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giantfan

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Apr 23, 2011
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Learn about ALS
Country
CA
State
Ontario
City
Erin
Hi All,

Well, I had promised myself for the longest time that I wouldn't make a post here, and just continue to read all the great information and posts made - especially by all of the regulars! Your insight and time spend to answer the hordes of posts from both those dealing with ALS either directly or indirectly, or those concerned with some symptoms they're experiencing. So I'll begin with my sincerest thanks.

Having been a long time anxiety sufferer (and moreso a Health Anxiety nut) I recently had a bout that is likely tied to a panic attack. Result in a numb face, tingling forehead/scalp, fatigue etc. Long story short, ended up in Emerg because of it combined with a leg that just wasn't feeling "right". That was about a month ago.

A week after the initial visit, was back again with some 'seizing' feeling on the right side of my body. Short version - did a CT scan thought they saw something, admitted and did an MRI (which subsequently came back clear).

A day after the MRI went away with wife on vacation and the first night after a day of walking thru the town had terrible insomnia and noticed muscle fasciulations in both legs and sporadically throughout the body (but constant in calves so long as I was laying down or the leg relaxed). Those have continued to this day (now about 2 weeks later). Very possible brought on by chronic insomnia as of late, combined with the anxiety issues (and just started on Citrolpram a few days prior to their onset so who knows).

Anyhow, my question is not so much regarding the fasciulations as there are a host of posts here regarding them but rather the weakness in the leg.

Is there a clinical visible weakness? No. Can do all the funny little tricks of heel walking, toe walking, jumping up stairs, yada yada - yes. And can do exercises that I normally did until a few weeks ago like skater squats (stand on one leg, squat while the other leg extends backwards - like you're speed skating), etc. But I have feel a continued weakness namely in the quad/hamstring namely when I walk (no sign of steppage gait, or drop foot that I can see). But, what Im curious about is that I have a strange 'nerve' sensation radiating within the knee, thru the front of the quad, into my hip and up my lower back. Almost like a sciatica type, but I can also feel it radiate up the front of my quad into my hip.

I suppose my question would be is there much sensory feeling in nerves with a lower limb type of onset - eg back/hip/knee nerve 'pain'? Or is it basically pain/ache free and a slow loss of ability? And I'm not referring to perhaps secondary issues caused by an erratic gait like a high step or some type of compensation for an underfunctioning muscle. I'm watched my gait closely and really can't see an issue, and during individual muscle group activities can't seem to find one that isn't behaving the way I'd expect.

I do have an EMG slated for June 3rd (oh the joys of waiting) lol.

My continued thanks to the wealth of information you folks share here. And should it be something that's in the cards I'm dealt, I'll be grateful to have a place for me and my caregivers to seek/share help.
 
Oh I'll add: 40 year old male

Why does everything start to fall apart at 40? Didn't even have a GP until the last year, now I need meds to start me up in the morning and turn me off at night lol.
 
It's extremely rare for ALS to have any sensory issues at presentation. Your symptoms do not sound remotely like a MND. With the radiating pain it would be more likely to be a mild . The EMG will help determine if it's a radiculopathy. I am surprised that with so little to go on, they are even doing an EMG. Too much money in USA? Lol

You can relax, you sound pretty healthy to me. Just be patient and keep off this website. Oh and I have has fasciculations 24/7 for 4 years now. They are benign. If they were not then my muscles twitching would Long ago have withered and died
 
Hi Alyoop,

Sorry, I hope my question didn't appear trivial or ill-informed. The two weeks of twitching wasn't the kicker after doing all the reading here and on other sites, but the thigh 'weakness' was playing games. Eg leg feels heavy when walking and raising knee for initial stride, but it's the nerve sensations that coupled with it that made me finally post.

I suppose I was just trying to see if the nerve irritation was something that could accompany a weak limb, or if I'm just buggered something up in my lower back. And I'm sure the 1000 squats and leg raises I did in the past few weeks, plus the constant focus on the limb only add to the issue.

I appreciate your response. EMG slated for June 3rd, and from what I've read here no one would wish it on their worst enemy lol, so it should be an experience.

BTW, Canadian healthcare lol - tax dollars hard at work. It was the internist at the hospital that ordered it (more to rule it out) and has made an appt pending clean results for a muscular clinic or something that looks at electrolytes in the muscle somewhere in London, ON. When I told my GP they arranged a EMG he said "REALLY?" and was "well, ok, guess it won't hurt" but then proceeded to order me a spinal MRI (think 3 month wait here in Ontario).

Anyhow, thank you again. Will advise of any EMG finding to seek further advice if they're warranted.
 
The spinal MRI is a much better idea :) you are not in the least being trivial. It is hard when our bodies throw us a bender. I see now you are from Canada. We have the same health system, but you would wait a year for non urgent MRI and not get the EMG, so yours must be faster!

You will be experiencing muscle fatigue rather than weakness. That would point to a radiculopathy as well.
Best of luck
 
Sounds like you did something to a disc that is causing radiating pain. If you can do that kind of squat--trust me, there is no weakness.
 
"And I'm sure the 1000 squats and leg raises I did in the past few weeks"

Not to be disrespectful but you are actually asking if you have ALS after saying this? Really? I don't care if your whole body is twitching from the tip of your toes to the top of your head, if you can do 1000 squats and leg raises it isn't ALS.

Good luck with figuring out what it is.
 
Is there a clinical visible weakness? No. Can do all the funny little tricks of heel walking, toe walking, jumping up stairs, yada yada - yes. And can do exercises that I normally did until a few weeks ago like skater squats (stand on one leg, squat while the other leg extends backwards - like you're speed skating), etc. But I have feel a continued weakness namely in the quad/hamstring namely when I walk (no sign of steppage gait, or drop foot that I can see). But, what Im curious about is that I have a strange 'nerve' sensation radiating within the knee, thru the front of the quad, into my hip and up my lower back. Almost like a sciatica type, but I can also feel it radiate up the front of my quad into my hip.

I suppose my question would be is there much sensory feeling in nerves with a lower limb type of onset - eg back/hip/knee nerve 'pain'? Or is it basically pain/ache free and a slow loss of ability? And I'm not referring to perhaps secondary issues caused by an erratic gait like a high step or some type of compensation for an underfunctioning muscle. I'm watched my gait closely and really can't see an issue, and during individual muscle group activities can't seem to find one that isn't behaving the way I'd expect.

You've answered your own question in these two paragraphs. Your muscles are behaving correctly, so it's not a problem in your motor nerves. It's a problem in your sensory nerves, at least as far as your lower body is concerned.

It's extremely rare for ALS to have any sensory issues at presentation. Your symptoms do not sound remotely like a MND. With the radiating pain it would be more likely to be a mild . The EMG will help determine if it's a radiculopathy. I am surprised that with so little to go on, they are even doing an EMG. Too much money in USA? Lol

It's called "defensive" medicine, Aly. Better to subject the patient to unnecessary tests so that the doctor is covered against a later claim of malpractice.

"And I'm sure the 1000 squats and leg raises I did in the past few weeks"

Not to be disrespectful but you are actually asking if you have ALS after saying this? Really? I don't care if your whole body is twitching from the tip of your toes to the top of your head, if you can do 1000 squats and leg raises it isn't ALS. luck with figuring out what it is.

Maybe it was the 1000 squats and leg lifts (and the other exercises our energetic friend obviously does) that caused the twitching in the first place. ;)
 
Sorry BG & Trfogey I in no means ment to come across as 'hey I feel like iron man, could I have ALS'...

Please let me elaborate.

The countless single leg squats has been out of an obsession with the leg and perceived weakness of it. Just like standing on the stairs and doing calf raises to 'test' the leg, or balancing on the one foot, or heel-toe walking etc. I know that it's entirely the wrong thing to do, but when obsession over a limb grabs hold it because such a focus. It's entirely possible that the hip and knee pain is due to over-exertion of the limb.

Again, by no means was I trying to say "look at all that I can do... do I have ALS" - I've read enough here not to post such an insensitive question, and it's obvious my wording came out poorly. My question was more towards deteriorating weakness and any sensations accompanying it.

I've relaxed (or attempted to) the obsessive 'exercises' on the right leg (although I have this constant urge to 'test' it), but I find my initial steps with that leg to be quite 'heavy' and find after 20 strides or so the leg needs a break for a few minutes as the thigh feels quite exhausted by that point. The 'stength' appears to be there in isolation, but the weakness seems to be felt as rapid fatigue (if that even makes sense).

I apologize if I focused or highlighted the sensory issues too much. I suppose I was trying to seek better understanding of how 'weakening' muscles behave. I read experienced where folks start tripping over things, or a family friend's father had just one day discovered he couldnt raise his foot (foot drop) while chopping wood out back. Was trying to understand if the 'weakness' was a progressive feeling in a leg with lack of energy/fatigue until finally inability, or is there basically no sensations/awareness and 'bam' suddenly 'hey, why can't I do that'.

Eg right now walking around the house the leg feels quite heavy and laboured but at the same time like there's some nerve issues being felt (hence the initial question regarding and 'nerve' type sensory feelings experienced with a 'weakening' of a muscle area).

Combined with the 24/7 fasciulations in the calves/ankles/feet which started the same day 3 weeks ago plus sporaditic ones in the arms/shoulders/hands/etc, I've had a tough time keeping weight on and been eating like a monster just to maintain, cronic insomnia, and have developed 'brisk' knee reflexes which previously were not present at the end of March (although some medication could be causing those).

Anyhow, please excuse any offense I had made. Was certainly not my intent, and I think just doing to poor phasing of my question/issues.


Thanks.
 
When you think of weakness, think of an inability to do something--

That skater squat you mentioned--would be impossible to do with ALS.

Honestly, the first thing most seem to recognize when they seek an diagnosis of something is they can no longer do something they once did.

I noticed I couldn't push my door locks--not it was hard to do--or that it felt funny--I literally could NOT do it with my left hand--and a year later, still can't.

In your case--the list of things you are able to do point away from a serious neuromuscular disease process going on.

That said--it doesn't mean something isn't going on. You're 40. Things start to go. Back muscles can become strained, which can contract on nerves and make them feel weak. You've overdone it doing all the tests you've done on yourself--but at least they answer your question. With MND bad enough to cause muscle weakness-you simply wouldn't be able to do the things you do.

And, yes, people here with ALS, some, can still walk and do things like that--but they might have first noticed they were falling. Or tripping on carpet--things like that. The weakness in my legs that I noticed first was an inability to get up from a squat (I use a squat as part of my teaching in my Nursing Assistant classes) I found that i had to use my arms to get myself back off the floor. If I fall, I absolutely can not get up with help.

As others said--sensory things are a good sign that it is something else going on, luckily.

I haven't been diagnosed--but the first things I was sure of was inability to do things I'd done before with ease.

Let your doctor do their tests if you need reassurance.
 
Thanks Notme,

I appreciate your input and your experiences.

Health Anxiety is a real b***h, and the wonderful wide web only helps to provide the fuel. But at the same time, thankfully, provides great resources like this site to learn from.

We'll see what the EMG holds in June, and again I thank you for your help. At the least, I've heightened my awareness of this disease and the importance of helping those trying to find a cure/treatment and at the worst I've found a place caregivers and myself could go for help should it be in my or a loved one's cards.

Hopefully there will be another ALS Walk in Orangeville this year and I'll be able to help support it some way. I know that a BIG contributor to this forum is a very prominent figure in the organization there.
 
June 4 is the Orangeville Walk at Island Lake Conservation Area. Register 8:30 5K walk at 10.
[email protected]

AL.
 
Thanks Al! I was checking online to see if a date had been posted yet.

Coincidentally, I'll be having my EMG 24 hours prior just up the street at Headwaters.

I'm 'supposed' to go fishing that weekend for the opening of bass season, but I guess that'll depend on how my EMG goes lol.

Regardless as to in person, or via contribution, you'll have my support. Thanks for the email addy, I'll drop it a note this week and ask how one can contribute.


Thanks for all of your posts, I've learned much from each of them!

For now, chow from sunny Erin :)
 
i realised one day i could not lift my foot up and was dragging it along with my left lower leg.
i thought it was not good but did not give it too much attention as i was very ill at the time but others took more note.
on my first neuro exam my neuro noted clinical weakness but it was some weeks later my gp told me my leg was clinicaly weak.
i was like "oh ok,so thats why its not been working right"........ignorance really is bliss.
and no ,you sound like you have no weakness at all.
 
Relax;

Enjoy, And consider simply staying off the Internet until you hear something from a DOCTOR.

You are exhibiting signs of hypochondria that cannot be fixed by this forum.
 
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