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Mdcastle

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So here's

General backroung- extensive history of anxiety and depression. Confirmed neck herniations -C4-C5 and C5-C6


2010: Eyelid twitch that went away after a few days

Oct 2014 Eyelid twitch started again and stayed for several months. Not constantly but
Dec 2014 Eyelid stopped twitching but it spread to around my ear on the same side, then around my ear.

Late december: flare-up of my herniation, had a lot of shoulder pain

Jan: Both legs got really weak. I stopped my longtime anti-anxiety medication (Seroquel) afraid it was causing the symptoms, but things only continued to get worse. My legs have steadly gotten weak to the point that they're tired after just climbing a flight of stairs. Shortly after I noticed a burning sensation on the tip of my tongue.


Feb: Started noticing my tongue twitching when I stuck it out. Often it's so subtle that you can only see it by the changes of reflection when a strong light is shining on it. Sticking it out seems to make it vibrate a lot, then it settles down a bit. At the time I couldn't feel it, but now can feel it at times, even when it's at rest. My tongue started to look atrophied to me.

Dentist remarked I wasn't opening my mouth as far as usual

My arms are weak and twitch when I hold them out and my fingers shake when I spread them out.

Saw my psychiatrist, who at first thought I had tardive dyskinesia, now is backing away from the diagnosis thinking it's an age-related tremor. He will not prescribe any other anti-anxiety medications because they're addictive.

Have a sensation of a lump in my throat, is especially prevalent after eating, is not really noticable other time.

Trouble swallowing solid food- often the feeling there is something "stuck" and have to swallow more than once.

A bit clumsy while typing

Left arm feels a bit weak, but not too bad, not as bad as my legs of the one with neck issues.

Lots of cramping in my calves if I fall asleep on the sofa with them bent.

Random, single body twitches and spasms lasting up to a minute various places that have decrease in frequency lately.

Trouble talking- I bite my tongue and words come out wrong and have to really concentrate to talk. Everyone else says I'm talking better than I normally do. Once I concentrate I can make the correct sounds, but it sometimes takes several times.

Tightness in my upper jaw. Twitch if I hold a smile, teeth "chatter" if held closed

March: Saw an doctor, who found nothing wrong, routine labs turned up nothing remarkable. He thought it was tardive dyskinesia, but I insisted on a neurologist referral.

Have been trying various reflex tests on myself, after several hours stroking my foot I was able to make my toe go up- once.

Neurologist said my tongue looked fine (so did my psychiatrist, doctor, and family), and said he's seen a lot of tongues. Showed me the dramatic Youtube videos of people with ALS and asked me if my tongue looked like that, and I had to say no. Reflexes on both legs and left arm were normal, no Babinski (does it invalidate the test if I know what he's looking for?), didn't check Hoffman or anything with my face. Right arm had reduced reflexes, he said was due to my neck issues. He said that based on the reflexes I do not have ALS and sent me on my way, did not order any further testing. Attributed all my symptoms as either normal, anxiety, or neck issues.

Noticed one of my toes doesn't curl as much as the others. I started noticing my toes when walking now that I heard that was a symptom.

Been clenching my jaw a lot.

Hard to hold my right eye open, both lids seem to be weak.

No trouble swallowing liquids, no yawning, there's nothing I can say "I can't do that anymore", just that it takes a lot more effort or I can't do it as much. I used to be able to ride bicycle 20 miles, now I can just do it a mile or so.

Thank you so much for any insights and for reading this.
 

skipper66

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I think alot of your issues are anxiety or stress related. I honestly think that you have absolutely no reason whatsoever to even suspect ALS. Please don't get on Dr. Google about your symptoms. We aren't able to come up with what actually is going on with you or to even speculate on what it could be. This is a ALS forum and your symptoms aren't ALS. Truly sorry you are having any issues at at all . But, we honestly can't help you here. Anxiety and stress can be a horrible thing to have to deal with. I have just been put on a very low dosage of Seroquel and my left eye has been twitching for the last 5 days. But, I'm not going to go into detail on that here. Good luck to you!
 

affected

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Honey I can't quite work out why you are here asking terminally ill people to disagree with a large range of doctors.

Doesn't sound anything like ALS, just like you have already been told.

Get a referral to an ALS specialist so that you can be told again if that will help, and please stop trying to test yourself it doesn't work.

All the best dealing with your anxiety.
 

ECpara

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Nothing, frankly nothing sounds like ALS. Even a neurologist told you as much. Your anxiety is getting the best of you. Get help for it so it doesn't consume you.
 

Mdcastle

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Thanks for the responses.

I have tried making appointments at the Mayo Clinic and the University of Minnesota, but neither of them will see me.

I know it's unlikely to have such widespread symptoms after only a couple of months, but there's always the stories about "that's how it happened to me.

Does anyone know what I'm talking about when I saw I can only see fine movements on my tongue when there's a strong light shining on it so the reflections off the light change?. Is it possible this is actually normal?

Right now I'm thinking about trying to switch psychiatrists because frankly addicting anti-anxiety medication might be the least bad option right now.

Should also mention I get double vision if the look to the right or above,

I always assume the worst possible scenario so I can better deal with it, but usually it just feeds my anxiety, and at this point I wonder if I'm making myself physically sick, or even an actual conversion disorder.

I assume its a good sign that I can still walk on my heels and toes, even if it feels weak. And that I have no trouble swallowing liquids, even a full glass of water at once. And that there's not one thing I simply can't do, even if it is at times difficult or can't do a lot of it. This seems to be what the sticky is saying, that ALS is failure, not fatigue. I assume if I was having trouble with my legs even a regular neurologists clinical exam would have picked up something abnormal?

Again, thank you so much for your responses.
 

Atsugi

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A normal tongue is in constant motion when viewed in a mirror. The reason for this is the same reason we stick out our tongues when doing ultra-fine work. That part of the brain is activated.
Double vision has nothing to do with ALS.
Feeling weak doesn't count. Paralysis does.
Yes, a standard neurologist exam would pick up ALS if you had it.

You're still here, which means you're still looking in the wrong place to diagnose your problem.
I'm no doctor, but everything you said leads me to think "health anxiety." It's a problem often seen in med students: when they study a disease, they think they've got it. Possibly you're an unconscious victim of the ALS Challenge.
 

Mdcastle

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Thanks. I guess I was concerned because he said I did not have ALS without doing an EMG and he was just a general neurologist, but I guess at some point I have to trust him and his judgment that no further investigation is required. . I have an appointment with the orthopedic doctor on Thursday to explore that avenue, even though I'm having facial symptoms too.
 

affected

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That's great, please move on from this site now as we can't help you any further.

I wish you all the very best working with orthopedic doctors. You could also ask your doctor to investigate health anxiety with you. It will cause so many symptoms that it becomes difficult for the doctors to sort everything out.
 

Mediasmart

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along with reading the stickies and gathering advice here, I would also advise all self diagnosed candidates to go read the section newly diagnosed, it's the next thread down or up.

Compare your current situation with some of the stories and descriptions in that section. then if you feel like you belong here come back. otherwise.....
 

Mdcastle

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I'm sorry if I offended people for some reason, but permit me one more post:

1) I'm assuming even a regular neurologist would know red flags for ALS, and I should accept the fact that he didn't find any, and that he would know an atrophied tongue if he saw one? What concerns me is some reports have it as rather subtle as opposed to the dramatic YouTube videos of the entire tongue.
2) If something is weak / feels tired / is hard to move, not ALS. If something plain doesn't work, maybe ALS?
3) It's unlikely that I would progress from a twitching eyelid to symptoms all over my body in just 6 months?
4) If any symptom is not constant (like my lump in my throat, jaw tightness, or random twitches), it is not ALS. And having to swallow twice for certain solid food (from the sticky) is not ALS.

Thank you so much again, and I don't anticipate posting again unless my further visits with doctors raise some issue.
 
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