New here -- Terrible ALS Fear -- Long Post Thoughts Appreciated

[enceladus]

Hi all!

So, I know most of you have seen this before but I needed to get this off my chest. It's just ruining my day to day functioning and turning me into a depressive mess, and I hear this is the community to turn to when you're in a dark place.

I'm a 28 year old male, was in pretty good shape up until this month, have stopped working out since last month as I was having some nerve pain down my arms and some slight fatigue which brought me to my doctor. He did a complete blood count, my white blood cells were slightly high and neutrophils were high and he said I've got some kind of infection, so he did another test and then they were back to somewhat normal, and all was well, so I thought.

I've had muscle twitches here and there since last year but since I learned these were a symptom, or at least byproduct of ALS they started going crazy after my doctors appointment. Now I get them fairly frequently across my body, the majority of them are in my legs.

Biggest mistake I made was going on the ALS/BFS forums, which fed my paranoia even more. I'm not going to explain the same anecdotal stuff I read, because I don't want to alarm any of you who may be going through the same thing.

After the Dr's appointment, I had a follow-up, and told him I want to see a neurologist for an EMG -- that is booked for the beginning part of June. He also prescribed me some xanax 0.25mg as I told him I was having some bad anxiety about this, told me to take it when necessary -- I've taken a handful of these pills in the past month, when my mind gets really bad.

Two weeks ago I came down with a bad viral infection, phlegm, coughing, the whole bit. I was miserable, and just recently recovered 90% from this.

I am still getting dull aches in my hands, legs and feet. Sometimes I wake up and my hands are asleep. So the past few weeks have been strength testing, picking up stuff randomly, trawling forums, you name it - I'm sure some of you folks have been there. The left hand in particular I'm now obsessed over, as I feel like I almost strained my thumb while trying to lift a 50lb barbell while strength testing, but I can't be sure -- the left thumb and thenar area just always has a dull ache!

There were pins and needles, burning and painful twitches in my right foot two days ago as I was driving home from work, it's a weird sensation when you're using that foot to drive! It almost felt numb.

Anyway so I tried to workout again today, a very light workout, and the pains in my left hand have increased. They're a dull ache, accompanied by a sensation almost like the hand wants to cramp. Like there is a tendon in there that is inflamed, or in pain for whatever reason. It's even happening right now as I type this post. It's very uncomfortable and really feeds the negative thoughts in my head.

I sometimes get the same sensation in my right hand but it's really focusing on the left. I keep checking this damn hand for atrophy! I look at all the dents, the size of the thumb, the thenar eminence - everything. All the time. It's unhealthy, its obsessive, and I just can't stop.

I'm going nuts, guys. This is a level I never thought I'd reach. I'm such a nice, carefree, chill guy in real life in every aspect. I know this is taking a toll on my fiancee (she's in medicine, ironically enough) and I just don't want her to think of me as a weak human being anymore, so I try to put on a brave face.

I've pretty much thought out in my head how I'm going to finance my funeral, instead of my wedding which is planned for next year. How I'm going to break it to my mother. It is very depressing and everyone around me can see I'm not my normal, happy self.

I try not to think dark thoughts, I turned more towards faith, but I'm still having a real hard time when I experience new symptoms like these "ready to cramp" hand sensations.

I can't wait until my neurologist appointment, either way, I'd like to know what is wrong. I'll be ready if its the worse, and I'll be relieved if its nothing.

Thanks for the read folks (those that could get through this entire block! :D) any and all thoughts appreciated. :huh:

[popejoan]

It is a long post, but I didn't read ANY ALS symptoms in your post. You said you've been visiting ALS forums, didn't you read there that ALS patients say "ALS is not about feeling, it is about failing". You don't have ALS you have anxiety symptoms.

Unless you have foot drop, you have lost dexterity in your fingers or sound like a drunk. If you had ALS your post would have been much shorter such as "I can't lift my foot, I have no pain and had no injury there but it's getting worse."

By the way you should stop strentgh tests or you'll give yourself a painful rotator cuff tear like I did. Hope I could help.

[enceladus]

Thank you popejoan. I will heed your advice, it is much appreciated.

I have had some pretty bad pain in both my thumbs and hands/fingers today. I am thinking it could be rheumatoid arthritis, or a post viral or post infectious variant of that.

The twitching has gone down a bit, thank God, but it still there day to day.

I have an appointment with my GP tomorrow so I'll need to bring all of this up with him.

[popejoan]

Maybe your thumb pain could be due to strength tests. I tired to open doors with my fingers so my left finger was swollen and painful for a while.

I'm glad your twitching has gone down, although benign I know how scary it can be. I'm feeling much better but my hand twitched today which worried me a bit.

[enceladus]

Yup, and therein lies the problem. It's really hard to diagnose why we have the pain when we're constantly doing strength tests -- yesterday I was using the hand grip I have and went pretty hard at it, so at least a portion of this pain should be attributed to this.

That said, just came back from dinner with a friend, and my planar on my right foot was bugging me pretty badly -- there was some twitching there and some pain, almost like I sprained it while doing other strength tests!

Sometimes, the biggest problem is that we think we're OK and all of a sudden we feel something which gets the anxiety going again. Honestly, it's these constant feelings and the fact that everything is still undiagnosed that really gets me.

[Lilly13]

Hi Endeladus,

Did you ever hear back from your doctor? What did they say?

[Serenity1990]

Your symptoms are incredibly similar to mine.

I never worried about ALS. The twitches come after some pretty disabling clinically obvious weakness, and I never had that and neither do you. Also you mention sensory symptoms, which simply aren't a feature of ALS.

I was diagnosed with BFS last year. It's not pleasant, but compared to the neurological disorders it's a pussycat. It's benign, will not progress, so it's something I'd rather not have but I'm incredibly lucky.

Some say it's a by-product of chronic stress or anxiety. Some say it's some sort of post-viral thing. Some say it's just the result of an overtaxed nervous system, so can happen in either or both. Whatever it is it's benign.

I'm not saying that's what you've got, but the treatment is to rest well, eat well and de-stress the **** out. I suggest you prescribe yourself this medication and in a few months you'll probably feel a hell of a lot better.

[Lilly13]

Hi Serenity,

Your comment really helped me ! I am hoping to also get diagnosed with something benign when I see my neurologist next week. :)
Jeeze, the twitches sure are scary though, wouldn't you say?

I have a question for you, do your muscles ever feel tired when you have been twitching allot in a specific area? I mean that only makes sense right?

Thanks again for your answer!

[Serenity1990]

Hi Serenity,

Your comment really helped me ! I am hoping to also get diagnosed with something benign when I see my neurologist next week. :)
Jeeze, the twitches sure are scary though, wouldn't you say?

I have a question for you, do your muscles ever feel tired when you have been twitching allot in a specific area? I mean that only makes sense right?

Thanks again for your answer!

The twitches never scared me. I had them for a little while before the other stuff started; I found them a little curious but nothing more. They only began to scare me when I read on the internet (around the time I 'contracted' HA) that they could be a sign of a particular illness that also happened to be my fear. Incidentally it turns out that not only was this false but the opposite is true: their presence is actually an argument against that particular disease.

Yeah I get the muscle fatigue, probably more prominent where the twitches are happening.

I always post this thread on here. It really helped me a lot.

http://www.aboutbfs.com/forums/viewtopic.php?f=8&t=16549

[enceladus]

Hi all,

So I had my neurologist appointment yesterday by chance as someone cancelled, so he went through all the clinicals, doesn't see anything wrong with my reflexes strength or sensation, I was really worried he'd find hyper reflexes so I'm going to celebrate this small victory.

So he wanted to schedule an EMG, and it was for late July or, surprise surprise, there was a cancellation.

His initial diagnosis just based on clinical is that I have carpal tunnel and some kind of piliformis syndrome in my right leg. He said twitches are generally not anything to worry about, especially because most websites on ALS/MS are written by non-physicians. He almost dismissed them. He's been practicing 30 years, I was really worried he'd find hyper reflexes so I'm going to celebrate this small victory.

Fast forward to today somehow I was lucky enough that someone cancelled their EMG. So I had my EMG as well as an NCV this morning for my right arm (all the way from the fingers to the shoulder). This is an arm that has had twitches as recently as yesterday... Big thumping twitches in my bicep. Turns out I have a slight pinch in my median nerve with this arm (probably for both). This could be causing my hand stiffness and pain. He suggested I wear a splint while sleeping... I wanted to get one of my legs too, but they only do one appendage at a time.

I also am going to have an MRI done of my lower back to see if there's any sciatica or piriformis type deal going on with the nerves. I am more concerned about the right foot as that's where I've been getting the majority of my twitches and pain. Neurologist didn't seem worried about it.

After the arm EMG I asked him if I should be worried about MND and he laughed and said I've been on the internet too long.

So, June 26 it is til the leg EMG and I can then put this all to rest hopefully!

[enceladus]

Ugh, so now my right foot arch twitching is happening too much for my comfort.

It is almost one a minute now and is freaking me out, despite the clean arm EMG and my neuro telling me not to worry. Especially because I can see the big toe move sometimes when this happens.

I still get twitches elsewhere randomly but nowhere near the amount this right foot arch is doing.

[popejoan]

Clean EMG means no ALS. You should relax, everyone gets twitches, I twitch pretty much all the time.

[crazymum25]

Glad your ok doll face that's all xx blessings

[Lilly13]

Great news! Very happy for you :blush:
I am also worried about hyper reflexes.. a
S my doctor proclaimed that mine are "brisk." But they are meaning less if symmetrical since they can be caused by anxiety. I was under the impression that my emg would be the same day as my neurologist appointment, but I guess this is not the case. You live in Canada right?! I guess it makes sense that they have to book these things.

None the less, no als is amazing! I am so happy for you!

:D

[enceladus]

Yup Lilly, they got me in the next day though. I'm sure you can get in reply quick too. Clinical will be done same day, not to worry, I am sure you will be just fine as well.

It's hard to shake the feeling of health anxiety, though.

Today I have feet that are crampy feeling and so are my calves. No actual cramps but just a feeling and pain. Funny thing is the twitches today are extremely minimal.

Walked around for two hours downtown yesterday might have done this, but my brain is being dumb as usual. Here's to tomorrow being a better day.

[luckyme]

Hello there. It seems a lot of us suffer from the same symptoms. I started having weird sensory symptoms right after watching a movie about ALS (go figure) and after that it has been down hill. My left hand always feels weak, I have pins and needles all over at times, creepy crawling feeling like there's a bug on me, patches of skin that feel weird, muscle twitches.. its scary and I haven't seen a specialist yet, which makes me so much more nervous.

[popejoan]

Luckyme, if you have sensory symptoms like pins and needles it means it's not ALS.