Old 11-25-2011, 01:40 AM #1 (permalink)
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Default Should I be worried?

Well I tend to spend my time over on the BFS boards but I guess I can't get this ALS fear to go away completely. I know how annoying it must be to answer these questions over and over and I appreciate anyone who takes the time to respond to me here.

I am Male and just turned 28 years old.

I've felt pretty under the weather for about 8 months now. I seem to have ever changing symptoms since then. I started with some pain in my teeth. Went to the dentist, that didn't help. I then went from tinnitus, aches and pains (especially in my groin and armpit), temperature intolerance, easy bruising, etc... This went on for a while until one day I noticed a tingling on the left side of my face. A week later the left side of my face was numb and I've had that symptom on and off since then although it has decreased greatly. I also began getting feelings of warm and cold down my legs and back. I was put on antibiotics twice during this time, once for a possible sinus infection and once because of a tooth extraction. I got a widesprash rash after taking the antibiotics which later went away.

In June my left leg was feeling strange like the knee was giving away much too easily. The leg became a bit shaky. When I'm sitting down I tend to tuck my left leg under and sit on it for long periods of time, so I attributed it to that. Then, over the course of a day ( I believe it was June 20th or so) I noticed my left arm felt really heavy, almost disconnected. I tried to ignore it but at dinner I was holding a salad tong with my left hand and it shook horribly. When I got home I realized my typing ability had severely diminished in that hand and it felt like it was almost impossible to coordinate. My doctor didn't seem to think the hand was any weaker, nor my left leg, but because of my description I was referred to a neurologist and given an MRI of my brain, neck, and spine. There was nothing found in the MRI except for a slightly bulging disc in my neck which my neuro felt was not clinically significant. I was also given a spinal tap and the only thing found was a higher than normal WBC (7, normal range 0-5). It was discovered that I had high blood pressure so I was put on lisinopril.

My relief at the time of not having a brain tumor was significant. Since my clinical exam was basically clean despite some brisk reflexes I tried to ignore my left side the best I could. Over several weeks I was able to type properly again and use my arm. Around 3 months ago I noticed I was getting really dizzy all the time. I felt really unbalanced and felt like I'd fall constantly. I felt like I was being pulled to the right. It confined me to my bed for a couple of weeks.

I also began to get the impression that my tongue was swollen. It felt so large in my mouth and felt stiff. I had no problems eating or speaking, but the "coating" on my tongue was wearing off in certain spots, a problem which I now attribute to clenching/grinding my teeth at night. My tongue would sometimes ache when I woke up in the morning.

I then began feeling an unbearable nausea. This went on for about 2-3 weeks and no matter what I took the nausea would not stop. I ended up getting an endoscopy and a colonoscopy which revealed some inflammation (specifically villi atrophy and duodenitis). I was suspected for celiac disease so I started avoiding bread and was given several blood tests for celiac, which all came back negative.

Then I began getting horrible chills constantly. I was constantly shivering and even a ceiling fan in the dead of summer would set me shivering. I would sweat abnormally and that just made me even colder. My temperature was pretty stable during all this, no fever. I began having trouble keeping food down...my stomach would get very bloated and I would often times vomit 12 hours after eating. My gastroenterologist ordered a gastric emptying study and an abdominal ultrasound. I was diagnosed with delayed gastric emptying (gastroparesis). I began feeling a burning feeling in random spots all over my abdomen. This went on for a week or so. Around this time I also came down with epidydimidis and was put on antibiotics yet again.

A little over a month ago I felt one night that my blood pressure had skyrocketed. My head was pounding so bad and I felt a vein appear in my lower lip, pulsing. I felt dizzy as well. I took an aspirin and fell asleep. The next few days I felt a stinging pain above my left eye. Over these same few days I noticed a shakiness in my hands, and my whole body in general. I woke up one morning and my typing was REALLY bad, in both hands. It felt lousy and uncoordinated, and my right pinky would not do what I wanted it to do. I noticed my arm was twitching on and off and I started googling symptoms, of course stumbling upon ALS. I looked at my calf muscles and noticed both of them twitching violently and this sent me into a full blown panic. I went to the ER and they gave me some valium which calmed me down a bit. My twitching is widespread, pretty much everywhere except my tongue.

I was able to get into my doctor fairly quickly and she did a basic neurological exam and said I seemed fine. She referred me back to the same neurologist. My clinical exam was again normal despite the brisk reflexes and I stayed there to get an EMG. She told me the EMG was slightly abnormal and that she can't rule out ALS. I freaked. She sent me to an ALS specialist to have the EMG repeated and to get his opinion. I spent the next 2 weeks in sheer terror, but I tried to walk every day and keep eating. My hands and shakiness recovered quite a bit and I was again able to type correctly. When I went to the specialist they conducted a more thorough clinical exam and he said he didn't think the EMG was clinically significant and that I'm "strong as an ox". Regardless, he decided to repeat the EMG. When he did the EMG he said he noticed the same things as her, that my muscles were slightly irritated but pretty much everywhere. He said there were no fibrillations and that many people would have similar looking EMG results and that he didn't believe this to be a disease process. After freaking myself out for weeks about speech issues and my tongue, he tested the strength of my tongue and said it's "super strong" and then he sent me on my way. He didn't EMG my tongue though because it doesn't twitch.

So I've been trying to work through my fear but I'm still having several problems that I'm concerned about, mostly related to my throat and tongue.

- First, I get the feeling like my tongue is intermittently swelling and going down. I notice a change in the general size/thickness day to day, it seems to go up and down and sometimes I am biting the sides of it, others not. I have felt this way for months now, even before learning about ALS.
- I've been sticking out my tongue quite a bit and examining it, even before learning of ALS. A couple months ago I noticed that it started to appear longer and more pointy when I stick it out. If I relax it after sticking it out it takes on the normal round appearance that I'm used to. I noticed that I could now touch my nose with my tongue when I have never been able to do that in the past. I can also now roll my tongue which I have never been able to do. I can also do this thing where I can flex the center of my tongue and flip the whole thing to either side....when i do that it seems the sides of my tongue "cave in" and my tongue has a very thin appearance. There is a small dent on the tip of my tongue as well.
- I noticed the very tip of my tongue was deviating to the right (I noticed this a few months ago before learning of ALS). This is only when making my tongue into a fine point. This seems to have vanished or is only very slight now.
- Others have told me I have a huge tongue, they say it resembles Gene Simmons when I stick it out. The problem is I have never heard this before. I have always had a pretty short/fat tongue when sticking it out. Now it's long and thin.
- When I wake up my tongue feels really tired and when I'm eating often times I feel like it's a chore to move the food around, and while I can do it, it feels labored. When I speak it begins to feel a bit tired as well. I can poke it against either cheek and move it quickly side to side.
- It feels weird when I'm speaking. Other people swear I'm not slurring but my tongue generally feels clumsy.
- When I swallow my saliva there is often a popping feeling in my throat. If not a popping I generally feel like I keep having to swallow and like I can't get it down.
- I can swallow liquids perfectly but when I swallow food a lot of times I feel like it's getting stuck on the back of my tongue or in my upper throat and I have to swallow again to get it down or take a drink.
- I seem to be getting a lot of post nasal drip, even in the middle of eating. I'm constantly having to clear mucus from the back of my nose and I get kind of a burning "water in the nose" feeling off and on. I haven't noticed any liquid come out my nose but I am worried that there is saliva/liquids getting into my nasal passage.
- My neck feels strange on the left side...kind of a pressure feeling. If I turn my head to either side my head shakes. I've been doing neck exercisees and I can hold my head up for a full minute with my neck muscles but it does start to shake quickly.
- Both my hands seem to have a bit of a tremor off and on throughout the day. If I lean on my arm there is quite a bit of shakiness.
- I've been getting pain in my upper back when walking and when I hold my arms in the air my back starts to shake a little.
- I wake up every morning with my teeth clenched together tightly, sometimes while drifting to sleep I bite down on my tongue and wake myself up. I believe this clenching has pushed all my teeth forward. I open my mouth when I wake up and my jaw pops for a while. I can tell from pictures that my front teeth have been pushed forward quite a bit. My jaw is noticeably misaligned. My lips look a bit crooked now when I talk and I think this is related to my jaw. My smile is symmetrical. There are prominent teeth marks on my tongue upon waking. Sometimes I wake up with my jaw/neck trembling horribly.

A few things about my medical history:
- My vitamin D was found to be 11 which is very low, I am taking a supplement of 5000 IU a day.
- My SED rate is slightly high and so is CRP.
- CPK is normal.
- I've been tested for Lyme and it was negative.
- I was put on zoloft to try to manage my anxiety.
- I am taking lisinopril for high blood pressure.
- I have had arthritis since I was 19. Over the course of a few days I felt a strong burning feeling in all my joints and they began cracking horribly. I was told something had damaged my cartiledge. I have struggled with joint pain and stiffness off and on for 9 years, even having a positive rheumatoid factor at one point (which is now normal).
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Old 11-25-2011, 01:52 AM #2 (permalink)
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Default Re: Should I be worried?

You should be worried but not about ALS. I fell asleep part way though your story but when I woke up again it still didn't sound ANYTHING like ALS symptoms.
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Old 11-25-2011, 01:53 AM #3 (permalink)
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Default Re: Should I be worried?

Man it took less time to read the Bible. From what I read, you don't have ALS. Think you need a good rheumy though.

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Old 11-25-2011, 01:59 AM #4 (permalink)
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Default Re: Should I be worried?

Yeah I'm sorry it got soooo long. Thank you for reading and answering. I'm just so fixated on my tongue. I stick it out like 300 times a day . Everyone is like PUT YOUR TONGUE BACK IN YOUR MOUTH. Is it possible to make my tongue longer by pointing it out constantly for months? What would tongue atrophy look like anyway? I've never seen a good picture of it. And is it possible to get atrophy and still be able to move your tongue quickly and pass strength tests?
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Old 11-25-2011, 02:05 AM #5 (permalink)
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Default Re: Should I be worried?

As someone who's tongue has been dead for two years let me say this, if your tongue is atrophied it's going to be weak and if its weak then no you can't move it quickly or perform any feats of strength with it.
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Old 11-25-2011, 02:14 AM #6 (permalink)
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Default Re: Should I be worried?

Does atrophy occur as a result of weakness or is it a seperate process? Would my tongue be paralysed before any atrophy or is it possible to have a semi-functional tongue with atrophy? I see so many posts on here of people saying they have atrophy/wasting but they don't have clinical weakness. Do they just not know what atrophy is? When I'm eating my jaw is pretty uncoordinated. Could this be due to the clenching? Is it normal for my tongue to feel strained when moving food around my mouth? Also, does a person start to slur after their tongue is measurably weak or is it before that? Sorry about all the questions but I've been so confused about the order these things present themselves.
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Old 11-25-2011, 03:30 AM #7 (permalink)
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Default Re: Should I be worried?

Quote:
Originally Posted by perform View Post
Does atrophy occur as a result of weakness or is it a seperate process? Would my tongue be paralysed before any atrophy or is it possible to have a semi-functional tongue with atrophy?
Atrophy occurs because the body starts to "reclaim" the components of the tongue. The body begins this reclamation project when the bundles of muscle fibers that make up the tongue become disconnected from the rest of the neuromuscular system after the lower motor neurons controlling those bundles die.

The immediate effect of lower motor neuron death for any muscle is weakness, because a portion of the muscle fibers that make up that muscle can no longer be brought into action. Atrophy is the long-term effect of lower motor neuron death -- muscles that no longer do work are not given resources to maintain their ability to do work. Make sense?

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I see so many posts on here of people saying they have atrophy/wasting but they don't have clinical weakness. Do they just not know what atrophy is? When I'm eating my jaw is pretty uncoordinated. Could this be due to the clenching? Is it normal for my tongue to feel strained when moving food around my mouth?
Not all muscle atrophy is caused by denervation. Reduce the amount of exercise you do -- muscles will start to atrophy. Reduce your calorie intake below what your body is using -- your body may start breaking down muscle tissue to use as fuel. Break a bone or damage a joint and end up in a cast -- the muscles around an immobilized joint will shrink because they are not being used.

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Also, does a person start to slur after their tongue is measurably weak or is it before that? Sorry about all the questions but I've been so confused about the order these things present themselves.
Slurred speech is the classic symptom of tongue weakness. The weakness prevents the tongue from moving properly and some of the vocal sounds that require precise movements of the tongue can't be made properly by the weakened tongue. Hence, the slurring.

And I concur with Al and BarryG -- doesn't sound like ALS to me. Furthermore, to turn out that much material about things that are totally irrelevant to ALS -- you've got way too much free time on your hands.
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Old 11-25-2011, 04:04 AM #8 (permalink)
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And I concur with Al and BarryG -- doesn't sound like ALS to me. Furthermore, to turn out that much material about things that are totally irrelevant to ALS -- you've got way too much free time on your hands.
Agreed. Thank you for the response! I am just gonna go into wait and see mode and try to keep eating/exercising and see how it goes.
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Old 11-25-2011, 09:27 AM #9 (permalink)
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Default Re: Should I be worried?

Your issues aren't neurological--see a Rheumologologist and see if it can't get sorted out. You're young for high BP and for arthritis--so see i there is possibility a metabolic cause for both--and even causing the muscle excitability seen on the EMG.

ALS shows very specific findings--none of which are in your long post.
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