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Cmishh

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Oct 6, 2016
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Reason
Learn about ALS
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00/0000
Country
US
State
MI
City
Detroit
Hello,

About a month ago I posted something here asking some questions about an EMG I had done to address some twitching in my calf muscles for the last 10 months or so. At that time a few thoughtful and well worded replies helped to put my mind at ease for the time regarding the EMG confirming what were deemed 'random fasiculations in couple of muscles'.

So it was advised that to be prudent I should go see a neurolgist and possibly have upper EMG done as well and have a standard physical exam that neuro would do. So I have since done this and have thrown myself right back into just an awful place mentally. As my subject of my message states I have been a long time sufferer of health anxiety, I have diagnosed myself with many a fatal disease from random symptoms and an internet search.

I say this here now because I feel in some ways I am at the edge of a very slippery slope and want to try and get some reassurance/advise from folks here. Even if it is to tell me to get the hell of the internet which I will be the first to tell you is my problem. I do go to therapy regularly and take meds to try and help w this anxiety.. this particular episode has just been a long and hard one.

As to the physical issues. I have been 'searching' now for sometime for possible cause of what I have described over last few years as general slow decline in how I feel overall. Particularly after exercise... it is an extreme fatigue issue that I get after the exercise. Muscles fatigue easy also during and often shaky.

The whole ALS obsession didn't even show up on my radar until last year when this twitching started. And I searched it out online to find all ALS hits to come back.

I have had no weakness, or at least weakness that I see described in these forums. I have been described as extremely stiff by ortho doctor and muscles are often very stiff and rigid despite stretching.

Over the past couple of months I have noticed a pain/ache in calf muscles.. almost feels as if it is below my actual calf muscles that has me paranoid that this is an Achilles strain from weakening calf muscles. I find myself doing strength tests, looking at them, comparing etc.

So the other thing that has come up in the last couple months is a jaw tightness, muscles tire when chewing sometimes. I have had no slurring or speech or tongue fasicularion. I did have some facial numbness the other day but that's about it.

So I had this neuro appt and everything he did was normal except he said there is some sensory loss in toes from tuning fork test he did and that my reflexes are borderline brisk. He did a bunch of blood work cpk, was normal, tests for gravis normal, only thing 'off' was parathyroid .. was actually happy to hear that as the 'sensible' side of me has often thought this more of a metabolic thing than anything else.

But I have been tested for several things by pcp that always come back clean. So even this neuro was saying that based on the tests he did he didn't think it was along the lines of MS or something like that and perhaps is more of a metabolic or possibly even something in upper spine causing twitching in legs. So I am getting an MRI on cervical spine and he still wants to do upper EMG that I am scared to death about because now in the last few weeks I get random twitching in either bicep.. definitely not a constant thing and very few and far between.

So going all the way back to what I said in the beginning as to being on a slippery slope. I'm scared. I'm scared to get this done and have him find more fasiculations which will only keep something like ALS on the list of possibilities.

I'm looking back on what I'm writing here and I'm sorry for all this rambling. I guess to sum up what I'm looking for is this (and I know no one can speak in absolutes and no one here are Docs etc.)

I have had twitching in calfs for almost 10 months with no other real issues except the new ache/pain in the calves.

I have twitching now that seems to pop up here and there in arms stomach, thighs.. no weakness to speak off. If anything I would say there are more times when I am 'feeling' things.. burning, aching, tingling.

Wouldn't odds say that after this time of twitching I've experienced that I would have some weakness? I mean I just ran for 30 mins on treadmill and do weights a couple times a week and haven't noticed anything other than the running is harder now with this calf pain strain stuff..

If there is twitching and fasics when he does upper EMG Monday does this put me a step closer to ALS? And with this mouth tightness and chewing fatigue.. isn't it a one of the other thing as to bulbar onset vs limb? Like ALS doesn't start both ways. I'm just afraid Now that I've opened up the can of worms with seeing the neuro that I'm never going to be at ease as ALS will never be completely ruled off the list of possibilities.

On the flip side, come Monday when I get this upper EMG and there is nothing on it will that mean I can stop worrying for the time? Again, the whole reason I'm at this point other than being a complete head case is that I had a lower EMG that had a couple of +1 fasiculations in calves that were described as random.

Ugh... I'm so sorry to ramble like this and understand this may not make sense. I have just gotten myself into such a lather about this and I am trying anyway I can to try and snap out of this ALS obsession.

Any input would be welcome but also understand that I am way all over the map here too.
If I can answer any questions too let me know.
Thank you.
 
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Twitching means nothing.

Let us know the results, but until then we can't add anything really as you don't have any symptoms of ALS. We do have a post at the top of this forum section titled READ BEFORE POSTING that I directed you to last time, it may be worth a read now.

I know you are highly anxious, and you have expressed it, now you need to stop writing these huge posts here and just come back with your results. Our PALS who are totally paralysed and use their eyes to operate a computer can't go through these long posts.

Best of luck
 
Thank you Tillie.
 
Based on what you've written, the 2nd EMG is a complete waste of time and money. A couple of fascics on the first EMG means nothing.

Since you have a hx of health anxiety, perhaps you know intellectually what you need to do to "snap out of it" as you say you want. Find an activity that takes you outside yourself, outside the cheat that your life is when you are anxiety's slave. It could be feeding the hungry, building a house, walking in the woods, a Pilates class. Live the healthy life that most here would do quite a bit to have back. Above all, don't read about ALS. And don't post here again unless someone with a medical degree tells you that you have ALS, because you don't.

Best,
Laurie
 
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