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matty22

New member
Joined
Oct 10, 2012
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
ON
City
Welland
Hello Everyone,

I'd like to start in advance by saying thank you to anyone who takes the time to read and/or respond to my post/question.

Like many others who have come and gone, I have been experiencing worrisome symptoms for some time now and finally have decided to get some input from others familiar with such symptoms...also more information that needs clarifying has come into the picture.

So here goes everything, I am a 22 year old male from Ontario, Canada who started to experience symptoms around April 2012. Symptoms include body wide muscle twitching, muscle weakness/wasting, fatigue, lack of motion in limbs and cramping. My weakness is real, I do/did not have 1 localized area of weakness (i.e. foot drop, can't turn bottle cap or button shirt) but some parts of my body are weaker than others. I can no longer work out or run (things I use to do on a regular basis before illness started). My right hand shakes when just filling a pot of coffee with water. My left leg feels extremely weaker than my right and feels like it is going to give out while walking but like I stated no actual falls yet. I do walk a little funny now and running isn't even an option anymore (produce a weird, unstable gallop motion). I can raise up on both toes and heels but only for like a second and the left gives way a lot quicker than the right.

Fast forward to now, I finally got to a neuro today (Oct.10th 2012) for a consult and ncv/emg. Upon consult, the neuro stated he noticed clonus, global brisk reflexes (both seemed worse on left side though, especially for feet/legs) global muscle loss (worse on right side and im right handed...) but also stated hoffman's and other neuro signs were negative. The ncv turned out normal. The emg was then done on my left leg and left arm (one sided and my complaints were multi-sided but he said it should show anything bad like ALS either way). After the emg was complete, he advised me the emg in my calf showed fibrillation but no positive sharp waves or any other bad signs. He then stated my thigh was normal. He then advised me the emg on my upper arm was normal. Then he advised me the emg in my hand showed larger MUP's but he said he felt this was due to an old injury to the hand/nerve, although I don't recall ever having one.

After the testing was done, he advised me he did not think anything like ALS or anything of that nature was going on but didn't give me much input on what could be causing the findings of his tests or my symptoms. He said his best guess due to the generalized muscle loss/fatigue would be something post viral maybe but if things keep getting worse to come back?

I know in advance a lot of people are going to think I'm a scared kid who came here for no reason and should listen to the neuro and go on with life but that is the thing, I can't go on with life, my body physically won't allow me. I try to run, or do push ups and my legs/arms give out and don't allow me. I am someone who avoided doctors/hospitals my whole life until now and was always out doing something. I hate more than anyone being ill for so many months with no answers, and not being able to be my physical old self.

I guess in the end I'm just here for some feedback and maybe a couple answers that I didn't seem to get too clearly from the neuro. Some things that keep running my mind are...can post viral symptoms really appear like this and be so debilitating for so long in a previous healthy young male?...What does the fibrillation that showed in my calf muscle mean?...I tryed to find this answer on my own...but I couldn't find anything related to just a fibrillation and no psw or increased mup's. Also, would the neuro even mention coming back at all if he didn't see any significant signs/symptoms?

As stated, I appreciate anyone who takes the time to read my post and any responses given would also be appreciated, weather it be with personal knowledge, experience and/or opinion...anything at this point helps. Thank you everyone in advance and please try to take it easy on me if you are thinking this is nothing and I am over worrying, keep in mind I am extremely young so any symptoms of these sort are going to be extremely worrisome and hard to deal with.
 
matty22,
I'm in St. Catharines, so if you need, I'll give you whatever support you need.

It seems both odd, and a relief your neuro would not be overly concerned.

On one hand, your symptoms sound scary, but on the other, your neuro is a trainned professional with years of education on neurological disorders.

The fact that you are only 22 makes rare ALS even a rarer reality.

If the neuro isn't giving you the answers you need, go back to your GP and ask to be refered to a different neuro for a second opinion.

Good luck to you, not sure what's going on, but I would take what the neuro said as a positive response as far as your ALS fears go.

Cheers,
Casey
 
Hi Matt,

Welland is a nice little town.

For starters, the most notable item in your post, which of course caught my attention, is that the neuro does not suspect ALS. How great is that? I am not qualified in any way to comment on your questions, so I would urge you to return to your GP for additional information as well as to determine what the plan will be to further investigate and address your concerns. Perhaps a referral to another specialist is in order- perhaps not. Don't give up until you get satisfactory answers. It's your life and your body.

For the record, I don't think you're just a scared kid.
 
Sounds promising that nothing scary is jumping out at your doctor after having examined you. Unfortunately, sometimes the only answer is "wait and see." Take comfort that your doctor does not suspect ALS. You say you've got weakness and wasting, but if those things were due to a motor neuron disease, everything I've read here says that EMG of yours would have been all kinds of dirty. Since the EMG was pretty much unremarkable, that's a good sign. Good luck and keep us posted. In the meantime, focus on things that interest you - hobbies, your friends, activities you're still able to do and follow your doctor's lead -- he isn't worried you have anything too dire going on, so you should try not to worry, either.
 
Hi

Ok, I'm sorry, but if he noted UMN issues and muscle loss, then I'd be wanting a reason why. While the EMG would seem to lead away from ALS, it seems something is going on.

Something like a trapped nerve would have shown in the NCV. I'd go back to the GP and seek a second opinion. while ALS isn't treatable, many things are, so it seems as if wait and see may not be the best idea in your case, as ALS doesn't seem to be the issue. Good luck to you.
 
Off to moderation again, sigh.
 
Do follow up with your GP and any specialists he recommends. Your situation is very atypical of an ALS onset (spread all over the body, for istance), but that doesn't meant something isn't causing the wasting and weakness, etc. Keep following up, and feel free to drop us any practical questions about how to get this or that done in the meantime.
 
To clarify my "wait and see" comment, I didn't literally mean take no action. I more meant that you may not get a conclusive answer for quite some time, but yes - of course still continue working with doctors, undergoing whatever tests they recommend, etc. I'm sorry my post was unclear, and thanks notme for prompting me to clarify. :)
 
Hi, Matty22

The short answer to both your questions is yes; if it can happen to a healthy 25 year old female then it can happen to a healthy 22 year old male. It can take a long time to recover from a virus, and it's hard to be patient when you've never had to be patient about something before.

One of the difficulties is that we tend to believe that each and every virus has been researched by scientists and therefore expect doctors to identify the virus they suspect. Our belief isn't founded in fact; there are gazillions of viruses and only a few of them have been researched in any detail.

I do hope that your progress matches that of the healthy 25 year old female I mentioned above, and wish you the best of luck...
 
Hi, I am a new user of this forum and I hope you don't mind me adding to your post I am 49 years old male with two children. Over the past 5 months I have been reading here and what a group of wonderful compassionate people you all are, so I hope you may welcome me.

I have read your story and have a complete understanding of your situation. I am also in limbo, as I started with bad lower back pain which also presented with pain and numbness in my leg. following that I have had an EMG which showed chronic denervation in my leg. At the next neuro visit he ordered a cervical spine MRI, as I have damage in cervical thoracic and lumbar areas (spondylosis.) Neuro also asked for repeat EMG which showed chronic denervation in both legs and my left arm.

My symptoms are muscle twitches all over my body, arms legs and now torso, it feels like worms are wriggling under my skin, other times its a fast firing of any muscle like the tiny electric shocks when having needle EMG, these are mostly visible. Also cramps and occasional overwhelming tiredness.

I have mentioned ALS to neuro but he seems to side step the issue and starts conversation about my spondylosis. What could be going on? not noticed and weakness at the present time and have a few numb patches.
 
Hi Widds

I don't think your neuro was sidestepping the question of whether you have ALS. Your neuro believes that you do not have ALS but you do have spondylosis, which is why he's discussing your spondylosis. That's what doctors are supposed to do.

You have had two EMGs and both of those EMGs show that you do not have ALS. You must realise that no-one here is going to tell you that you do have ALS so why are you posting here? I do think that you should check out the BFS forum because it has a lot of helpful advice for people like yourself. Good luck!
 
MATTY22, be glad you don't have ALS and move on. Don't waste your life wondering about it or surrounding yourself (virtually) with people who are dying of ALS. This is not the place to focus your spirit. Go out and live.
 
Live your life for awhile and see your doctor in 6 or 8 months and re-explore if your sypmtoms or still occurring. If they've lessened then you're getting better and it likely was an injury, if you're worse then maybe your GP can get a better picture of how to direct your care. I worked in health care for 20 years and ALS is an older persons disease. But I've also seen many nerve problems caused by injuries in the young and older that can also make your life difficult, but they don't kill you. They can occurr without you even knowing. You're young, your body may just need to rest. Maybe you were doing too much exerise. Just because your young doesn't mean there are no limits to how you should care for your body and the limits you push it too. Enjoy the snow that's sure to come sooner than later. Karin Bolette
 
Wides, how does,he suggest treating the spondy? The EMG doesn't show the right things for ALS, which is good, but perhaps your spondy. is treatable? Not sure if the BFS site would do much for you personally, as there seems to be a cause for your issues.

Marty, I'm with Atsugi in that you do t need our forum here, but I do think you need some answers. Muscles don't waste for no reason. It's not ALS, which is great. They need to be sure it's viral by ruling out the other usual suspects in my opinion.

Sorry guys, I'm just not one for wait and see when the doc has found issues and doesn't seem to have ruled out much of anything other than ALS when so many other things are treatable. I stick by my 'see the GP again for a referral or next step toward answers' in case this is something treatable now. I'm not a doctor, this is solely my opinion.
 
Mod again, lol
 
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