Old 03-20-2018, 08:22 AM #1 (permalink)
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Default 26 Year Old Male Expecting Diagnosis

Hi, long story, so bear with me.

About 6 months ago I had an unexplained weight loss of about 30 pounds in about a month. I chalked it up to anxiety induced weight loss as I was dealing with some very stressful situations in life at the time and didn't think much of it.

About 4 months ago I started to develop severe Charlie horse type cramping in my calves at night, which went away after about a month and hasn't returned.

About 3 months ago I started to feel light on my feet and a sensation of walking on ice as if I was going to fall down a lot.

About 2 months ago I started to develop sporadic twitching all over my body, mainly in my biceps and calves.

About a month and a half ago I had some sort of gastrointestinal virus for a couple of weeks which led to another 20 pounds lost. Near the end of the virus I developed constant 24/7 twitching in my calves as well as the sporadic twitching elsewhere across my body. Along with tremors and jerking of my limbs.

About 2 weeks ago I developed constant 24/7 fasciculations in both of my feet as well.

Right now I am in a situation where I can not stay on my feet or walk much at all. While I can still see and feel muscle in my limbs, I am definitely smaller and weaker than I was before the altogether 50 pound weight loss.

My GP doesn't know what is going on but says I have hyperflexia and clonus as well and ordered an EMG after my blood, urine, thyroid and electrolytes all come back within normal ranges, but it is 2 months out unless I can get in earlier via a cancelation list. I am also trying to get in to see a neurologist as soon as possible. I am testing myself with toe standing/heel standing daily as well as trying to walk at least a mile a day, but it is really starting to become a chore to do. In addition to the weakness and fasciculations I have also had a phlegmy lump in my throat feeling since the gastrointestinal virus and also my stomach growls a lot throughout the day.

The fasciculations though do are there all of the time though, whether at rest or while flexing. They aren't really accompanied by any other sensory problems except for occasional pain or tingling. But that is rare.

What do you guys think? Should I be expecting a diagnosis?
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Old 03-20-2018, 10:26 AM #2 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

Were you overweight to begin with? Were you in good physical shape and did you eat healthy and get enough restful sleep?

When you lose weight that quickly, you will lose both muscle and fat.

Did your GP check your Vitamin B-12 and Vitamin D?

Who is performing your EMG?

Looking at all your symptoms, ALS isn't jumping out at me.
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Old 03-20-2018, 10:41 AM #3 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

ALS is not jumping out at me either. Significant weight loss and anxiety can definitely explain lots of your symptoms.
The EMG should give you peace of mind.
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Old 03-20-2018, 10:41 AM #4 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

At 26 with no family history, I doubt it. ALS usually presents as an unexplained weakness in a muscle. There are NO sensory symptoms in ALS, a muscle just will not contract. ALS symptoms do not come and go. The fact you have lost a lot of weight, especially the GI stuff points to dehydration, which would cause twitching, which is so common as not really diagnostic of anything. There are lots of less fatal causes to rule out before jumping to ALS.
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Old 03-20-2018, 10:49 AM #5 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

Was the hyperreflexia generalized or local.? One sided? Where was the clonus ? How many beats?

Your recent symptoms could certainly be post viral as neurological sequelae are not unusual and can last for months.

I hope you get an appointment soon. So far I am betting on a different answer than ALS- it really does not sound like it to me
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Old 03-20-2018, 11:29 AM #6 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

Quote:
Originally Posted by KimT View Post
Were you overweight to begin with? Were you in good physical shape and did you eat healthy and get enough restful sleep?

When you lose weight that quickly, you will lose both muscle and fat.

Did your GP check your Vitamin B-12 and Vitamin D?

Who is performing your EMG?

Looking at all your symptoms, ALS isn't jumping out at me.
I would say I was a bit on the overweight size. I was about 230 pounds 5'11". Down to around 180 now following everything.

My B-12 was normal, but my Vitamin D was on the lower end of normal. So I am currently taking 5000 IU of Vitamin D daily along with a One A Day Men's Multivitamin.

The EMG is scheduled to be done at a branch of a hospital near me.
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Old 03-20-2018, 11:43 AM #7 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

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Originally Posted by Nikki J View Post
Was the hyperreflexia generalized or local.? One sided? Where was the clonus ? How many beats?

Your recent symptoms could certainly be post viral as neurological sequelae are not unusual and can last for months.

I hope you get an appointment soon. So far I am betting on a different answer than ALS- it really does not sound like it to me
The clonus was in the ankles. It was around 5 beats I believe. The hyperreflexia was in both knees.
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Old 03-20-2018, 11:51 AM #8 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

Bilateral ( symmetrical hyperreflexia) is generally a normal variant. Anxiety can also be a cause. Clonus of 5 beats is likely ok too.

Symmetrical findings would be very strange for ALS

Please don’t quote. It makes the threads longer and harder to scrolls for PALS using assistive technologies. Thank you
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Old 03-20-2018, 11:54 AM #9 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

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Originally Posted by KarenNWendyn View Post
ALS is not jumping out at me either. Significant weight loss and anxiety can definitely explain lots of your symptoms.
The EMG should give you peace of mind.
Thank you, Karen. My GP initially thought it to be anxiety induced. Heck, even I did. But ALS was actually brought up at my last visit with her. Oddly enough, she doesn't want to run anymore additional testing until the EMG is done, which I found to be interesting.
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Old 03-20-2018, 07:05 PM #10 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

The EMG can rule out a lot of things and it can show a lot of things other than ALS.
It sounds like your doctor has a systematic plan to figure out what's going on. That's a good thing.
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Old 03-20-2018, 08:58 PM #11 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

Guy- can I ask you to dispense with the extensive quoting of previous messages? It can make a thread a bit harder to read for some folks who use adaptive equipment or who have minimal hand use if they have to scroll through lots of text to get to a new reply. Feel free to quote a sentence or two or use the name of the person you are replying to if you need to qualify who or what you are responding to.

It sounds like your doctor is pretty thorough and is taking you seriously. I have to say, the gastrointestinal stuff is not part of a pattern of symptoms that says "ALS".

If you have a chance, you may want to call the clinic where your emg appointment is and ask them to put you on their waiting list, if they have one. Let them know how much notice you require in order to get there for a last minute cancellation (I usually say 2 hours). This has got me through a few clinic doors way sooner than scheduled. You are actually doing them a favour by providing an easy appointment fill.
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Old 03-21-2018, 10:03 AM #12 (permalink)
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Default Re: 26 Year Old Male Expecting Diagnosis

Thank you all for the replies and sorry about the quoting. I will keep you updated on my progress towards getting a diagnosis of some sort. Hopefully the process can be sped up some through some early testing such as the EMG. Waiting two more months just for that single test would be brutal.
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