Would like opinion from those who know

Dear ALS Community,

I appreciate this website as it offers people who are curious (like me) and opportunity to receive insight and answers from people who have actually experienced ALS or know people who have cared for those who have.

I was hoping to share some of my symptoms and see if anyone could tell me what they think it may point to. Let me say up front, that I will probably be forwarded to a Neuro in the near future and understand that anyone on a computer cannot replace a professional. Also, I do not lean toward the hypochondriac side! I am truly wanting to know what it going on. BTW, I am 30ish male.

I do not know the exact date of when my symptoms started, I would say they have been going on for 2-3 months now. I started previous to this with feelings like bugs were crawling on my body, primarily my legs. Not long after this I started having full body/random twitching. It was most pronounced while laying down or resting, not so much while standing or walking.

I must also add that during this time, I jerked awake at night every time when I was falling asleep. These have waxed and waned though.

I now have extreme fatigue (weakness?) that doesn't let up much. My body does not respond to exercise like it used to either. Some other symptoms that have come along are vision (it has gotten worse).

I don't like the twitching, but I can live with it. The fatigue is the worst part. I have a general sense of just being tired and weak. Thanks for any help as to what it is NOT and what it MAY point to. Thanks for all and any help!

BTW, my twitching has been constant daily. I haven't went an hour, and hardly a minute without some type of twitching this entire time.

What do your doctors say that you might have?

My Doctor is truly puzzled. The only abnormal range was a really low Vitamin D and slightly low Iron. Everything else was fine. They ran all the normal tests (B12, Lyme, Thyroid, STD, CBC, etc.) and nothing come up.

Crawly feelings along with vision problems and fatigue for your age can point to Multiple Sclerosis. Have you had an MRI? BTW, Weaknesses is not the same as fatigue. If your dr. didn't mention that he saw clincal weakness..then you most likely have fatigue instead.

Apparently, nothing serious neurologically is going on, or your PCP would have found it. Your best bet is to learn what you can about benign fasciculation syndrome, which is a good match for the symptoms you describe. Try the website a b o u t B F S dot c o m. Lots of information there and a very active forum of folks who share your symptoms.

kmendsley said:

Crawly feelings along with vision problems and fatigue for your age can point to Multiple Sclerosis. Have you had an MRI? BTW, Weaknesses is not the same as fatigue. If your dr. didn't mention that he saw clincal weakness..then you most likely have fatigue instead.

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The crawly feelings are mostly gone. I believe this was the twitching in its earlier form (of course I don't know for sure, they just preceded teh twitching). I still have some sensory issues (ie tingling).

No MRI yet. I think my Doctor expects my Neuro to look into all of that.

The only strength testing that was done by my Dr. was holding my arms together and legs down and telling me to push or pull them against their strength.

trfogey said:

Apparently, nothing serious neurologically is going on, or your PCP would have found it. Your best bet is to learn what you can about benign fasciculation syndrome, which is a good match for the symptoms you describe. Try the website a b o u t B F S dot c o m. Lots of information there and a very active forum of folks who share your symptoms.

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Thank you. I have actually ran across this site and am considering it in relation to my symptoms.

So would you say, given your obvious experience and knowledge, that my symptoms would point away from ALS?

kmendsley said:

Crawly feelings along with vision problems and fatigue for your age can point to Multiple Sclerosis. Have you had an MRI? BTW, Weaknesses is not the same as fatigue. If your dr. didn't mention that he saw clincal weakness..then you most likely have fatigue instead.

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I no longer have the crawly feelings. I believe they were probably the twitches before they become more pronounced or just a mere sensory issue. I still have migrating tingling issues though, but they do not feel like the bug crawling.

I have not had an MRI. I think my GP expects the Neuro, if they forward me and I believe they will, to do that.

You have not one symptom that points to ALS, but given the visual issues and crawling feelings along with fatigue, you DO have pointers toward multiple sclerosis. I am not saying you do have it, but with the visual problems you should be treating the issue as serious until it has been established that you do not have optic nerve neuritis.
Get your butt to a neurologist and get cleared!

Alyoop said:

You have not one symptom that points to ALS, but given the visual issues and crawling feelings along with fatigue, you DO have pointers toward multiple sclerosis. I am not saying you do have it, but with the visual problems you should be treating the issue as serious until it has been established that you do not have optic nerve neuritis.
Get your butt to a neurologist and get cleared!

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Thank you!

I am very confident that they are going to forward me very soon to a Neuro. I know you are not saying that I have it, don't worry I am not a hypochondriac, but appreciate you mentioning what it could point to.

I will have to google optic nerve neuritis as I am not familiar with it. I will mention that I have had bouts with dry, red eyes. In fact I had to get my wife to hunt for some visene while driving the other day. Not sure if thats a symptom.

Thanks.

Coon said:

So would you say, given your obvious experience and knowledge, that my symptoms would point away from ALS?

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I have no idea why you thought that you had symptoms of ALS to start with. If you had read any of the sticky posts here or any number of archived posts here, you would have seen that the symptoms and nature of your onset of those symptoms don't sound anything at all like ALS. Not to mention the 50,000 to 1 odds against your developing ALS in a given year, just as a general rule.

trfogey,

I have attempted to read the stickies. However, over the past couple of weeks I have read through them and other resources on the web. Some of them seeming to either contradict or qualify statements made concerning the facts concerning neuro issues.

For example, I read somewhere that twitching before weakness is surely a sign that it cannot be ALS as the twitching can only come after. Then I read that 5-6% do in fact have twitching first.

I was hoping to get some info from those who actually experience this and interact with those who do as on this board. I am truly interested in the opinion of those on this board and having someone in flesh and blood to ask to clarify these things for me. You have been helpful towards that end, as well as the other posters. Thank you for your time and I sincerly apologize if it looks like I didn't read the stickies.

Hope you the best.

Coon, dry red eyes is not a symptom of optic neuritis, loss of vision is. Only you know if you have had an acute loss of vision. If it's just dry eyes, then I would not bother worrying about it. Everybody twitches so stints, some more than others. I twitch 27/7 and have done for 4 solid years, I do not have ALs and they are just a coincidence, and benign as I have no LMN signs on EMG to support them being anything but harmless.

I Do think you are over dramatizing the situation, judging by the pattern of your posts. Believe me after reading hundreds of these posts, you can spot the pattern a mile off. Your twitching will probably escalate due to your anxiety, caused by you hunting for answers online.

Coon said:

I am truly interested in the opinion of those on this board and having someone in flesh and blood to ask to clarify these things for me.

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The best flesh-and-blood resource for you would be your personal physician, of course, and not a group of strangers on a message board on the I n t e r n e t. And note that the board's opinion has been unanimous thus far as to whether your symptoms point to ALS -- no, they don't.

And, if you truly understood what the mechanism of MNDs were all about, you would know how to distinguish between established truth and unqualified anecdotes, as well as knowing that the particulars of your case point far away from ALS. But when all you are reading is case histories from other people that also didn't have ALS when they posted here, it's very easy to be seduced into thinking that you could be an exception to the rule.

Apparently, though, you would rather worry about something that is quite literally a one-in-a-million chance than to focus on much more likely possibilities, so I'll leave you to it.

Good luck to you.