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Fredrik Malmo

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Hi everyone,
I am a 37 year old male with symptoms for nearly 4 months. It all started the 10th of April with a stiff left leg and aching thigh muscles. Three days later I experienced the same feeling in my left arm. At that time I had no obvious weakness, only sore muscles in my left limbs. Five weeks after the initial symptoms I noticed the first twitches, mainly on the left side (leg, arm and back). At that time I had weakness (not clinical according to a gp) since I had problems carrying my three-year old daughter with my left arm for a longer period. A week later I started having hip, neck and lower back pain. I had developed obvious atrophy of my left thigh and left forearm. I also had some problems with my voice but that has improved again. Two months after the initial symptoms I finally got to see a neuro and he could confirm the atrophy of my left thigh (a bit more than an inch thinner than my right) and he also noticed quite active knee reflexes. He ordered an NCV /EMG and blood tests. The blood tests came back normal. Three months into this misery I had the electrophysiological tests and to my surprise they were normal. The EMG showed no abnormalities. It was performed at a university hospital by an experienced neurophysiologist and he tested my left leg and arm, clearly in my affected muscles. Now, I am waiting for a new appointment with my neuro. My symptoms are progressing and I have mild atrophy of my left pectoralis muscle and also left calf. My left leg is weak and stiff and so is my left arm although I can still use them. I have twitches on my right arm and leg but not that frequent . Possibly my right arm is getting weaker. My weak and painful neck is what bothers me the most. I know it has been addressed before but how common is a normal EMG that is later followed by a dirty? Are there any statistics from the scientific literature? I was so sure my EMG would show abnormalities so I was almost speachless when the Dr told me it was normal. Mentally, I felt a bit better for a week or so after the EMG but now I am back into the thinking of ALS 24/7. So I guess there will be more tests to exclude other diseases.
Ironically, I listened to a talk at the AACR meeting in San Diego in April when all this started where they tried rilutek in a phase 0/I trial against melanoma. I had never heard of the drug before but found it interesting and read a bit more about it. Now I am just too aware of it.
Fred
 

awieleba

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WOW~

you sound alot like me. I had a left leg/calf thing in the begining that I thought was just varicose vein or something. Then the thigh weakness. Then the twitching. then this website. then to the neuro.....same deal. the emg was clean, wich was a relief intially. my symptoms have gotten worse since and I have the same thing with the thigh~my left thigh all of sudden Is 1 inch smaller than the other. I had a burning (like a sunburn feeling) on that thigh on and off for a few weeks that I had noticed. MY left ankle has muscle loss and my calfs shrank. very strange..., and the small muscles in my hand have shrunk. My voice goes haorse.
anyway, I just had a muscle biopsy yesturday.
I also have a hard time taking in a breath. I have yet to get that checked, I'll put that On my huge list of docters vists.
I understand your concern. I too have a hard time holding my kids with my left side and never had issue with it in the past. They dont note real clinical weakenss. However, I cant work out or play my tennis anymore.....
Oh, I also have brisk knee reflexes.

Hang in there. I have learned (mainly from the folks on here) that it can take awhile.
I will keep you posted on me, as we have alot of the same things.

ps. My mother in law measured her legs for me and guess what? one of her legs was thinner than the other.
 

Al

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OK guys. I will admit that I did not read all of your post. As soon as you can relate the day you felt/ saw/thought, you thought you had a MND/ALS I move on. I'm ;pretty sure you don't have ALS. It doesn't start one day and you say, Oh crap, I've got it. It sneaks up on you, kicks you in the as_. Then you say OH CRAP.
Until you've got a diagnosis from a GOOD Neuro, you've probably got something else.

AL.
 

BethU

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As soon as you can relate the day you felt/ saw/thought, you thought you had a MND/ALS I move on. I'm ;pretty sure you don't have ALS. It doesn't start one day and you say, Oh crap, I've got it. It sneaks up on you, kicks you in the as_. Then you say OH CRAP. Until you've got a diagnosis from a GOOD Neuro, you've probably got something else.

AL.

Al, I know the exact date I first experienced slurred speech and other symptoms, (March 16, 2006), and I've been conclusively diagnosed with ALS.

Did not have any speech problems before open heart surgery on March 13, 2006, and when I was brought out of the coma on March 16, I had slurred speech, blurred vision, yada, yada, yada, which have steadily gotten worse, along with other symptoms that are now appearing.

Of course, I did not have a clue on that date that my speech problem was going to turn out to be ALS ... and didn't realize I was slurring words until visitors pointed it out to me ... and I spent the next two years denying that it could be anything like MND ... but I do know the date the symptoms began.

I can also tell you the exact date when my speech got radically worse; it had been steadily improving with speech therapy starting in January, 2007, but another surgery in June 2007 wiped out all progress and marked the beginning of a huge decline.

I guess this proves again that every case of ALS is slightly different, and we don't all follow the same map.

BethU
 

wright

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It certainly appears that your surgeries are what exacerbated your symptoms, symptoms that were more than likely developing without you knowing it. In my opinion (and I have also read a few journal articles dealing with this and have spoken to neuro's about this, which helps form my opinion), if you had not had those surgeries, your symptoms would have developed very slowly.

I think that in most cases, ALS is an insidious disease that . . . as Al points out . . . sneaks up on you.

You hear it all of the time: someone all of a sudden can't turn a key or button a shirt or can't lift their foot, etc. Those are catastrophic events that people assuredly remember, but that wasn't the start of their weakness. The weakness was developing up to that point . . . weakness that people didn't realize was happening because it was so slow to develop.
 

wright

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Sorry Fred, I didn't reply to your post

This is just something to think about that could explain the clean EMG with progressing symptoms:

It sounds as if you might have been hit with some kind of virus initially. There are many autoimmune syndromes that develop after a virus that don't have a "name" so to speak (all they're called is simply, post-viral autoimmune syndrome). They can develop quickly and present with your symptoms.

The autoantibodies produced could have caused some denervation, resulting in weakness and atrophy that happened some time after your initial symptoms. The EMG could have been done too early to have shown any abnormalities if the start of the denervation was about a month or so before the EMG was done.

Bloodwork can also be completely normal with such a scenario.

Again, this is just an alternative view point that could explain both your symptoms and clean EMG. Let us know what happens at your next neuro appointment. In the meantime, dont' jump to any conclusions, because as of right now, you have not been diagnosed with a thing. Don't self-diagnose yourself, because it almost always leads to bad thoughts.


P.S. Another thing that could be happening, is that you are healing from whatever "hit" you, which is why the EMG is now clean. It always takes longer to recover than it does to be debiliated by an illness.
 

awieleba

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Some people may not notice weakness prior to any real symptom BUT some people do. I have no diagnosed and I can NOT put a date on when things started to happen, only a general time frame.(last fall). It did sneak up on me in a way. I was able to play tennis, then got a unrelated illness that masked alot. MY legs felt like Jello and I have not been able to regain the strength in them or arms to work out over the last 6 months. Muscle thinning could of been happening and I did not know it, I knew my hands and feet were changing. I pray that I dont have this but some people are very in tune with there body. There are alot of people that write everything off to age or viruses and dont pay attentien. Just because you are in tune with your body (like alot of athletic people are) does not discount you having als because it did not "sneak up" on you. I have read many post from pals were it was not over night they couldnt turn the key in there car. there arm was weak proir to that. Anyway, I dont want to disagree or be "fiesty" but everyone is differnent as is Mnd's of any sort. I guess I am feeling fiesty after all, sorry.

Lets just get back to talking about bra's!
 

BethU

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Thanks, Wright, you are absolutely correct, as always. (That's why you're "Wright," right?:))

My point was not that ALS "happened" all at once on that day, like being struck by lightening, but that there was a specific day on which strange symptoms appeared for the first time, and I became aware of them. I know the date only because I keep a calendar. :) I'm sure in my case ALS was lurking waiting to happen for several years, actually. There were a number of unexplained "issues" that appeared and disappeared between 2002 and March 2006.

I just hate to see someone who is concerned about their health dismissed simply because they can remember exactly when it was that they first noticed symptoms.

Sorry to butt in on this thread, but felt I must come to the defense of people who keep calendars!
BethU
 

wright

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April, I agree with you . . . there are people who are much more aware of their bodies than other people. However, I think what Al and I meant, is that if someone knows the day they had all of a sudden weakness, it probably isn't ALS. To start to feel weak over a period of time and the development into more profound weakness, can certainly be indicative of ALS . . . but it also very well might not be.

That actually happened with me: I used to compete as a weight lifter (before I got hit with what I have) and I would know even a 1% change in my strength . . . and I not only could tell you the day I got weak, but the exact time it happened. That should have told me that it wasn't ALS but at the time, I didn't know how ALS presented. I also watched my right arm muscles and back muscles atrophy before my eyes in a matter of a month or so, which also should have told me it wasn't ALS. But at the time, I was frightened beyond belief.

The point is: I think there are a lot of people that come onto this forum, scared out their minds, but their symptoms just don't present like ALS. This forum is one of support and so to give solace to those frightened people who present with symptoms that are not indicative of ALS, is part of what that support is. Certainly it is important to tell them to see a good physician so they can get to the bottom of what they actually have.

To Beth: I understand what you were doing and I commend you. It was very kind of you to lend support to Fred at a time when he definitely needs it.

Take care all.
 

olly

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hello

sorry to butt in, i would like to say something about onset.
i first thought i could pin point when i got ill,starting with muscle spasms in my legs in may 99 that gradually got worse over 2weeks and have been there ever since.
but looking back before then there were a few tell tale signs,one is at work people noticed i kept dropping things from my right hand,i now know this is weaker.
i also now know i had drop foot a few months after starting with the spasms as i was dragging my foot along and could not lift it up,but it is almost better now.
my progression luckily has been very slow up untill about 2yrs ago when some symptoms started to speed up and new ones develop like my swallowing and breathing problems,that have snook up on me over the past 18mths.
it is possible i may now have atrophy,the muscles in my foot/ankle have slowly started to disapear leaving big gaping holes,my shoe wont stay on that foot,my arch has collapsed and my ankle is very weak. i first noticed something months ago,but it has been developing very slowly.
i must add my left lower leg has definate neurological weakness.
i have heard of some who can develop als and only live a few months,i wonder though if it was as there are a few things believe it or not worse than als but the same symptoms but servival rate is less than a year/quicker progression.
take care.
caroline:)
 

olly

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sorry,forgot a few points

firstly the desease's with quicker progression are those that effect the axon's themselves,also cjd.

i was convinced for years i had ms. someone mentioned mnd to me a few years ago and i dismissed it straight away,though my only knowledge of mnd was knowing about stephen hawkings.
i developed fassic's /or first noticed them about 6mths after starting with the muscle spasms,mainly my left lower leg and right upper arm/shoulders.
i never have given much thought to them as more than just bothersome,so i find it very baffling when people come on the forum with twitchings and automatically think it is als.
were i now have atrophy in my left foot i did have alot of twitching there,but again just bothersome. you can see only fine movement under the skin there now,like fine ripples.
recently these fine ripples have started in my right lower leg.

wright,i am sorry but for the first time i have to disagree with you on atrophy in pls.
i know of pls'ers who have atrophy but not from dissuse.
some with pls can show non specific denerviation on emg or atrophy but not enough to justify giving them a diagnosed of als.
in studies these would be classed as umn dominant als,but are diagnosed'ed pls to avoid any muddy waters and unnecessary upset.

before joining this forum i did not know anything about mnd or tests for it.
i know i did have a nvc but not sure about a emg,i got mixed up as i had a eeg to measure brain waves.
at my next appointment i am going to ask for a emg and muscle biopsy.
i have a diagnosed of mnd but no specific diagnosed of als/pls,who knows they may find something else instead.
take good care.
caroline:razz:
 

wright

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Sorry Caroline, but I'm going to have to disagree with you :-D (this could go on forever, huh . . . all in "good fun" of course).

Muscle atrophy is a lower motor neuron symptom, because it's the lower motor neurons that innervate the skeletal muscles. If someone has muscle atrophy and is diagnosed with PLS, then as you put it, they have upper motor neuron dominant ALS . . . dominant being the key word . . . so it also means they have some lower motor neuron signs . . . which can include some denervation muscle atrophy.

A pure diagnosis of PLS will not present with muscle atrophy, until progression has been happening for a long time (again, disuse atrophy).

Good luck with your appointment, Caroline. I hope they find it is something else, too.
 

olly

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hi wright

i totally agree with your reply:lol:
in pure pls there should be no lmn symptoms present.
but there are some with a diagnosed of pls who do have slight lmn signs/symptoms

one i know of is the spokesperson for the spf and has had pls for over 15yrs i think but has atrophy in her hands ,she goes round giving talks to doctors and neuro's and educates them on pls.
i agree these would be classed as umn dominant als,but the neuro's don't use that in giving a diagnosed,with slow progression and slight lmn involvement they diagnosed pls as a diagnosed of als is not justified:roll:.
umn dominant als is only mentioned in studies but the term is not used in diagnosed.
there are some with diagnosed of als who can still walk etc years after diagnosed and a very slow progression.
as i said it is muddy waters and i suppose it depends on the neuro giving the diagnosed.
so maybe the neuro's need to get together and determine the diagnosed criteria for these ones:confused:.
i do think doing research on the slow progressers could be beneficial.
take good care
caroline:-D
 

awieleba

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kinda funny......I think we lost Fredik in the thread....maybe he will be back?
 

Fredrik Malmo

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Hello,

I am not lost and I would like to say thanks for the replies. It is comforting to here from other people (although I wish none of you had to be here) and possible non-ALS explanations to my symptoms (Thanks Wright). I have tried to think about any signs of previous weakness before I noticed it but there were nothing. I went cross country skiing for a week in March, just three weeks before symptoms started and there were no problems at that time, I was strong. Now I wouldn´t even consider going skiing or do any kind of sports. It is so scary to see previously well-defined muscles atrophy in a very short time. I will keep you updated.

Fred
 
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