A good read if you are scared

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mhswarriors

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Since I had my deep scare witl ALS I have had a few days with relapses. Belive it or not wikipedia has some great information that makes sense. I know most of you have read it hear, but this is jsut another source.

Amyotrophic lateral sclerosis - Wikipedia, the free encyclopedia

Key point:

Fasciculations ARE NOT a first sign of ALS, weakness is.
Bulbar onset Starts with speech garbling and slurring, then nasal speech, then swallowing problems.
 

amyecpa

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Okay, I don't understand. I just got through reading an entire post about PALS' experiences and the majority said that fasics were first. In most cases they were far in advance of any noticable weakness. I'm just so confused and so scared.
My next question is how did your weakness come on (how did you start to notice)? I have what I've described to neuros as numbness down my right face/arm/hand. It is not actual numbness at all (no loss of sensation). Its just that the arm/hand doesn't feel right. I open and shut my hand a lot to make it feel alive. This "numbness" has now moved to my entire right side and I have a milder version on my left.
I don't know if this is related, but I also have a head tremor. ALS has been off my radar because I had a clean EMG 7 months ago, but now it is front and center because I'm having fasics. They are mostly concentrated in my left thigh/calf. I've noticed no loss of strength, but I wonder if my "numbness" is actually weakness.
I will admit that at this point I am crippled with anxiety so I do not take your responses lightly. The PALS on this site and others that are in diagnosis limbo are exceptional people to take their precious time to respond. You don't know how much you are appreciated.
Love to all - Amlye
 

joelc

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Fasics don't mean a thing in relation to diagnosing ALS. Everyone has them and not everyone has ALS. Just like everyone gets headaches but not everyone gets brain tumors.

With a clean EMG there is nothing to worry about.
 

mhswarriors

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Be careful what you read about PALS. The information might not be clear. Were their fasics local or widespread? I have also heard that some people "self diagnose" so they might not be officially diagnosed. Also just because you have fascis doesn't mean you have ALS. The bottom line is weakness is what debilates people with ALS. If you don't have weakness what is there to worry about. Twitches are annoying, but they don't stop you from doing everything you normally do. Why stop living over the worry of soemthing that is VERY rare. Same thing with Bulbar....if you are not slurring words and choking on food....then nothing to worry about.

Even with that said even if you do have weakness and fascis, and slurring speach, and trouble swallowing, it may not be ALS. There are other neuro diseases that are treatable that can cause this. There are also viral diseases, and hormonal problems. there are tons of things that it could be.

One thing I can guarentee though is without weakness you are not clearly ALS. And I mean real clinical weakness (not percieved). the clean EMG should give you piece of mind.
 

amyecpa

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Thanks for the responses. I wouldn't be worried about fasics alone, just as i wouldn't think gas was stomach cancer. I'm just so concerned with my right-sided numbness/weakness. I just read a thread titled "Diagnosed Probable Als and I'm 23" (Can't remember the poster at this time) and his description sounds so much like how I feel. My "numbness" is just less sensation than the other side. Also, have any of you heard of someone having a tremor with ALS? - A
 

trfogey

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Okay, I don't understand. I just got through reading an entire post about PALS' experiences and the majority said that fasics were first. In most cases they were far in advance of any noticable weakness. I'm just so confused and so scared.
I was diagnosed three years ago and have seen four different neurologists during that time and before diagnosis. Not one of those neurologists has ever asked me about fasciculations. I assume that if the fasciculations were any kind of reliable indicator of progression, the doctors would ask about them and want to know details about them. But they never have and I don't expect that they will.

In contrast, they always ask if I've had a fall since I last saw them. They've always asked this question even though my legs have always been strong enough to pull the doctor or physical therapist out of their chair when I resist their attempts to move my legs.

Given the fact that the neuros always ask one question and never ask the other, which do you think that they judge to be an important indicator of progression and which one isn't?

My next question is how did your weakness come on (how did you start to notice)?
Uhhhh... when I could not do something that I had been able to do for decades. Like not being able to button the cuff button on a dress shirt. Or not being able to type with one particular finger. Or not being able to hold on to a glass with one hand. Or not being able to hold a piece of meat steady on the plate so I could cut it with a knife. Or not being able to feed myself soup because my wrist wouldn't stay rigid enough to hold the spoon level without a brace.
 

amyecpa

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First off, thanks for the responses. That being said, I'm not so much concerned with fasics in relation to progression just to onset. I am coming to this forum with 11 months of exhaustive testing. MRI's, lupus/connective tissue panel, Western Blot lyme test, myasthenia gravis,hormonal/nutritional testing via blood, saliva and stool. I saw a neuro for the first time 3 yrs ago complaining of numbness/weak feeling in right arm. He did MRI and said everything was fine. I took him at his word and lived with it. Now the "numbness"/weak feeling is throughout my right side (head to toe) and now some on my right. The fasics just started about 3 weeks ago and are very concentrated in my left thigh/calf. My calf even feels tight from all the contractions. I've been seeing a general neuro for the last 11 months and I think I made the mistake of describing my feelings as numbness when there is no actual sensory involvement. I get emotional in his office and he is always in such a hurry. The only time he did a clinical exam (reflexes, etc.) was on the first visit. I've seen him 9 times since. MND came up 7 mths ago, we did EMG/NCV (clean) then moved on. Now I'm reading about EMG's and I'm not sure how thorough it was and I've read where people have had several clean ones before they are dirty. I understand that EMG's only detect LMN involvement. What does that exactly consist of? Are my symptoms more like LMN or UMN? You throw in this pronounced head tremor and I'm a mess.
I don't have a history of hypochondria, but I'm getting no answers from testing and am having a very hard time functioning. I am a 34yo female with 2 small sons to take care of. Right now, I am useless, a complete pile of tears and emotion. (I can't get in to see same neuro until Aug) I realize that it is not ya'lls life's purpose to calm the fears of frantic mothers, but I just have no one to talk to and I'm looking for anyone with a similar experience. I am terrified.
I'm sorry if I annoyed you. - Amye

P.S. I haven't noticed any weakness like you described but I have severe exercise intolerance. I can't ride my bike a half mile without my thighs and calves burning, when only 11 months ago I was riding 20 miles a day.
 

charlottecorday

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I'm new here, but I thought we had a sticky regarding UMN/LMN signs. I know that would be helpful to you. Maybe it would make you feel better to know that I had two dirty EMG's and after 6 months still have received three differing diagnosed, not ALS. As a patient, you have to have patience.
If we do not have a sticky with that information, someone let me know, I'll try and get it together next week when I am back at home.
 

charlottecorday

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By the way, I completely identify with your useless, pile of tears, terrified feelings. Do everything you can not to think about yourself till August.
 

mhswarriors

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Look at it this way. You only get a limited number of days here....why spend them worrying. Enjoy your life and family. Everyday spent worrying is another day gone.

Be thankful that you can still do everyday things!
 

Northern Dancer

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Amyecpa,

Please do not worry about annoying anyone with your inquiries. There is an open invitation to join this forum and you should never feel like you have to apologise. Most people on this site began their journey here with similar questions if your look at their first posts. You have enough on your plate without worrying about other people's reactions.

Sometimes a neuro only chooses to do the EMG testing on one limb if the clinical signs are absent in the other limbs and no lower motor neuron problem is seen on the emg. Only my legs were tested and the physical exam was the clincher - it was PLS. Don't obsess about EMG results or you will drive yourself crazy. The only interpretation of your test should come from the testing neuro. Remember that neuros are human, too, and they can only diagnose what they see at that time. No crystal balls in medicine. And all of us on this forum can only recount our own personal experiences as we have perceived them.

Hoping that you find all the support that you need here,

Lorna
 

Zaphoon

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AMLYE

If any of your problems could be attributed to ALS, an EMG would have picked up on lower motor neuron trouble. Since you have no lower motor neuron trouble (as evidenced by clean EMG's), you should smile and do the "happy" dance as you do not have ALS.

Numbness and fasciculations can be caused by a plethora of problems outside of ALS. It may take some time but I'm confident the good doctors that have been examining you will eventually come to a proper diagnosis for you.

So, why not smile and scratch that big, bad, booger - ALS off the list of possibilities?
 

amyecpa

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Thanks so much for the responses. I've just gotten so confused (too much Dr. Giggle) about clean/dirty EMG's and LMN/UMN probs. I do appreciate the comments like "live each day as if it were your last because none of us are guaranteed a day". I'm not trying to ignore those well meaning members that tell me to get off the board and live, but it is so much easier said than done. I am in a very BAD place right now emotionally. But thanks for all words of wisdom, encouragement, and even candor.

One more question though.....I'm having fasics all over, but I'd say 85% are in my right leg/calf. These are painless jumps that I can feel and sometimes see (if I happen to b lookin). My question is this: even though the fasics are painless, my left calf is sooooo sore, like I've done 1000 toe lifts. Does anyone have any experience with this?

@Zaphoon, what of my issues sound like LMN? That is where I'm confused. I do understand that LMN probs show up on EMG, but if you are only having UMN issues it won't. I just don't know the difference.
 

Zaphoon

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Lower motor neuron death produces muscle weakness and atrophy. It will start in one region of the body and progress to another and another until each reason has been damaged.

Some experience Bulbar region onset but usually the lower motor neuron problems start in in a limb.

Upper motor neuron death will produce spasticity, stiffness, cramping, hyperreflexia and pathological reflex signs such as Babinski, Hoffman and the jaw-jerk.

This is my understanding but keep in mind, I am not a doctor.
 

amyecpa

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Thanks Zaphoon, that was a very clear explaination
 
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