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New member
Jun 6, 2007
Learn about ALS

I, like most here, have been all over the Web looking for information and hopefully some reassurance. Unfortunately there don't seem to be any concrete answers out there. Hopefully someone here can shed some light on my situation.

I'm a 33 year old male who started down this long and very scary about four months ago. It all started when a couple people noticed that one of my pupils was bigger than the other. Knowing that could be a sign of a neurological problem I went to my opthalmologist who diagnosed it as a rare but benign condition called Adie's Pupil. He said that if I wanted a second opinion I should see a neuro opthalmologist, which I did, and he also diagnosed Adie's Pupil.

At around the same time that the pupil happened I started having left side migrating low back / leg / foot pain that is unrelated to movement or position that has not stopped. Shortly after that I developed floaters in the eye with the Adie's pupil that I still have as well. At the time I was concerned about the possibility of a brain tumor or MS so I went to a neurologist who did the standardl neuro exam (strength, reflexes,etc.) - which was normal - and also ordered brain MRI (w/ & w/out contrast) and lumbar spine MRI. Brain came back normal. Spine came back w/ osteoarthritis at L3/L4 and bulging disc at L4/L5. I was relieved thinking the cause of my leg pain had been found and that the eye / floater things were just a coincidence.

During the above mentioned time I also began to see a psychiatrist due to the emotional stress / anxiety / depression I was experiencing as a result of everything that was going on. The psych upped the dose of Paxil I had been taking for about 10 years for anxiety and depression from 10 mg to 30 mg. He also prescribed Xanax, which I took every day for about a month and now take about once a week (if that).

During the month between my first neuro appointment and the follow-up appointment I began to have what I believe are myoclonic jerks - like the ones many people get before falling asleep - but frequently throughout the day. My leg, thumb, fingers, back, neck just jerk for no apparent reason. They're mild and I think I'm the only one who notices them. Mixed in with these I also had some fasciculation, but it seemed mostly myoclonus.

On my return visit to the neuro he did the neuro exam again, which was all normal with the exception of possible mild numbness on the outside of my left foot. He said he wanted to do an EMG to see if I had nerve damage in my leg from the bulging discs or if the nerve was just irritated. At that point I mentioned the myoclonus / fasciculations and he brought up the possibility of ALS and said that he would add some additional muscle groups to the EMG to look for it. He also ordered a standard blood panel that came back completely normal. The EMG is schedulled for next Tuesday and I am very scared of what I could find out.

In my research of all of the other symptoms over the past few months, I came across ALS a few times but never felt like I had the symptoms. I have no weakness (that I know of), haven't had difficulty walking, opening things, speaking, swallowing, etc. Haven't been dropping things or tripping / falling and haven't observed any muscle wasting. I had also read that ALS fasciculations are usually focal in the area where the initial muscle wasting occurs and that there is always weakness in that area - or at least some associated weakness. I've also read that ALS fasciculations never occur in relaxed muscle - which is the only time I seem to have mine.

Since that neuro visit it seems that I am having more fasciculations than myoclonus. They occur everywhere. My calfs, thighs, abdomen, penis, anus (not kidding), biceps, triceps, chest, eyebrows, eyelids, lip, all twitch. They are most often a single twitch, but sometimes I'll have a few (no more than 10) in a row. They vary in intensity from limb moving to very mild.

I know this post is extremely long, and if you're still with me thank you so much for taking the time to read this.

I'm looking for any information, insight, facts or whatever that any of you may have based on my situation.

Thank you all in advance and thank you for providing and supporting this very much needed resource.
I concur with annmarie. Very good analysis, annmarie.
Thank You

Thank you both so much for reading / replying. I was really willing to let all these weird symptoms go as odd but not life-threatening until the neuro follow-up when he mentioned ALS. I was honestly very surprised and said "but it's unlikely, right?" and he said it was. At first I was angry because I thought this difficult time was over and now I have to wait until Tues. for the EMG and maybe longer than that for results - and now from what I'm reading a clean EMG isn't necessarily an assurance that I don't have ALS.

The serotonin OD point is interesting because my Paxil dose was upped from 10 to 30 mg three months ago and Paxil decreases the absorption of serotonin - meaning it keeps more of it active in your brain. But what I've read about serotonin OD is that it's an acute, rather than chronic reaction. I've also been on up to 40 mg (about 10 yrs ago) and don't remember having the twitches - but I guess it's a possible explanation. When I first got the twitches I wrote them off as Xanax withdrawal, but they have been happening too long to be that.

Do any of you know about the statement that fasciculations in relaxed muscle are never ALS-related? I think I read that in the aboutBFS forum.
Idela - sorry for the symptoms you are experiencing. We have all been there, so know how frustrating and stressful it can be.

One thing I have to ask - you are 33, did anyone ever notice your pupil before? I did not research Adie's pupil, which I probably should have before responding, but how did it occur acutely? Especially with the floaters.

Don't be upset that you are waiting until Tues. for your EMG, that's really great compared to months that some of us have had to wait! And, the doc will be able to tell you right then and there what your EMG reading is. And if you are having a lot of fasciculations, it will show on your EMG.

As far as your lack of muscle weakness, that is great news! Especially in the face of ALS. Unfortunately, as far as the fasciculations, that is not a true statement. Many PALS on this forum have experienced fasciculations while at rest, while using a muscle, before weakness or atrophy, after muscle weakness and atrophy....nothing in the research holds true, everyone is different.

There is a syndrome called Serotonin Syndrome, which, because you have been on SSRI's for so long, could be occurring. Have you tried researching that? You never know what you could find.

Whatever you do, try to relax. General anxiety and Research anxiety can only exacerbate your symptoms, especially fasciculations. Let us know how you make out on Tuesday. Good luck. Leslie
Adie's, etc.

In regard to the pupil, some people are born with different size pupils (anisocoria is the medical term for unequal pupils) but I'm not one of those - as no one had ever noticed, then all of a sudden two people did. Adie's just pops up in some people. They - of course - don't know what causes it, but suspect a relationship to a virus and stress. The diagnosis is confirmed by observing whether or not the pupil responds to a dilute substance called prilorcarpine that a normal eye wouldn't respond to.

This whole episode was preceded by a prolonged (6 mo plus) period of extreme job-related stress and the one common thread I can find for all of my symptoms - with the exception of the floater - is stress / anxiety. I'm also a naturally pretty high-strung person. Unfortunately this whole episode has only served to increase my general anxiety.

Regarding the relationship b/t the floater and the Adie's, none of the docs (opth, neuro-opth) seem to think there's a relationship.

All of it does just seem like an awful lot of 'coincidence' though. I feel like I just reached age 33 and started to fall apart.
Stress certainly can do a lot to us! Viruses also can cause many of your symptoms. A couple things that can be checked out are Epstein-Barr and Guillian-Barre. Maybe you have already checked these out, but they have a lot of these symptoms and can be brought on by viruses, especially if this is what caused Adie's. Hope things get better for you soon. Leslie
A Few More Questions

For those of you that are undiagnosed:

1. Have you had EMGs that were normal?

2. Do you have weakness / other symptoms or just the fascics?

3. How long have you been seeking a diagnosis?

4. Are there any characteristics of ALS fasics that are different from non-ALS ones (ie. multiples vs single twitches, myoclonic jerks vs smaller twitches, constant vs intermitent)?

5. Although I've read that ALS is much more common in people 50+ it seems that many people on these message boards, both undiagnosed and diagnosed, are in their 30s. Do you think this is due to the fact that more people in this age group use the internet or is there a preponderance of both BFS and ALS among people in their 30s?
Annmarie - I did have my biopsy today and that was an experience all of its own. Not sure if I should start a thread to talk about it or what! OMG!
Hi idela; - how are you doing one year after ? Any diagnostic?
A year later...

I am happy to report that I'm doing great.

I had the nerve study done and it was all normal. The fasciculations decreased significantly, I learned to live with the floater and the back / leg pain and just went on with my life.

I've had followups with the neuro and neuro-opthalmologist and everything looks fine - although my pupils are still a bit different at times.

The best source of all of those symptoms I can come up with is stress. I was in a job that was incredibly stressful and frustrating before and while all the health issues happened. I am also happy to report that I left that job a bit over a year ago and have one now that is better in every way.

Another positive thing that came out of that awful period was that I started working out regularly and eating right. It just struck me that I was so worried about my health and wasn't doing much to preserve it.
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