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Matt21

Member
Joined
Aug 8, 2011
Messages
20
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
ON
City
Toronto
Hello Everyone, I would like to describe my symptoms with the hope of getting some advice from you as to the likelihood of this being ALS.

A little over 2.5 years ago, I played soccer and noticed that I couldn't run as fast as I could before, it felt like my legs didn't have the energy they once did. I didn’t think much of this and just assumed that I was getting older (I was 31 yrs old then). Over the last two years, my legs got progressively weaker, stiffer and I started feeling tired all the time. My legs feel as if I had worked out the day before, despite getting 8 hours of sleep (unrestful
though) and not having done any exercise. Both legs are affected equally. About a month ago my arms started feeling that way too, although not to the same extent as my legs.

Secondly, when I try to work out I cannot lift as much weight as I used to. In addition, my muscles cramp up after I do a small number of lifts or even sit-ups. I also wanted to mention that my muscles are twitching every now and then and that my quads are fasciculating a lot when I hold a squat position. My tongue also twitches a bit and feels
stiff sometimes. Other than that, I am not tripping or dropping things and the neurologist cannot detect any clinical weakness.

Lastly, my muscles feel worse in the morning just after getting out of bed and then they feel better in the afternoon. After a minimal amount of walking, my calves feel very stiff. My body never feels “normal” there is always tightness and heaviness present.

I am being seen by a neurologist to investigate the cause of my problems. I had an MRI that came back normal (cervical and spine), an EMG/NCV last month (right leg and arm) that was clean too…except for some minor MUAPS(?) on the right tricep but the neurologist was not concerned. The neurological exam was normal, perhaps slight hyperreflexia in both knees. I did a lyme test that had some Indeterminate bands and one positive band but overall the Western Blot was negative. CK is normal, CBC normal, TSH normal, Cholesterol high, liver enzyme slightly high, electrolytes normal (done 2 yrs ago). I was also tested 2 yrs ago for the RA factor and the tests came back normal. I would appreciate if you could comment on my symptoms and perhaps let me know from your experience if there are any other tests that could point to a diagnosis.

If anything needs clarification please let me know and I will provide more details. The neurologists are puzzled and cannot give me a diagnosis. Myself, I am losing a lot of sleep fearing that this is ALS. I have been told to "wait and see".

Thank you.
 
If your neurological exams were normal, then you don't have ALS. No idea what else it might be, but not ALS.

Good luck.
 
Hi Matt, I went through a hell of a scare, reading and reading things on the Internet, I went to 2als specialists and 2 neuros for my weird symptoms ( that I still have) had 3 emg's all clean. My tongue also twitches when I stick it out and feels weird, but it is not Als. The people on this site are so helpful and they do have als, so believe what they tell you, I wish I did and did not put myself through the living hell that I did. Really look at my back posts, and try not to put yourself in the horrible place that I did. Try to have a nice rest of thanksgiving.
 
Thank you for your comments. I appreciate that you answered my thread, I believe that I am putting myself through a lot for something that hasn't been confrimed by a physician.
 
As always stated in these threads at some point--first, read the sticky posts. Second, clean EMG means no ALS.

Muscle stamina and weakness are two different things. One major cause of muscle fatigue--and even pain--is fibromyalgia. Helen will probably be round to tell you to get Lyme further investigated.


It's not ALS--the EMG would have shown it--doesn't mean there can't be an issue--so hopefully your GP can find one. Good luck to you.
 
So I have read the stickies and they did answer some of my questions, thanks for pointing me in that direction. I will be having another EMG and NCV at a neuromuscular clinic next week. The reason for that appointment is that this clinic also investigates metabolic myopathies but the neurologist doing the muscle biopsy wants to repeat the EMG and NCV as part of his assessment. I will write more about this upcoming visit once I have the results.

I also had a question about ALS symptoms, do they tend to be worse at a particular time of the day? Can anyone comment if stiffness and weakness is a lot worse in the morning upon waking up than it is in the middle of the day?

Thank you
 
I also had a question about ALS symptoms, do they tend to be worse at a particular time of the day? Can anyone comment if stiffness and weakness is a lot worse in the morning upon waking up than it is in the middle of the day?

What makes you think that ALS symptoms change during the day? Once muscle fibers are paralyzed (which is what ALS does), they don't work anymore, so they can't get better and how much "worse" can you get than "unusable" or "useless"?
 
Even before the paralysis sets in--no, they don't 'ease up' as the day progresses. There are a lot of causes of AM stiffness--let your neuro, or even better, a Rheumy, check you over.
 
Hello,

to respond to the initial comment: I do not think that ALS symptoms change during the day once they have set in. I believe that once a body part is paralyzed, it remains in that state. However, prior to actual paralysis, I was under the impression that there are better and worse days. By this I mean that symptoms or weakness in that case, may appear more significant at certain times. In my case, I noticed that I have more stiffness in the mornings but that it eases up after an hour or so. This is what led me to ask this question.

I also wanted to share that I went to a neuromuscular clinic recently and that the neurologist performed a standard neurological exam and an EMG on both of my legs. The neuro exam was normal and the EMG showed polyphasic re-innervation in both legs. He concluded that given the normal neuro exam, no clinical weakness and my history, there are no chances in his opinion that what I have is ALS. He believes that it is something coming from my spine, more precisely the lumbar area. I will be having another lumbar MRI to look at stenosis, disc degeneration and so on. I do have some mild pressure on the spinal cord from discs in the cervical and thoracic area and a small (tiny) syrinx in the cervical area too. The reason for sharing this is that for the past 3-4 months my life has been miserable because of fear of ALS. It has affected me to an unimaginable degree and had a huge impact on my family and my social life. I have a hard time accepting the neurologist's concludion that this is not ALS and I am getting some psychological help for that. If anyone has a similar problem accepting "the good news" and has found a good way to get ahead of this mental game, please share it with me.

Best Regards, Matt
 
Matt, I had trouble enjoying the " good news" as well, because I just wanted answers and got to the point that the search had made me so depressed that ANY answer was welcome. I was beyond caring what the answer was. That was the psychological issues talking, so I understand. I too took myself off for help and after 6 months of therapy, my life was turned around. Finally after 3 years of tests, I got a diagnosis, be it, provisional. By then I didn't care what the name was, just how I coped with the day to day challenges. I am still like that, never been happier. Sure I have no Butt left , but hey.............things could be worse:)

I am so very glad to hear you do not have ALS and have got a better grip on your life. Great story. I wish you the very best and have a lovely Christmas next week.
 
I'm glad for you too Matt. I wish you good luck in your long and healthy life. Enjoy! It's good your gettong some counsiling.
 
Notme, you're too funny... but Matt, I would further investigate the positive band on your Western Blot test... check out the book "Cure Unknown: Inside the Lyme Epidemic" for info on what she did to get rid of her lyme that kept coming up negative. Basically you want to go on antibiotics to "kill" the bacterium, so they then can be picked up by the Lyme tests. I really thought I had lyme, not ALS even after my diagnosis, but it was not to be. And Lyme can be a killer, causing all kinds of neuro problems among the rest of the stuff. Go to the Lyme boards and see what advice they have, I'm not on those anymore.

Merry Christmas!
 
Frankly, Matt, I have no sympathy for someone who can't accept good news and I think you are a spoiled and presumptuous twit for making a post like you just made. And anybody that gives one lusty crap about helping you deal with your "problem" is far more generous than you deserve. What you deserve is to be ridiculed, scorned, and ignored from this point forward.

Honest enough for you, Matt? Grow the h*ll up and quit being such a whiney wimp.
 
And a Merry Christmas to you too Tr. LOL.

AL.
 
Matt, I do understand how you feel, it took me 3 nueros (and alot of kicks in the behind from Tr) to convince me that I did not have als, but please remember, these people on this board have als, and I am sure that any one of them would be thankful to have someone tell them that they did not have it. I feel like a idiot for not believing the first neuro (and the kind people on this forum) and wasting the time that I did putting my family through the hell I did. Go on with your life and be thankful for your life that God has given you. You don't have ALS! Put things in perspective for yourself and have a wonderful holiday with your your family.
 
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