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Amyotrophic Lateral Sclerosis (ALS) Message Board

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Hey James,

Oh that's totally fine. My messages are usually long as well, this is a super long post sorry, hope you don't mind. Sorry about earlier, I'm kind of new to posting on forums.

Is June the soonest that you can see your neurologist?? That's a crazy long time from now. Have you considered trying Cymbalta? I hear it's really good for sensory symptoms as well, if that's still bothering you some. Are your symptoms getting worse, or are they the same?

How are you coping with the lack of diagnosis? How do you manage that and get through that? And all those physical symptoms, that sounds like it's terrible to live with. How do you manage that? How do you deal with the fear? Are you able to go through with life normally, did you have to quit things?

Yeah... That's pretty much what happened to me... Just hanging out and then suddenly this happens. It started in my right forearm, strain/pain while I was typing. The next day it was in my wrist and hand, all fingers, and my left forearm. Burning pain, tingling, aching, itching, thumb spasms. I stopped using the keyboard/doing repetitive motions entirely because it seemed like a form of repetitive strain injury, like carpal tunnel. Next day it was in my left hand, and started getting tingling in my legs and feet. Then it turned into aching in my toes and ankles, knees, elbows and burning pain in my heel and foot. Random sensation that I'm being pinched, anywhere on my legs or arms, and on my throat that is mainly a deeper ache now. The tingling seems to have stopped for the most part, as well as the burning and itching. Had pain in my chest, though I had that same pain around 8 months ago on and off for about 2 weeks before it randomly disappeared. I had mild sciatica when I was 17 for a few months that randomly disappeared as well. I'm getting both on and off now. One night I woke up and had intense stabbing sciatic pain that went away. Had a similar intense stabbing pain in my left knee all of a sudden the other day while sitting that went away, but I've been getting occasional flashes of it since then, and some aching. I've had pain in my jaw, migraine-like pain going up the back of my head. One day it felt like I had pressure on my neck/carotid arteries, that went up and around my ears, felt like my ears were full and had a bit of an earache. My hands tend to be the worst, the most consistently achey and painful. Right now it's my upper back/back of neck/shoulders that are very painful, for no reason. I rarely get headaches. I did get them when I was 18 nearly every day for an entire year, but that went away randomly too. Now my head gets slightly achey sometimes, very mild, pain is mostly in other places. Some days I feel nauseous off and on, a few days ago I was dizzy for the entire day. Sometimes I feel randomly exhausted for a few hours for seemingly no reason, that goes away without rest. My arms and shoulders will feel suddenly very weak and strained after using them, like I was doing a small amount of writing for my homework and my right arm felt strained and weak for a few hours after. I've had pulsatile tinnitus in my left ear for a few years now that I've noticed is occasionally sounding different than it normally does, which worries me. My entire back gets sore and painful, different areas at a time. Mostly in the upper part though. The random muscle spasms are frightening, particularly when it's my thumbs.

My abdomen has been fine so far, and most of my face thankfully. There is a particular spot in my upper back, below my right shoulder blade that will get tingly when it's strained. Like when sitting or standing awkwardly. I feel like there is definitely some sort of physical injury there or near there. I've sat with poor posture while typing, which is what makes me fee l like part of what is going on could be repetitive strain injury (RSI), or that RSI triggered the rest of this. I did see a physiotherapist about my posture, he said it was 'forward head posture' in the C7 part of my spine, but that it was pretty mild, maybe a 2 or a 3 (not sure what that means).

What I'm having difficulty with is not knowing what this is. Not knowing if typing or sitting is injuring me further (RSI?), or if this is psychosomatic and not even real, or fibromyalgia and therefore also not really real. I had a full body bone scan done September 26 that said "No significant acute activity identified. There is incidental mild to moderate activity involving the posterior left calcaneus. Nonspecific for either a previous injury, soft tissue inflammation/injury." I think that means there is some inflammation in my left foot, possibly from running. I'm getting really depressed as well because I don't know if I'm hurting myself more when doing things or not, like running, or writing for my homework. Been struggling with getting up and having the motivation to do things.

I had really bad anxiety because of this for a while. I've had a lot of ups and downs where I feel okay/normal, and then I feel miserable. I started getting so anxious that my anxiety started waking me up and I was only getting 1-3 hours of sleep each night for about a week. One night I woke up with a full blown panic attack and called an ambulance because I thought I was dying. Heart was just pounding, too weak to stand or move, arms and torso were numb. After that I started being subconsciously afraid to fall asleep because of that attack; when I started dozing off from exhaustion, the anxiety would jolt me awake. I've managed to work through the worst of the anxiety now somehow.

I'm terrified of this being something like fibromyalgia or something even worse. I'm hoping it could be something little like a mix of RSI and psychosomatic stress. I can't stop focusing on my symptoms and worrying about it. I was rather calm and okay for a few days, but I was still feeling pain so I'm not sure... The pain hasn't been too intense so far that I need medication for it; I'm just worried that this will progress further, like it has been, and worried about what will happen to me in the future. I love typing and playing games, I want to be a programmer. I'm worried that this will interfere with that.

Sorry again for the super long post. I briefly glanced over some of the other posts under ALS and noticed that you reply to and help encourage a bunch of people. I though that was very kind of you. It's been difficult trying to find support or someone to talk to. My family doctor wouldn't finish listening to me describe my symptoms, and I only mentioned a few things to him -- a vastly summarized version of what I've written here. My friends don't really understand, my mother thinks there's nothing wrong with me, and I wonder that too (psychosomatic?). I have been looking into seeing a counsellor, I think that could help. Thanks again for taking the time and talking to me, I appreciate it.
Hi James,

I'm glad your symptoms haven't gotten worse. Is there anything else out there or something you can do that can help with the muscle cramps? You're right, it would be better to have fibro than other things like ALS. I just have to work on staying positive, I guess. I'm really up and down every day. I know I'll feel better once whatever is happening with me stops getting worse... I think I jinxed myself the other day. Shortly after I finished writing my last post, that pain on the left side of my neck/upper back started getting really bad. I took naproxen, but it didn't help at all. It kept throbbing, but eventually went away after a few hours thankfully.

You mentioned before that it gets painful after sitting in one position for a while, how do you manage that as a software engineer when you need to sit at the computer for extended periods of time? Yeah, I do believe time passing will help. It'll take a while for me to adjust, since a month ago I was pretty much pain-free and I'm still holding onto that.

I only had a tetanus shot back in June... But that would be 3 months before I started getting any symptoms. Could it be related?

As for firing my doctor... Well, I live in Ontario and it kind of works a bit differently here... I looked into it a bit. I would need to tell him that I would like to be removed from his list of patients first, and then I would have to look around for a new one. Apparently it can be very difficult to get a family doctor, and there are waiting lists. I'll look around though.

I got a referral to a neurologist yesterday! Not from my family doctor, but from a random nose & throat doctor, haha. His receptionist called around looking for a neurologist that I could get in to see as soon as possible, and the earliest was April or May of next year :( she suggested I try to call around some more myself and see if I can find one that I can see sooner, so that's what I'm going to do today.

I saw a chiropractor yesterday as well, since they had a special on for $27 for an assessment. Really not sure what to think of that. They did measurements and found my right side was 1/3 of an inch higher than my left... Something about something collapsed in my feet, but they look normal to me, they have a normal arch and stuff... They did some x-rays, and said the curve of my neck was very abnormal, I didn't have a proper 45 degree curve. They also did this thermal spine test thing, they took this little device and quickly rolled it up my spine and it showed colours on the computer screen. It showed red in my neck, a bit of red in the middle, and red in the lower back. Red meaning severe, nerve compression or inflammation. They also pressed parts of my spine to check for subluxations I think, and they found a few, mostly in my neck. They said I should be coming in right away as soon as possible for treatment and adjustments because my case was very serious, and if I don't do something about it then soon I won't be able to use my arms and hands.
I mentioned this to my sister and sent her a picture of the neck x-ray, and she asked her chiropractor. Her chiropractor said they were using scare tactics, and they didn't do the x-rays properly; my jaw was pointed downward when it's supposed to be parallel to the floor, which would make it look straighter. She also said the thermo device was very inaccurate and not a proper diagnostic test. I could come in hot and sweaty or really cold, and it would read improperly.
I'm not sure if I should completely disregard what my chiropractor said, or maybe see a different chiropractor for a second opinion, or just leave it.

Later when I was walking, I had a few flashes of sciatica on the left side. I went jogging and it didn't seem to bother it. Just my ankles and knees bothered me, particularly on the left side. After I got home, my left ankle and knee hurt pretty badly for a couple of hours and then were fine. I suppose my current plan is to exercise despite the pain, unless it becomes extreme and obvious that it's harming me.

Just a thought, would the full body bone scan I had done in September show if there was a spinal issue like subluxations or an abnormal curve of my neck?...

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