Old 06-21-2017, 03:35 PM #1 (permalink)
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Default Worried about ALS

Hi all,

I've been refraining from posting as I don't want to seem like another hypochondriac that's asking dumb questions. However, due to my symptoms increasing in intensity and spreading to different parts of my body I thought I might as well post and get some feedback as I'm going through the several-months long process of figuring out what's going on. I'll try my best to list symptoms in chronological order. First my background:

I'm a 22 year old male, no history of ALS in family, although there is history of other neurodegenerative disease like Alzheimer's and Parkinson's. I've been a runner most of my life and been in pretty good shape up until college when I didn't have the time to workout as frequently.

Symptoms

March/April 2016: isolated twitching in right tricep. The twitching was on and off for awhile -- sometime multiple days in a row, and sometimes with weeks in between of no twitching. It would happen sporadically throughout the day, sometimes for up to an hour at any given time. No twitching elsewhere.

April/May 2016: I go to a physician at the campus clinic because the twitching is still happening. She does a clinical exam and orders blood and urine tests, everything is normal. Refers me to a neurologist (specifically a neuromuscular specialist).

Summer 2016: Go to neuro. Neurologist is very dismissive, presumably because of my age (I don't blame her, my only complaint is twitching at this point and I'm only 21 at this time). Orders another blood test, which shows elevated CPK, blood urea nitrogen, and aldolase. They are only *slightly* elevated so she isn't too concerned. MRI, EEG are normal.

August 2016: follow up blood test, everything is normal. However, twitching is now all over my body at this point. Schedules an EMG/NCS for December 2016.

November 2016: Notice a dent in my right thigh; couldn't tell if it was atrophy or if I had a lump. Get an MRI of the area, says everything is normal (including muscle bulk). Strange because I can clearly see and feel something, and so can others.

December 2016: EMG and NCS are normal. EMG is only on right side. Diagnosed with benign fasiculations, schedule a 6 month follow up. Forget to mention the dent to my neuro

May 2017: I switch neurologists due to problems with the previous neuro. Blood test shows everything normal except mildly elevated sedimentation rate (a measure of inflammatory/immune response) but the neuro didn't seem too concerned. Normal clinical exam, including negative Babinski on both sides. He took measurements of some of my muscles where I was concerned about atrophy, and they were mostly symmetrical except for a few centimeter difference; he said he will measure again at our follow up to see if there is any change. Scheduled second EMG for August 2017, follow up visit in September 2017.

What's been concerning is that between December 2016 and now, I've noticed what appears to be significant muscle atrophy that has becomes more pronounced over time. It's mostly notable in my thighs and forearms, and seems to be pretty symmetrical (which is strange).

Additionally, daily feelings of stiffness in my lower back/neck, choking more frequently, out of breath more easily, cramping in feet hands and forearms, biting cheeks and tongue more frequently, and what appears to be wave-like quivering in thighs that is ONLY noticeable if I am applying force (such as if I'm sitting and push my leg into the floor). Another weird symptom is near-constant (I've had at least one episode a day for at least a few months) "mini-hiccups" that are especially prevalent after I eat. I call them "mini" because they aren't large enough to make the characteristic noise. Sometimes they're accompanied by really bad acid reflux. I can also occasionally induce clonus in my left foot if I angle it a certain way, especially after a long day or after a few drinks; my second neuro says it's not a big deal, as many people can have that and it means nothing. Also occasionally have weird jerk-like movements, and right as I am about to fall asleep I occassionally wake up gasping for air (this is in that limbo zone between sleep/wake, never after I've been asleep for awhile).

I'm attaching a few photos of my right forearm for reference.

I'm sorry for the long-winded post, but I wanted to make sure I got everything out there. Ironically, I just graduated from university with a dual emphasis in neuroscience and population health and worked in a neuroscience-based research lab; so part of me is thinking that because I am very familiar with the worst case scenario, my mind automatically goes there. Despite my potential hypochondria, it seems as if there is definitely something wrong, the question is just what at this point. Thank you in advance for your help -- this community continues to amaze me with its strength and energy.
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Old 06-21-2017, 04:37 PM #2 (permalink)
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Default Re: Worried about ALS

With your neuroscience background, no doubt you are aware that RLS/PLMD can manifest during the day as well as in sleep for some people. Have you been screened/had a sleep study? There are also relationships with iron and Mg levels [that standard blood tests don't get much of] so worth an empirical one-at-a-time supplement trial. K and Na in your diet may also be worth tinkering with on a controlled basis, and can also feed into reflux. And lastly, of course, there are the B vitamins.

You mention having run a lot in the past, and some people exhibit greater changes in musculature during periods of disuse.

Bottom line: we don't see any red flags for MND, but you have symptoms worth exploring/treating so I would pursue some of the above self-care strategies and primary care management as well.

Best,
Laurie
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Old 07-14-2017, 05:38 AM #3 (permalink)
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Default Re: Worried about ALS

So I had my follow up EMG about two weeks ago -- good news, everything was normal! The neurologist even tested in specific areas where I thought I noticed atrophy (except only on the right side), and everything was fine. However, she did notice the atrophy itself. She's not the neurologist that I have been regularly seeing (that was my first time with her and she just performed the EMG/NCS), and she told me to bring it up with him when I see him next two weeks from now.

So, while I am significantly less concerned about ALS, I'm still wondering what could be causing my symptoms -- especially the twitching and atrophy (aren't these tell-tale LMN signs??). What other conditions that might be causing these symptoms that I might be able to ask my neurologist about? And what other questions should I ask him to cover my bases in the follow up? Thanks so much again for your time.
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Old 07-14-2017, 01:16 PM #4 (permalink)
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Default Re: Worried about ALS

At this point, I think you'll agree there is no ALS going on, and no reason to suspect you might develop ALS at all.
You described classic RLS. I started that in college. Even a small drink will trigger it. It happens to me whenever I relax, such as bedtime.
To control my RLS, I simply didn't relax for 30 years. Thank God somebody invented Pramipexole, but I still never really relax myself. I miss that feeling of "ahhhh" just before sleeping.

Twitching: Some people do it, some don't.
Atrophy: Can't really diagnose over the Internet. Follow up on that, but remember that our bodies are pretty dynamic. Could very well be nothing of worry. Good luck.
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Old 07-14-2017, 02:50 PM #5 (permalink)
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Default Re: Worried about ALS

achurchi, I know about Split Hand Syndrome and or hand atrophy.

The web between your thumb and first finger looks fine. The right side of your right hand (from little finger to wrist) shows no atrophy.

I'd say you can delete that concern off your worry list.
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