Signs appear consistent with juvenile ALS, but very strange sensory symptoms as well?

[Alastor M]

Hello, I'm Alastor, 18 and new here.
I think I should just let you guys know beforehand:
I am not the average Google monkey who is a hypochondriac and is also terrified of various occult illnesses due to nonspecific symptoms(i.e, fascics all over body, no weakness, twitching), although I do have several that fit this category.
Second: these symptoms have been going on for years, and statistics are fortunately in my favor that I do not have this dreaded disease ( around the odds of 1 in 65 million for juvenile onset ALS). but only recently these semi-dismissive symptoms became very worrisome. I've just now noticed that I suffer from hypotonia on my entire right side,and I have mild atrophy in my left leg, right arm AND (the kicker) one side of my tongue. The progression has been very subtle and I went to the doctor immediately after FREAKING OUT (kay, so maybe anxiety isn't helping ).
Strangely, I do not suffer from a clinical definition of weakness yet ( so my Doctor tells me, but I seem to feel it, especially in my right hand and left leg)
My doctor admits that the asymmetrical atrophy does not look good, but yet seems positive that this could not be jALS. Hearing of other mimics reassured me for a bit, but... the problem is, tongue atrophy does not seem to be very common in other neuromuscular disorders.
There are other things looking in my favor as well though, and those are extremely odd ( and uncommon)sensory symptoms throughout my entire body.
Oddly, this pain I experience makes me happy, as it seems that such pain is EXTREMELY uncommon in ALS.
it comes and goes.
I also get various hot and cold sensations throughout my body crawling/ bugs,needle like pains and a feeling like sometimes my extremities are strange to the touch.
I'm due for a brain MRI soon (to rule out tumors, Chiari malformation, MS, etc.) and I would like for some info as to if this seems like probable ALS. If it isn't, then what in God's name could this be? Lyme seems high on my list...Starting gluten free diet soon for possible Celiac.
Thanks, I'd love to get some footing on this. I love you all for taking your time to respond to an angst-ridden, anxiety-driven teen such as myself.

 

[trfogey]

Hi, Alastor. Why are you questioning what your doctor says? What could we possibly tell you about your condition that your doctor, who has actually examined you and who has your test results and the ability to order additional tests, can't?

 

[Alastor M]

Trfogey:
I may be overreacting, I know. And I don't necessarily doubt my doctor, but right now he has no idea what's causing this as much as I do.
It just seems odd (ESPECIALLY TONGUE ATROPHY) and I'd like to know if sensory symptoms and inflammation everywhere can be associated with als.
I'd like to nip this in the bud early, whatever it is. But my doctor seems nonchalant about it.
The overwhelming amount of symptoms I have developed that are found in als is another trigger for my possibly irrational fear.
Recently in the last couple of months, I'm losing my voice more, and it's becoming more nasal in tone( dunno why that'd be, I've never had a problem like this before).

 

[Alyoop]

Alastor, I think many people try to read, emotion in the faces of their doctors. They are individuals, that until you had the appt , you really didn't know. I would not stress about your Drs nonchalance. He has ordered tests to help determine what may, or may not be causing your symptoms. Nonchalance would be, if he sent you away with no help at all.
I can understand that you are worried, but you need to wait until of the tests are done a nd the results are available.
I wish you the very best and I am sorry you are in this predicament.
Aly

 

[Alastor M]

You're right.
I'm pretty certain that it cannot just be a pinched nerve, though.
Gotta love chiropractors. They found a subluxation in my neck and said it was causing all my problems.
Also, i dunno if this is relevant. But one of my eyes is kinda droopy looking on the right side.

 

[trfogey]

I may be overreacting, I know. And I don't necessarily doubt my doctor, but right now he has no idea what's causing this as much as I do.

Sure he does. He's simply choosing not to share them with you, probably in hopes of preventing you from doing exactly what you are doing -- searching the Internet and trying to diagnose yourself -- until he is much more certain what's going on. .

It just seems odd (ESPECIALLY TONGUE ATROPHY) and I'd like to know if sensory symptoms and inflammation everywhere can be associated with als.

Not that I've ever heard of or read about.

I'd like to nip this in the bud early, whatever it is. But my doctor seems nonchalant about it.

Don't start it and you won't have to nip it in the bud. That was your first mistake.

The overwhelming amount of symptoms I have developed that are found in als is another trigger for my possibly irrational fear.

Possibly irrational? For someone who claims that he is not a G88glemonkey, you toss around a lot of medical jargon without even realizing that the story that you tell around those terms doesn't fit the actual meaning of the terms. If you did the same thing at the doctors office, I'm not surprised that he's very noncommittal when talking to you.

Recently in the last couple of months, I'm losing my voice more, and it's becoming more nasal in tone( dunno why that'd be, I've never had a problem like this before).

Sounds like a problem that you should see an ear, nose, and throat specialist about to me. And, if the differences you think are going on with your voice were due to ALS, other people around you would be remarking to you about them. It's the cold and flu season -- relax.

 

[Alastor M]

I understand my apparent hastiness at using afore mentioned medical jargon.
However, I have confirmed atrophy(quite mild), visual migraines (neurologist, family doctor and chiropracter all agreed), Babinski's reflex on one foot, and hypotonia and tremors were confirmed as well.
I'm also forgetting many things(friends names, proper spelling of words,what I'm doing, where I'm going, class subjects, even what I'm talking about in mid sentence,etc.)and suffer sometimes from a sluggishness when speaking, other times there's almost no problem at all.
Possibly the forgetfulness is due in part to stress, can't rule that out. The speech, ehh....it's manageable, but annoying at times.
The waxing and waning of my speech issues suggests temporary inflammation as well.
Had a blood test, only thing noticable was the extremely low Alkaline Phosphotase levels, which brought about my doctors suggestion of abstaining from gluten.

 

[trfogey]

Alastor,

With ALS, it's not how your body feels, but how your body fails. ALS is a progressive degenerative neuromuscular disease, which means that, over time (and a short time at that), more and more nerves and the muscles that they control will fail -- permanently. It starts in one part of the body -- a hand, a foot, your mouth or tongue -- and spreads through the body from there.

If no muscles are failing, it's not ALS. If the muscle failures aren't spreading -- from the fingers up the arm, from the foot up the leg, or from the tongue to the rest of the mouth and throat -- it's not likely to be ALS. If your problems come and go, it's not ALS.

You claim to have atrophy and hypotonia, yet the doctors find no clinical weakness. That's not what happens with ALS. Weakness first, followed by either hypotonia or hypertonia, depending on which type of motor neuron is involved, then, finally, atrophy. And you would have functional problems with the muscle, in any case, because that muscle would become paralyzed. That's what you would be naming as your symptoms -- what you can't do with your hand, or arm or leg any more -- instead of reeling off medical terms that you don't understand.

You have a whole bunch of sensory issues and visual migraines -- once again, not ALS. You claim that you have had these symptoms for years. Once again, not ALS -- fully half of all confirmed ALS patients die within three years of the onset of their first symptoms and all but a relative handful of the surviving half are severely crippled in that same time.

Nobody here is saying that you don't have something wrong with you. We're just saying that you've jumped the gun and come to a questionable conclusion -- you've added one and one and come up with eleven, not two. Let your doctors do what you pay them to do and quit trying to fill in the blanks they are looking at with poorly reasoned distractions.

 

[Alastor M]

THAT MADE ME FEEL A LOT BETTER.
Thanks, Trfogey. I guess my hormonal idiocy got the best of me.
I have something like a foot drop on my mildly atrophied left leg,but it has its good and bad days. and my hand has two fingers that are curling in, whereas the others are pointing upwards? (other hand has none of this going on). Cramping occasionally, but also random muscle pain.
SO if it's not ALS, Anybody got any ideas?

 

[trfogey]

Glad I could help a little.

Just remember that there is a possibility that you could have multiple things going on with you. You could have a subluxated vertebra or two causing your arm or leg (or both) problems and something else entirely causing your migraines and sensory issues. That's why we pay the neuros the big bucks to sort it all out.

We'll all just pray that, whatever they find, it's treatable.

 

[Alastor M]

You guys really are the best.
Please do pray for me. This has my mom worried sick as well.
My dad passed away from amelanotic metastatic melanoma a few years back, and he exhibited similar symptoms ( not atrophy though).
Last time I had a Brain MRI (around four or five years ago when the melanoma first occurred, my dad recommended I do so to make sure it wasn't genetically linked), the only thing strange was that my brain seemed very large for my skull, and was drooping down a bit. They said that after my growth spurts are done, It would most likely be gone, but also that I should be on the lookout for Chiari as well.

 

[Blizna]

Alastor, tongue atrophy IS common for more diseases not related to ALS. The thing is, do you get fasciculations on that atrophied side? Tongue atrophy as a result of denervation would have left that half of tongue twitching and fibrillating, you would definitely notice.
What about myastenia gravis? Droopy eye is big marker for this disease and its treateble. Atrophy and weakness are typical.

 

[Alastor M]

Hm, never heard of it but I'll definitely check it out. Thanks!

 

[Blizna]

No problem. MG is quite commont auto-immune disease causing weakness and wasting. As its not nerve disorder itself, there are no fasciculations (though there are some rare cases reported). If your tongue had true atrophy, your speech would be at least somehow slurred or more difficult. is that this case?

 

[Alastor M]

Some days my speech is slightly slurred, and it takes some effort to enunciate things properly (seems like it's difficult to move my mouth at times). Other days it;s fine, but my throat is inflamed (I think) and it's hard to swallow.
I've always had a major problem with excess phlegm and saliva coming up in my throat, but no particular reason why...
Did tongue exercises, the mildly atrophied side goes numb (very strange).