Progression, old fears, love some advice

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Progression, old fears, love some advice

Postby Tb12 on February 20th, 2014, 8:48 pm

Hey guys, quick update 29 year old male, 15 month full body twitcher, tremors, extreme stiffness and pain, digestive issues and more. I have seen a lot of neurologist whom didn't seem to concerned. I have had 4 emg's, first was a single fibre emg and it was dirty for chronic denervation the next 3 were clean, however I have never had a emg in any area to clear me of bulbar onset. When this all started I was 110 kg and could not exercise anymore I blew up to 130kg due to inactiveness and eating bad due to I would assume depression and hiding my fears, three months ago I decided to go back to the gym, the symptoms I experienced we're a feeling of concrete in my legs after some cardio and tremors while trying to lift weight, lots of joint pain and twitching obviously, calves tight and painful. After pushing through I am now doing weight training and 40 minutes of intense cardio a day! My tremors have died down in intensity and my twitching is not as frequent and I can see I am building muscle in certain areas. I thought this put my ALS fears completely behind me until I googled some stuff and realized that some people with Al's still lift weights etc and my fear of bulbar onset or that first dirty emg reading could be right kicked in. I do have extreme stiffness, joint pain, finger twitches and tremors ( a lot everyday) dull aches and pains in all muscles that seem like they could be cramps but not the full blown Charlie horse cramps. My tongue I bite a lot while eating, it's scalloped and it tires out as my jaw does quick. Does anyone have any better knowledge than me about my fears? After 15 months would I have had something definitely present more sinister if it was bulbar onset etc? Any advice would be great.
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Re: Progression, old fears, love some advice

Postby volfan on February 20th, 2014, 11:18 pm

everything you feel and everything you are experiencing is something every "vet" (I hate that term) on here will tell you is normal...normal for BFS. Having said that, I do understand how for some people (me included) it is hard to understand how the body turns on you and how that can be normal. It is, however, the new normal that you have to get used to. I don't want to say "hey, you are fine. Get over it". I don't want to say that because I never liked it when one of the "vets" would say that to anyone. It almost sounds condescending. So instead I offer "it is something that can drive you crazy mentally until you do accept that it is the new normal and to make peace with it". As hard as that sounds, it is what it is. Take care, Vicki
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Re: Progression, old fears, love some advice

Postby sgupta on February 21st, 2014, 2:06 am

Hi Tb12!

Here's the key sentence in your post for me (and I can so relate!):

I thought this put my ALS fears completely behind me until I googled some stuff

What you're feeling now is just a rekindling of the anxiety. And that can be horrible, but the first thing to realize is that fear of something more serious like ALS does *not* increase your risk, AT ALL, of ALS.

Also, good for you for getting back into exercising and such despite the uncomfortableness. Fighting these feelings is hard, and you've made a lot of progress, so make sure you give yourself credit for that!

Now, to address your concerns (I'm not a doctor, but I've read up quite a lot):
- I can't address your chronic denervation first EMG, as I'm not sure what that means and only your doctor can tell you that. BUT, I can say the next 3 EMG's wouldn't have been clean if it was ALS, especially if the last one was done recently.
- 15 months with no weakness means it's not ALS. Weakness is usually the FIRST sign of ALS, and even in the very rare (as in hardly ever happens) cases it isn't, we're talking weeks to months before it appears. Read through some of the stickies in the various forums on here; even expert doctors who've worked with ALS all their life say that without weakness and a clean EMG at 8 months, it's not ALS (and you're double that).
- In addition, your young age, widespread twitches, pain, and twitching that comes and goes (ie. not getting progressively worse) aren't consistent with something more serious like ALS.

I'd certainly talk to your doctor about bothersome symptoms and see if there are any other tests (things like electrolyte imbalances, for example) you can do to shed light on what might be happening or if you can minimize any unpleasantness, but as volfan said, for some of us, we can't find a clear reason and just have to accept that this can be a new normal (but it can also potentially improve as suddenly as it came for some people).

My advice is to keep trucking with the exercise regimen, live as healthily as you can, and try not to stress about ALS, as from your description and everything I've read, that is NOT a concern you should lose sleep over!
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Re: Progression, old fears, love some advice



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