in the same family. You asked what they feel like - well mine are like little tickles under the skin (make sense?). Some I can see (rarely), mostly I can feel something odd and cannot see anything at all. What you are describing could also be parathesia - which is sensory and typically not related to ALS.
 

northerngirl

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Thanks Mamaoftwo

I have been on Clonzapan for about 4 weeks now. I only take .5 mg at bed time I can take up two 6 pills a day. Idid not take it last night because I have a cold an took niquil instead. (because I have been feeling so weird). So needless to say a had a horrible night sleep, twingy things all over and today was just a rough day. My brother phone to see if I was going to take to Mom to make sure her affairs are in order and "we" needed to talk to her about puting her in a care home evetually. He figured she has 3 to 4 months to live. (Am I rambling now?) I told him that I felt that because Dad does all the primary care, (she has home support everyday twice a day or as much as she wants) That I really feel it's thier discion. I also told him 50 % of pals choose to stay at home. Secondly, I am hard pressed to tell the difference as to when we will loss her. could be pnemonia tommorrow or 2 years from now. Hmmmm yeah I get myself stressed out.
Thanks for listening.
 

AHands

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no just "perceived"-visible

Is the muscle weakeness such that the limbs are disabled? Is this a perceived weakness, how is this diagnosed?

The limb doesn't become disabled overnight, but, from my experience, you can SEE the atrophy or wasting--there's places that should be fleshy but are now depressions. Since progression is asymmetric you can demonstrate the wasting by comparing right to left, but you'd recognize the wasting in your own limb without needing to compare.
 

northerngirl

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Hi all!
Had my EMG's yesterday, the tech was great he told me they had a technical name for me "Faker" :-D. Told me that I was ready for the Olympics. Really cheered me up. He was a visiting tech. he said that out of all the test he does for suspected als the positive results run about 10%. And he said he felt he worked with Canada's top neurologist. Then I met with the Neurologist. She was the one that first suspected Mom's ALS. She said it was probable stress and if I did not slow down and look after myself I will have a nervous break down. Hah! they are always wrong I already did that last month I am much better now!:-D I do feel bad about Mom I wish I could do more for her. She thinks I am an angle but I wish I could do something to improve her. She had a respiratory tech come in to day, we are trying to get a pi-pad to help her with her breathing. The lithium is a diuretic so going potty all the time is sure a lot of extra effort for her.
Oh well we are calling it her magic pill, hope it slows the progress down.
 

AHands

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great news, "faker"! :-D Congratulations! Maybe some of your good luck will rub off on mom too! :-D
 

CindyM

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Good news! I like the 10% probability, too. As for the nervous breakdown, LOL, the next time you schedule one let me know and I'll have one with you! :-D CIndy
 

vmd

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northerngirl:

Relax and treat yourself to a good restaurant!
 
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