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Matt G

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39 y/o male, veteran, with neurologist documented muscle atrophy, fasciculations, and hyperreflexia.

- No plantar reflex whatsoever
- All blood tests normal except Vitamin D at 12 (with 30 being the lower limit)
- MRIs this coming Wednesday (brain, cervical, and thoracic)
- EMG scheduled for February 08


Greetings,

Thank you for your time and assistance! Many apologies for the length of my post; I realize it is a massive wall of text that may be difficult for many to get through. The bulk of my symptoms (that I noticed) started in October 2015 if you’d care to skip ahead:

- 2014: Extreme cramping in calves. Ribs/shoulders started feeling crunchy and started popping whenever I moved.

- Jan 2015: Rear ended in a car accident. Had whiplash with electrical shocks that ran down both arms for over 8+ weeks. Numbness in both arms and head/scalp when laying down that persisted for months.

- May 2015: Twitching in my shoulders and shins. I chalked the upper body twitches to the recent accident, and the lower body ones to previous L4-5 surgeries (2005).

- June through Sep 2015: Fasciculations now body wide. Increasing exercise intolerance. I also noticed my left collarbone was starting to stick out, but since I was actively working out and trying to get in shape, I didn’t worry too much about it. Overall though, my body felt like it was falling apart. Cognitively I began to feel like I was dissociating at times; when walking down stairs I would feel like I was about to fall through the floor.

- October 2015:
I felt like I was getting the flu for 3+ weeks, but it never developed into that. Extreme night sweats. Right foot and right hand started cramping up. All my facial hair started falling out.

- November 2015:
Another car accident, this time somebody front ended me, and left me with whiplash (again) and pain in my ribs. Fasciculations continued, my right hand continued to cramp, and the pads on my feet were really starting to shrink. Started getting wiped out by simple things like grocery shopping.

- December 2015:
My hands and feet were now visibly smaller, both collar bones were sticking out, and overall it looked liked I had only 1/3 the muscle mass I used to. Every time I would use a muscle and then rest, I would have both unseen twitches and visible fasciculations. Additionally, my tendons/joints kept popping everywhere, and simple fine motor tasks were becoming more difficult.

- January 2016:
My muscle is wasting away extremely fast. It seems to be mostly symmetrical. My skin has become really loose now since nearly all of the underlying adipose tissue and muscle is gone. My limbs are becoming extremely boney. My fingers, hands, arms, and legs are now having massive spasms that contract. I have no energy, diminished balance, and I keep walking into door jams and dropping things. My knees feel like they have strings connected to them when I walk, as I tend to get bouncy at times. Everything is becoming progressively harder to accomplish. My thighs are sticks, my shoulder muscles are just about gone, and they seem to be deadening. Often when I go to move my arms there is a noticeable delay between thought and action, and it’s getting worse. It seems like I’m about to lose use of my right shoulder altogether. Additionally, my cognitive dissociation is increasing, and I have this persistent feeling of a mind/body disconnection.

The rate of my decline from December to January is astonishing. I’ve read in multiple posts that the atrophy only begins after a person loses their ability to move a muscle set, while in my case, the atrophy seems to be raging through me like a wildfire. Do my symptoms/progression seem congruent with your ALS experience? Thanks again.

Regards,
Matt
 
Going through your list, one by one, I thought: Holy Crap. This guy's got a lot wrong with him.
And never once did I think that ALS had anything to do with it.

Did you read the sticky post stuck to the top of this subforum titled "Read Before Posting"? It will answer a lot of questions about your symptoms and how they're not ALS.

ALS is a brain disease that affects the Motor Neurons of the Voluntary Nervous System. ALS destroys these nerves, one by one in serial fashion, so that the nerve can't send the "go" signal to its corresponding muscle. So your foot or hand muscle doesn't contract, so you fall over or drop things.

It doesn't hurt, burn, feel fatigued, or feel weak. The muscle just doesn't go. Eventually, over the weeks or months that the muscle has been lying limp and useless, paralyzed, then it atrophies.

You don't feel anything in your brain either. No disassociation.

You've got something, but you didn't describe ALS. Good luck with that EMG, and don't forget to use use your VA benefits. You earned them.
 
Thank you for the reply. I hope you're right!!!

I have read the stickies, and spent over a month researching everything contained within (to the best of my ability at least). In case I gave the perception otherwise, my muscles don't hurt, burn, feel fatigued, or otherwise -- they're just rapidly shrinking, and my function is continuing to diminish. The pain that I do have is from joint pain, or from when a tendon pops over bone. And I'm increasingly feeling exhausted from trying to perform simple tasks.

From watching some of the PALS videos on YouTube (like Kevin O'Donnell), they mentioned how they had decreasing utility before they had total loss of an extremity. The sticky also states:

"It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone."

That's what had me especially concerned. I feel like my actions are increasingly being performed by remaining accessory muscles. My shoulders/arms seem like they are becoming slower to respond to my brain's request to move. I don't know if this is a primary neurological symptom, or if it's secondary to the atrophy. Hopefully the MRI will shed some light on the cognitive issues as well. After my MRIs and EMG, I'll post my Neuro's diagnosis in case somebody else has had similar onset (of whatever it is I have).

I'll make sure everything's up to date with the VA on Monday. Something's definitely wrong with me, and it doesn't appear to be slowing down. Thanks again for insight.
 
I have a little different take than Atsugi. My husband started with calf cramps at night, trouble gripping a golf club and fatigue after golf, fasciulations in one arm that seemed to spread quickly. The only pain he had was from his nightly calf cramps. He started asking questions repeatedly that I had just answered and he lost his endurance . He was often short of breath. Before diagnosis I saw his legs,butt, and shoulders shrivel. He has always had a very muscled lower half so strength tests are deceptive. His head dropped forward with cramping.

His vitamin d was also low. After all the bloodwork was complete, the emg dirty, and brain scan negative were they able to diagnose him. He saìd he just felt like something was really wrong. He had overwhelming fatigue.

Wait for your doctors to perform their tests and evaluate you. Do not jump to conclusions. In the end if you dont have als you will have ruled out a lot ofother possibilities. And trust me knowing you have this disease sooner than later isnt so helpful.

I assume you are using health benefits thru the va. We have an amazing team at our va. I know others arent so lucky.
 
Btw, one of the differentials was a form of muscular dystrophy that presents in a similar fashion. That is why you need to do your best to be patient with your doctors
 
Has your vitamin d been replaced yet? Some of your symptoms including cognitive , weakness and fasciculations can absolutely be a result of that ( not sure about atrophy). We had someone a while back whose significant other had pretty severe symptoms that were resolved eventually after her vitamin d was brought back to normal

It sounds like your doctors are looking at the right things and there are certainly lots of things on the differential.

You asked whether your experience is familiar. Not like mine. My weakness was first followed by some twitching in that area followed a good deal later by atrophy in that area

Good luck with your testing
 
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