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Mulle

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Nov 26, 2013
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Learn about ALS
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SWE
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Malmo
I will try to keep it short. I am 34 years old, male, from Sweden, with two small children at home. The anxiety is eating me up and I just feel a need to share my situation while waiting for my neurologist appointment (still far ahead in time). I don't expect anyone to reply with a diagnose but perhaps some wise words from the very knowledgable people around. By the way, I have read the stickies, several times...

About 1,5 months ago I got a sudden feeling of discomfort in my left hand, which has persisted since then. I would describe it as a very subtle weakness when making a fist or pinching. Some finger movement is somewhat jerky and "with resistance", especially with the thumb and index finger. I feel I have to put a small bit of extra focus on doing simple things. My forearm sometimes feels very tired after continous movement of hand/fingers (like computer work). I do feel and sometimes see some very fine vibrations in my thumb and forearm. No tingling, no numbness, no pain.

About one week ago I woke up with a similar, but stronger feeling, in the right hand and arm. However, it has not been as persistent as in the left arm and the right hand/arm is up and down in symptoms, but they never go away completely. Also, I feel that the ring finger, rather than thumb is mainly affected in this hand. I can sometimes get an occational "icy" feeling in this shoulder/arm/hand.
In addition, last week my right calf has started to cramp at nights.

So,
I do not drop things. I do not stumble. I don't choke when drinking. I am able to do what I usually do, but the strength is not there to 100% and fine movement just feels and behaves odd. Well, it must start somehow and I am truly worried that my symptoms may be the beginning of it all.

Thanks for reading, any comments welcome.
 
Well, I just don't know what to say. It could be anything at this point. But I think you know that already. Best thing is to see your neuro and let him do the testing. Try not to focus too much on ALS. I know it's hard, I'm in the same situation as you are (no diagnoses yet, 3 small kids, under 40).

I'm trying to not think about it as much as I can. Which is not easy, because my main problem at this point is the salivation I have since october. But before that, I thought about it a lot because the constant feeling of fasciculation. I'm sort of used to that now, so it don't bothers me so much, but the salivation does worry me.

So, were in the same boat I think. I'm waiting for a invitation for the EMG. Already saw the neuro, who didn't immediately think of ALS, but wasn't sure.

Wish you all the best for now, hope it's something else then ALS you are suffering from.
 
It is not the thinking about it. It is not letting it stop your life. I thought about my illness all the time but I did not let it consume me, control me and take over. You can't help not think about it, what you choose to do is another thing, don't live like a patient....just live. Good, bad or otherwise worry won't change the outcome, it will just waste time that could have been spent better.

We have all been in your shoes, but patience must prevail, this takes time and it is hard and frustrating.
 
Are you right or lefthanded?

ALS is generally not a sensory disease, so the "icy" feeling points away from it. This sounds rather like nerve impingement or possibly a case of frozen shoulders.

As long as you do not have clinical weakness, e.g you are not feeling discomfort, you are rather not being able to do things normally, please do not jump to ALS. And even if you do have clinical weakness, there are so many things that need to be ruled out before ALS is even on the table.

Problems with salivation ( I presume an increased amount) can be anxiety related. With ALS you do not have more saliva, it is just that you can not swallow it down to the same extent. These issues also generally come later on in the disease.

So, try to take it easy and wait for your appointment. I know, easier said than done. On the positive side, hello fellow Swede!
 
Thanks for your supporting words, all three of you!

Today was a bad day. My second calf started to cramp as well. I went to see a second PCP doctor. He did a thorough examination, checked for carpal tunnel syndrome but found no clear indication for it. He didn't hesitate much but ordered an MRI and EMG. Anxiety reached a new high and I cried for the first time in my adult life. I just feel the symptoms are narrowing down the possibilities...

I guess the result will be on the table in 3-4 weeks. While waiting for it I have decided not to read any more in the forum, it just makes me worry even more I realize. I will be back when I get the result, whether good or bad.
 
That is the best thing you can do. Good for you and I wish you luck.
 
I see no point in crying "why me and not someone else instead". More productive to be p**ed off because of the fact that there still is no treatment to anyone who happens to have that small print in their contract. Better me than someone else in my family, but none of us should stop pressing for a cure until one is found.

The only reason we keep dying of this disease is the fact that most of us die too quickly or are too tired to enforce any accountability on the research community. So, as long as you have hope it's something other than ALS, why not spend some of your energy getting good karma and figuring out a way to improve the society's efforts towards ending this curse for mankind? If nothing else, makes you feel better for having tried.
 
I too have scary symptons. I had numbness and tingling in lower legs. Went to neuro. Did EMG/NCV diagnosed idiopathic neuropathy as all labs normal. Got really scared started on Internet and became convinced of ALS. Went to specialist in neuropathy. Received Cadillac work up for neuropathy everything negative even the EMG/NCV this time that was 12/12. Still had heavy leg feeling then began with difficulty swallowing had swallowing eval normal in 7/13. Told normal. I was having these symptons and insisted on EMG tongue in 8-13. Normal. I saw a third neuro in sept. she did full exam said no bulbar. But I continue with constant awareness of saliva. So are my muscles not working subtlety or am I losing my mind I also went to top ALS specialist in NYC told me I had some thing maybe but not ALS. He did find a positive Hoffmans sign. I am so sorry but I feel like they are missing things ...
 
My brother had the same symptons in the hand for 6 months, and then later he had muscle twitches in the bicep of the same arm. He has been diagnosed with ALS. ( the muscle twitches DR say are definite signs of ALS) . WE have seen 4 neuros... 0ne said it was carpul tunnel, and another had doubts it was ALS and 2 said it was ALS. In fact the ALS specialist at Baylor said that his hand problems were a system of ALS ? Hand surgeon said his carpul tunnel and ulnar tunnel were seriously constricted. Last week, he had surgery on both. He know has FULL use of hand and fingers.... So, the ALS Dr was wrong on that sympton....
** **I would def seek the advice from a Hand specialist first. to see if it is carpul tunnel..
Prayers heading your way for comfort and peace
Robin
 
praying for God to bless you and praying for a good report
 
I guess the result will be on the table in 3-4 weeks. While waiting for it I have decided not to read any more in the forum, it just makes me worry even more I realize. I will be back when I get the result, whether good or bad.

Too bad he won't be back but am betting he will. Just a note that you might not have any concrete answers in 3-4 weeks, or 6 months or a year.

Just learn all you can as knowledge is the best defense against worry...or so i'm told....and I lived for a number of years in Stockholm on Valhallavagen across from the Olympic stadium so tell a Swede anything and having him do it are two different things. (kidding)
 
dec/2009 went to hand surgeon, she said, yes there is carpal tunnel, but operating would not help, said there is something else going on and send me back to neuro
 
@pearshoot

the hand surgeons are indeed the early spotters of this. i was referred to one for ulnar nerve and carpal tunnel and he said he would operate so we could rule that out. he sent me right back to the neurologist who then sent me right to the als clinic. on the timeline of things, it was an unnecessary stop but i'll be grateful to him for getting my mind engaged in this from the onset.
 
@pearshoot and mediasmsrt,

I've had this conversation before and even started a thread two weeks ago on how it seems like there is a decent percentage of pals who were initially diagnosed with carpal tunnel or ulnar nerve entrapment. Having gone through it yourself, why do you think that's the case? Do early ALS symptoms really mimic the two, or are most neurologists unable to tell the difference, especially early on. I have ulnar nerve entrapment and recently started experiencing twitching in my arms, and from everything I've read, that is not normal.
 
speaking for myself, i started with gross atrophy between my thumb and first finger and an inability to type with the left two fingers of my hand. One symptom pointed toward ulnar and the other carpal tunnel. As ALS isn't "common", the thought was a hand surgeon. By the time i got in to see him for an evaluation, I had fasiculations in the atrophied area and couldn't lift all my fingers past level. Went to PT for hand exercises and my strength went to 12% of the other hand...back to the neurologist and hand surgeon, then to the EMG (three times) and now at the Lou Gehrig Clinic.

I was told by all that the ALS diagnosis is a process of elimination. And by the way, both the ulnar and carpal surgeries were successful (by EMG) and the condition just worsened and that led everyone to ALS, which is now classic.
 
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