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MANinCT

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I've spent some time looking at some threads, etc. but wanted to pose a question or two.

My issue started a few months ago (Jan) where I was at lunch and a glass slid from my hand which typically I wouldn't think too much about. I then got home and poked around and did some research as I have a friend who was recently diagnosed with ALS so it was on my mind. My friend was in his 40's. I'm not saying I'm a hypochondriac but I started to notice a pain in my right arm and I do have some twitching in my legs (both) and just had one in my shoulder. So here's a few questions that maybe will help me get things into perspective.

1) I have looked at a few websites and see that the occurrence of ALS in anyone is 1 or 2 in 100000 but other websites go as low as 1 in 1000 which are still pretty low. Do you have any idea of why there is such a disparity?

2) From reading the posts, I see you have twitching as "nothing to worry about" as it's common. However this is also one of a few initial symptoms of ALS with clinical weakness. Does that mean that, for example, I can't pick up a coffee cup or do a toe raise (meaning clinical weakness) that I should be concerned? I guess what I'm asking is that you're saying twitching is something that I would have after the muscle dies so I would definitely know that my muscle has died and then get clinical weakness and then get the twitching. I read that twitching is seldom if ever the initial symptom of ALS.

3) I see that in your posts that many people explain all the symptoms to you and you come back with very definitive ("its not ALS") or something on those lines. I tend to trust people who have been through this or are going through it more than some web site that just spits our stats, etc. but just wanted your take on how you can be so definitive on these type of things. One of the reasons I ask is that other websites specifically say that symptoms are pretty subtle to start and may not be noticed whereas the people here state that its more black and white and words like "you would know if you had it" . This is confusing to me so I apologize if I'm misreading it.

4) I know this is a dumb question but I have to get it out there. So this first issue that came up was back in Jan of 2016. Wouldn't there be some type of progression over 4 months or so that would make me sure that something was wrong?

I had my physical with my MD last month and he did strength tests like a neuro would do where you press down on his palms and toe walk, etc. and he didn't mention anything to me. I emailed him last night and he says its very unlikely as it's such a rare disease but I'm going to go in for an NCV in a few weeks. Would it be possible to do an NCV and an EMG at the same time?

Thanks for your time, I appreciate whatever feedback you can provide.

By the way, I'm 48 not that it has too much to do with it as I know this disease can hit at any age but from what I've read it looks more like people in their 60's

P.s. I don't really have anyone I can ask about this that has extensive knowledge about this so wanted to real world assistance from you all if you'd be so kind. I do agree that symptoms can magnify by looking at different websites, etc.which I think has happened to me but the twitching thing has be worried at best.

Thank you again.
 

MANinCT

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I forgot about the pain part. Pain is in the latter stages of ALS because why? Would pain be a precursor to ALS? If so, are there specific places pain would occur? For example only on the joints or could it be anywhere.

Thank you again for your time.
 

Nikki J

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The statistics. The lower one is your risk of getting ALS in your lifetime vs in a single year.

Twitching. Yes it is so common as to be meaningless so without clinical weakness ( failure) don't worry

When someone describes their concerns and they sound nothing like ALS we tell them that. The answers it is not ALS are given mostly when someone is reporting normal exams and tests meaning the doctor ruled it out. Or they are so ridiculous and persistent someone gets frustrated.

If something happened four months ago and has neither progressed nor recurred then it is extremely iunlikely to be ALS a progressive illness that does not get better

If the doctor feels an EMG is required and orders it yes it can be done at the same time as an ncs. They often are

ALS is a disease of motor neurons not sensory. Pain in later stages is common because the muscles no longer support the body and put strain on joints ligaments etc.
 

MANinCT

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Thank you Nikki.

2 quick follow up questions. Would I be able to detect clinical weakness sitting here in my house? If so, can you an example of how?

When someone describes their concerns and they sound nothing like ALS we tell them that. The answers it is not ALS are given mostly when someone is reporting normal exams and tests meaning the doctor ruled it out. Or they are so ridiculous and persistent someone gets frustrated.

Does this sound like something I'm doing as I see some people get dismissed and I don't want to be "that guy" that is pumping you for info almost like I'm looking for you to say "yes you should worry"

Thank you again.
 

Nikki J

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Clinical weakness can only be determined by a doctor doing the exam you apparently passed. When something fails ( for example I can no longer stand on my weak leg) there is a pretty good chance it will be clinical weakness but self testing is not a good idea. It will turn you into one of THOSE people. We have had posters self test so much they then developed muscle strain

You are not yet one of those people. Having had your questions answered though , please follow up with your doctor. So far you have not reported anything that sounds worrisome

Good luck
 

MANinCT

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Thank you again Nikki
I read somewhere on here something that was interesting and may help. There was a person who was having symptoms, twitching, pain, cramps, etc. and thought that they had ALS. He got a call and it was a family emergency which lasted for a few hours and all of a sudden he "forgot" about those cramps and pains because his mind was focused on other things other than ruminating about symptoms and trying to match them up to fit a certain illness. He then realized that maybe it was in his head.
 

MANinCT

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Hi Nikki, sorry to bug you again but you said something interesting in your post. You had said I passed the strength test that my GP gave me. Would that be the same kind of strength test that a neurologist would give me to determine clinical weakness or would it involve a more detailed testing (more than physically pushing and/or pulling).

I read that a nearo or even a GP can take a look at you and know there's something up without even testing you but wanted your feedback.

Again, thank you.
 

lgelb

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CT, you're inching into "that guy" territory. The strength tests are pretty similar across specialties, more doc-specific than specialty-dependent. Ping us back when you have test results, but I don't see any red flags in your posts.

Best,
Laurie
 

MANinCT

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Hi, quick follow up to my post and any feedback would be appreciated. So I saw a Neuro this morning and had a full neuro exam. I'm assuming it was as she had my shirt off and doing a lot of poking and prodding. She said she saw not atrophy and had an excellent neuro exam. She had an EMG scheduled for me but I was running short for time as she was late in getting to me in my appointment. So here's my question. I asked her if she thought I needed the EMG and she said she would do it to make me feel better as she saw I was very anxious. She said that the was "fine" not doing the exam as she sees nothing to warrant it. I told her that I wanted the exam but didn't have time today and that I would reschedule it with her. So in your opinion(s) would I be "wasting" my time in going to get it as she said it would most likely come back normal plus she said she worked in ALS clinics and can spot it pretty quickly. Having gone through this for a few months, I'm curious as to your opinions on whether I need to go back or not. I do kind of feel like I'd like to tie up the loose ends but want to be practical also as I know this is expensive. I'm also busy with 3 kids a wife and a job so it's not that convenient.

Thanks in advance for your time.
 

Nikki J

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You had a normal exam. An experienced neuro told you the only reason for doing the EMG was your peace of mind. In other words not clinically necessary in the expert's opinion

If you have the EMG will it give you that peace? What we see here is temporary relief then the questions - was it too soon? Did the neuro test the right muscles? Etc.

An EMG costs almost a thousand dollars on my insurance. The non discounted rate is almost twice that. It is indeed expensive whether you pay directly or your insurance pays.
 

MANinCT

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Good morning, I now have an EMG set up for this Friday. I'm very anxious about it. Not so much the testing itself but more the results, etc.

I have a question for you out there as this has dragged on for almost 5 months now for me.

I'd really like to move on and get back to my life and enjoying things again. I've lurked on these pages and have read more in the last 5 months about ALS than a Neurologist probably has! I know I have a health anxiety and I have actually started to see a psychologist about it. I think he has helped a bit as I feel a little better when I leave there but as soon as my arm begins to get sore or I feel like its weak, I retract back to this malaise of ALS.

So my question as the following. I know you've spent time talking people off the ledge on this site and most of them come to you with anxiety issues that make the symptoms worse so its a never ending cycle.

Other than telling me to stay off this website do you have any other recommendations for someone to just let it go and move on even if you do have a sore arm and you "feel" like you're week. I thought about this and I think the continual strength tests that I'm doing are actually making it worse which leads back to this cycle.

It's funny also is that if I have a few drinks, I "forget" about my arm and just have a good time

I'd like to just wake up one morning and have my head cleared of this but for some reason I get sucked back into this hole

If you have any suggestions that has worked for others, I'd love to hear about it.

The answer to the question about about the EMG being normal will that give me peace? At this point, I don't know.

Thanks for any replies.
 

MANinCT

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In addition to this perceived weakness. I seem to be overanalyzing EVERYTHING I'm doing with my hands. For example, opening a bag of chips or picking up a quarter (or anything) The things I was or wasn't doing back in December when this whole thing hit me I was just going about my day and not thinking of it but it has become the focal point of my life now.

Do you think that starting to take anti depressants would help?
 

WendyWooG

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Hi
I am so glad you are getting help with your anxiety, antidepressants can be helpful it's best to talk to your doctors about that.

In the mean time anything you find that can help with relaxation, hydrotherapy, massages, meditation etc staying away from caffeine. Finally keeping yourself distracted.

I am sure your EMG with sooth some of your fears so good luck, and I hope you find everything easier to cope with soon.

Wendy
 

MANinCT

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Thank you for taking some time to respond to me. I appreciate it.

I'm open to any her suggestions also from anyone who would be kind enough to reply.
 

Nikki J

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Cognitive behavioral therapy is the best chance for long term relief from health anxiety. Discuss with your therapist.

Assuming your EMG does not show ALS - and be aware there are often meaningless little findings that have sent other worriers spiraling down- I strongly urge that you block all sites like this. I would tell you to do so now but I don't think you would even consider it.

There are 2 recent threads here by people who have gone through extended anxiety.( Teedot and Jamesdoe) Please read them and take their advice
 
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