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Spoffo

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My symptoms began about three months ago (in early April) with a small twitch/tremor in my left index finger. The twitching spread to ring finger and thumb in my left hand and ultimately to the three fingers in my right hand as well over the following month. About two months later I also started to get an involuntary contraction in my left foot . . . felt like a pressing down on the ball of my foot. More recently (past week or two) I'm getting involuntary twitches and fasciculations in both my left hand between my thumb and index finger as well as in the arch of my left foot. I do also get occasional fasciculations in other parts of my body like the left side of my chest and occasionally my right leg too.

I've been tested for B-12 and have had a relatively low B-12 reading (276) but not completely out of range apparently. My CPK levels are also normal (60) but I've had trouble figuring out what that means. I've also had a clinical exam with a neurologist and he said I don't have Parkinson's or MS and that he was 99% sure I don't have ALS. But we didn't really discuss my fasciculations and they seem to be increasingly intense in my left hand and foot. During the neuro exam, my reflexes were normal and I didn't have Babinski or Hoffman's sign. My left side does feel somewhat weaker but I passed both the neuro's strength tests and ones I've tried at home from the internet. I don't have problems walking as of yet but feel off balance and that I'm carrying more of my weight on my right leg. My PCP thought it might be essential tremor in the hands but this doesn't seem to explain what is happening in my feet.

I'm concerned that this is perhaps the early stages of ALS and that I'm one of those rare 6.7% for who twitching is the first sign before weakness sets in. I hope it is BFS but fear that it is not. I have an incredible amount of anxiety and fear about what is happening and I'm sure this could account for some of the trembling in my hands and possibly the some of twitching.

My questions are as follows:

1. Since twitching and tremor appeared both in my right and left hand more or less simultaneously, isn't this out of character with how ALS normally presents.
2. How quickly does ALS move from a hand to the foot? It seemed to happen in about one month in my case (if this is indeed ALS). Isn't this incredibly fast for ALS to move from one limb to another?
3. Does this present as ALS in your opinion? Scared my neuro might have missed something.
4. Weakness seems to be absent although I have cramping in my arms and legs so that may be something to that too.

I have an EMG/NCS scheduled in about three weeks but that feels a lifetime away. I have a five year old daughter and wife who I fear to leave behind.

For all of you who are struggling with ALS and currently diagnosed, my heart goes out to you. I am honored and humbled that you have created this forum where people can find more out about this disease and hope you may help me figure out what is happening.

Thanks.
 
Sorry forgot to note I am a 44 year old male, married and with a five year old daughter. Any response or thoughts would be appreciated.
 
Three weeks of waiting is not a lifetime. It just feels like it. I understand that and I hear you. Each of us has waited - and waited - and many - are still waiting.

99% certainty from a neuro would be good enough for me. Why not focus on that instead of the "what he may have missed" thoughts you are having? You are clearly letting your anxiety get the upper hand as evidenced by your talk of leaving your family behind.

For goodness sakes, any one of us could have a car accident, a fatal heart attack or suffer an aneurysm and die today. Yet, knowing this, we still go through life making plans, driving on the highway, saving for retirement, without so much as a thought about an aneurysm or heart attack or accident. I may be wrong, but I would venture to guess that the incidents of deaths as a result of any one of these incidents, are far greater than dying from ALS.

Please, please, don't waste time fretting about ALS especially given what your neuro told you. I for one, will not second guess him. Remember, coughing is not lung cancer, a headache is not a tumour. Each malady is uncomfortable, but not deadly.

In the meanwhile go out and have fun with your family.
 
6.7% twitch before weakness? where did that statistic come from? Why don't you focus on the 99% sure you don't have ALS statistic the neuro gave you?
 
We've been having a real "flock" of these kind of people here as of lately.
 
Careful Carlos, less you be told to "flock" off.... as I was last week, albeit graciously.

Love hurts so bad! :lol::lol::lol:

Now back to enjoying another rainy Sunday! And they wonder why I'm not sunny all of the time! 8)
 
I've had trouble figuring out what that means. I've also had a clinical exam with a neurologist and he said I don't have Parkinson's or MS and that he was 99% sure I don't have ALS.

My questions are as follows:

3. Does this present as ALS in your opinion?

I have an EMG/NCS scheduled in about three weeks but that feels a lifetime away.

Spoffo, At this present time there is no positive test for ALS, so nobody will be able to give you that diagnosis after 3 months of symptoms. Sorry.

I don't know what a low B-12 combined with a normal CPK level means, or if that combination means anything.
1. Doesn't sound like ALS
2. Could take months/years
3. No your neurologist is correct. I think everybody on this forum will agree with your doc
4. For the weakness part of this disease you'll generally get a wait and see, come back in 6 months for a check up. This is the hardest part. The doctors have to see all the symptoms of UMN and LMN before coming up with a diagnosis of ALS.

Your jumping to the worst possible case and that doesn't help you any since there is no cure for ALS, just the disappointment as you see your muscles atrophy, ability to stand and walk go away, and of course the later stages.

Listen to your doctors as they help you figure out what is causing your twitching in the fingers and contraction in your foot. I'm afraid your going to be a bit disappointed after waiting a whole three weeks and your EMG doesn't show anything.
 
Thanks all for the helpful responses. I did take my daughter to the lake today, ottawa girl, and she had fun splashing about with her friend. Barbie - I got the 6.7% figure as ALS patients who had fasciculation as their primary presenting symptom (as opposed to weakness) from the 1994 Annals of Neurology as cited on several of the BFS websites. Not sure I'm part of a flock since I'm new to this site but I am certainly a bit of a chicken when it comes to what is happening in my body.

Just to respond and further clarify my thought process I should begin by saying I do trust my neurologist to make an accurate clinical diagnosis. He sees ALS with some regularity . . . and can make a much more accurate diagnosis that I can based on internet research. The problem I believe is I've spent countless hours researching, interpreting what I read and seeing how I might have ALS and under what circumstances it might apply to my own situation. This itself seems acted as a tight vise upon my body leading to constant anxiety and a general sense of dread. It is not the job of this forum to help me with anxiety, I understand that, but it is a strong motivator for me wanting to learn more . . . and ideally have some information that might bring relief because it contradicts a diagnosis of ALS.

I guess my basic and overarching concern and wonder is how twitching, tremor and fasciculation can appear in both hands, in the arch of my foot in a short two month time frame. This seems to point away from ALS and not towards it since it has all developed so fast. At one point, my neurologist said that ALS just doesn't present this way. So I'm wondering if others have had this kind of rapid onset in multiple limbs or if this points me in another direction.

Again appreciate time you've each taken to respond. Many thanks.
 
Spoffo,

Hope you are not spoofing the good people here.

To answer your question - It points away! It really really really does. Trust the neuro. Stop second guessing.

You know you have the dread cuz you've been researching (possibly) the worst disease on the planet. Stop doing that! It's not helpful to you. It's making you worse and you'll only exacerbate the feeling of dread. Not a good thing.

Glad you had fun today with your baby girl. Go read her a funny story now... One with a happily ever after. They're always good for the soul. It'll help you to fully get back into your life.

Let us know how your appointment goes.
 
No spoofing here . . . just genuine dread. My middle name is Spofford (hence spoffo). All this research on ALS has given me a much more real appreciation of the present moment and how to live it with joy. And also given me mad respect for those that are diagnosed and the time they take here to help those that are trying to figure out what is happening to our bodies.

Thanks for your kind words just now . . . they are really genuinely amazingly helpful. It is my wife's turn to put my daughter to bed tonight but I'm listening in from the living room. We are in book 5 of the Little House series, The Long Winter. But we are at the end of the book now and winter is finally breaking and your words have helped me begin to break this dread funk too.

:smile:
 
The key here is that you have spent countless hours researching a horrible disease. I remember when my husband first got sick, I researched ALS and got physically ill when I read about it. not good! follow the advice of Ottawa girl--no good comes from this, not for you and not for your daughter.
 
Re: Scared I may have ALS! - UPDATE

I've seen my neuro twice now and had an EMG conducted on both of my arms (but not my left leg). The EMG was clean and the doctor doing the test said he saw no signs of ALS in my arms. I also had an MRI that was clean my primary neurologist said ruled out Parkinson's, Huntington's, MS, etc. I've had lots of blood work done too and everything has come back more or less normal.

That said, I have ongoing concerns and am hoping for some advice here:

1. The symptoms in my left foot seem to grow worse each day. The foot is numb/tingling much of the time, there is an involuntary movement that pushes the arch of my foot down and my left foot is objectively weaker than the right foot. It seems as if I'm almost starting to hobble on my left foot, favoring my right leg, etc.

2. I have bad stiff and cramped legs on both sides. The cramps feel like they are rising up through both legs. When I swim or walk the legs seem to cramp quite badly and more quickly than they ever would in the past.

3. My arms feel limp/weak although they are still able to lift everyday items. Sometimes I feel I have to hold a coffee cup with both hands to steady it. The neuro thinks I may have some form of postural tremor.

Based on these symptoms:

a. I'm wondering is it possible to have a clean EMG of the arms but have developing symptoms in the legs that go undetected by the EMG. Would an EMG in the arms register motor dysfunction in my left leg?

b. Does what is happening in my left leg appear as the initial symptoms of foot drop? I'm quite concerned on this front.

c. I do have considerable anxiety about all this and am curious about the extent of how my anxiety is affecting these symptoms. This third question is perhaps outside the province of this forum.

Again thanks for all the previous comments and help. Appreciate any new insight.

Spoffo
 
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