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niceguy

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Hi everyone,
I'm in my late 20's and I've been hit with several physical problems staring in early December of '06. I've never done drugs, I don't drink, I don't smoke and I've never been on any type of medication for anything but the common cold or the flu. I've had a poor diet most of the time, drinking soft drinks and eating unhealthy food. I also played video games extensively (I was actually payed to play professionally but since this has happened I no longer play). Prior to this onset of physical symptoms I began to experience strange feelings during extended playing sessions. I would sit back after playing and the arms felt like they weighed 100lbs and they moved very slowly. Following the arm problems a more serious problem occured a few days later: I fell over to my left hand side and my vision was blured to the point that I couldn't percieve anything for about what seemed like 1 - 2 seconds (I was playing the game when this occured). I came back and I didn't have any lingering problems at the time.

Prior to the new physical problems that I have, I've had one noticable issue for the past 4 years. The back muscles spasm, in the same rhythm as my heart beat, sometimes it was so bad that the headboard on my bed would chirp, and I'd have to roll over onto my side to sleep. Fortunately it isn't something that occurs every night (usually once or twice a week).

What I have now is interference with my arms and legs. I don't have speech, swallowing, cognitive / emotional control problems, twitching in the hands, arms, legs or feet.

- What I do get now (ocassionally) is a very high speed vibration in my left leg. It's deep in the leg and it's not visible if I look at the leg. The vibration feels as fast as a cell phone or a guitar string vibrating (It'll last for 2 - 3 seconds).

- The arms move akwardly when I try to rub my eye or move my hair. They're not weaker but the coordination has definitely been affected.

- The arm and leg muscles cramp up and or fatigue faster than before. At first it felt like I didn't know how to control them (my arms - even just to lift them up), it almost feels like I need to relearn how to use them. A recent problem occured (today) with sensing my legs; one leg felt shorter than the other for about 5 minutes and it made walking down stairs difficult. This sensatin occured after standing with most of my weight on one leg for about 30 seconds while talking on the phone.

- There's also less variable muscle contraction, they're more like full power or no power at times. If I hold my cell phone the bicep is fully flexed and the arm gets tired in a few minutes.

- Sometimes the right hand or left hand will feel cramped, or my left or right foot. Although this is rare and it has yet to occur in more than one hand or foot at a time.

- I get a pins and needles feeling in my arms very easily (lying on my side to sleep will cause it in a minute or two - both arms). Although one weird thing that I think is associated with this is the fact that my arm pits feel puffy and they're irritated. Also, typing is more difficult as is hand writing (I have to go back and fix a lot of typos).

- The hamstrings felt very tight and I've been doing stretching exercises which have helped.

- The top part of the calves and behind the knee are definitely tight and some days are better than others. At times they're ok while at other times they're cramped up simply walking to my car after work. This also affects my ability to extend my shin because the knee area stiffens up to the point that I need to consiciously push the lower part of my leg forward to walk.

- My balance hasn't been the same and sometimes walking in a straight direction is akward.

- Prior to the arm and leg problems I noticed that my neck was stiffer (about 1 week prior to the arm and leg stuff). I also had and have continued to have an increased inclination to clench my jaw and grind my teeth. The left side of my neck will contract and my lips and toungue will go numb as well, which affects my ability to move my jaw.

- I also experienced significant vision loss in my right eye for 24 hours (about 2 weeks before the muscle problems) and now I've lost sensitivity in a couple fingers and my thumbs (over the past 2 weeks).

At this time I've had blood work done, an MRI of my brain and cervical spine and I had a basic physical evaluation by my neurologist; he said he doesn't think I have MS or "something like it". Strength has been lost in my thumbs (the ability to push them out) but strength everywhere else doesn't seem to have been affected (but my body does fatigue noticeably sooner than before). The next test I'm scheduled for is an EMG. I don't know if I had a TIA (a micro stroke which usually lasts for 24hrs and that's what caused the vision loss?) but the docotrs can't explain it. I also had had flu like symptoms in early august and significant joint pain. My doctor figured it could be lyme (I also played golf on a regular basis) so I took Doxycycline for 20 days and it went away ( I wasn't tested for Lyme until about 3 weeks ago and it cam back negative).


Thanks to anyone that reads this and has anything that you'd like to say about it in regards to ALS or any other related illness you might feel that it is.
 

Al

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Hello Niceguy. Welcome to the forum but I don't think you'll have to be here long. I have no idea what you may have but it doesn't sound like "typical" ALS symptoms. The muscle cramping could be any number of things and the vision problem could have been a TIA. I've seen people have that problem. If you're still doing a lot of gaming just being in one position for hours and using the boxes could explain a lot of your symptoms. We're not doctors here so you'll just get opinions not a diagnosis.
AL.
 

niceguy

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Thanks Al,
That helped a lot (or atleast I think it did). It would also explain why I had numbness, pins and needless in my hands which sounds like carpal tunnel syndrome but I don't have and pain in the hand and my grip strength hasn't been affected.

My forearm muscles definitely cramp up faster than they did before. Depending on the day, one arm is worse than the other and sometimes both feel ok. The same issue occurs in the legs. One day the calves cramp up very quickly and they feel great on other days.

The ability to rotate my forearms seems to be what was affected the most, an that's probably what's interfeering with my ability to rub my eyes, etc.

Thanks again for your advice and we'll see how the EMG goes.
 

mlb

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Hi there

Just wondering if playing extensively video games has anything to do with your symptoms? I happened to read recently an article regarding "Light pollution" and its effects on humans whose jobs expose them to electric light for long periods of time on a daily basis.

Some of the symptoms in an investigation conducted by scientists were quite incredible. From memory, they included sleeplessness, behavioural disorders and physical diseases.... I will try and locate the article for you if you like.

Anna
 

niceguy

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mlb said:
Just wondering if playing extensively video games has anything to do with your symptoms? I happened to read recently an article regarding "Light pollution" and its effects on humans whose jobs expose them to electric light for long periods of time on a daily basis.

Some of the symptoms in an investigation conducted by scientists were quite incredible. From memory, they included sleeplessness, behavioural disorders and physical diseases.... I will try and locate the article for you if you like.

Anna
I'd definitely like to read the article if you come across it.

Thanks
 

niceguy

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Hi Anna,
Thanks for the article on the light pollution. I'll mention it to my doctor (neurologist) during my appointment.

I've also been looking into the benign muscle fasciculations and I also match up with some of those problems. Most notably, my muscles / body feels noticeably worse for 24 - 48 hours after a workout. Arms are stiff, muscle coordination is off, calves are stiff. The thing is I don't have any twitching in my hands, fingers, or feet at this time, just the very fast vibration feeling in my left leg and groin area (lasts for a few seconds and happens every other day).

As for other things in my arms... I noticed that I have obvious pain in the left forearm muscle (the underside of the forearm) about an inch below the elbow (they also fall asleep very easily and the underarms have felt fat).

I also forgot to mention that I've always had irritated skin up around the shoulder area and it was noticeably more irritated at the start of my problems. And starting around August of '06 (about 3 weeks after the initial Lyme symptoms) I've had a noticebale increase in Saliva thickness, especially after eating. I'll feel the need to clear my throat for about 30 minutes after eating (no problems swallowing the food - just the thick saliva).


Thanks again
 

mlb

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Good morning Niceguy!

It would be helpful if you had a list of your symptoms in writing when you visit your neurologist. Mentioning the rash on your shoulders should be given special importance as as you say it was at the beginning and before any of your symptoms started. Rashes, skin irritations or any skin eruption often are indicative of an underlying illness and in my opinion should always be investigated.
I am glad you are here on this forum and glad that you are seeking answers by asking and researching. It is best to be informed and educated on the possibilities so you can actively participate in matters relating to your illness.

Good luck with your appointment. Be sure to let us know the outcome.

Take Care.
Anna
 

niceguy

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Thanks Anna,
I saw my neurologist today and I did bring a list of the symptoms. It's way too much to remember in the course of a doctors visit.

He rattled off a few different things that I've never heard of and he prescribed a muscle relaxing drug. He said that I have too many symptoms to fit into any of the specific things he thought it could be, and he asked me several times if I know of any family members with any muscular diseases. I told him that no one that I know of on either side was in a wheel chair or anything like that at an unusal age (anything under 70 years old). I have the EMG in a couple of weeks and some more blood work which should finally start to narrow down what could be causing this.

He asked me if I've noticed any loss of strength with opening bottles, etc and I haven't. I did the finger squeezing test for 1 minute and there wasn't any cramping in either hand (which is good). I think the most important thing for me at this point is to try and relax and wait for the EMG.

The ironic thing is that all of this started right before a huge event that I attended for professional video gaming (very stresfull). Then it got worse after the event.


One thing I'd like to mention is that I have jerky muscle movements with certain arm movements (not always but in the same areas when they occur lately). Same thing occurs with the back muscles if I bend over. Instead of moving down smoothly they'll lock and unlock very quickly (not a tremor) so it's jerky movement that's not really even visible (but I certainly feel it).

I'll let you know how the blood work and EMG go along with a possible diagnosis. The blood work is checking for thigns like CBK and other muscle ennzymes, Lyme, etc.

Thanks again
 

niceguy

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Well I said I need to realx.... I'll start tomorrow :)

I've been doing more research on hereditary disorders and CBK. Huntingtons disease comes up on a regular basis but I don't have memory problems and my behavior hasn't changed - and there's no known family history (which accounts fro 98% of the cases).

Polymyositis is the other thing that came up after researching CBK. Basically the white blood cells don't stop fighting after they encounter an infection. Looking for something to attack... they go after the muscles. It occurs most commonley in the second decade of a persons life and there's a 20% mortality rate (death is more common in elderly people that aquire the disease). The prescribe steroids to help slow the immune system and if that doesn't help they use immunosuppresent treatments.

Polymyositis goes after the big muscle areas first. Which could be a sign with my back muscles and shoulder muscles.

We'll see.... and if the blood test comes back clean again then I'll keep my fingers crossed for a clean EMG.
 

mlb

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I will keep my fingers crossed for you.

Anna
 

niceguy

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mlb said:
I will keep my fingers crossed for you.

Anna
Thanks again and here's some more information I found in case someone searches the forum in the future.

My doctor is definitely focusing on an immune system disorder with the following blood work:
- Comprehensive Metabolic
- CDC with Diff
- Sed Rate
- CPK
- ANA
- Sjogren's Ab
- Aldolase
- Magnesium
- TSH
- Lyme Ab screen / Lyme Ab western blot

The CPK, ANA, Sjogren's, and Aldolase make sense for my various symptoms.

Sjogren's appears to be more eye and mouth related. My eye's epsecially the right one have been dryer since the problems stated (vision loss). But it doesn't explain the other muscle issues.

CPK and ANA deffinitely link up with the the immune system attacking the muscles. ANA has to do with inflamation of the muscles caused by the immune system. CPK is when the white blood cells attack the muscles.

TSH is Thryroid and Pituitary related with under or over activity and it's more of a problem with developing children. But it can alot of my symptoms and my Grandfather had a underactive thyroid problem in his early 30's.

Ok, no more posting until I get some results on the tests (unless someone asks me a question, etc).
 

mlb

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Wow! Very good. Your neurologist is covering a lot of ground.
Whilst waiting for your results, why not take care of your health by eating sensibly, resting your body as much as possible and taking supplements such as Fish Oil (2 capsules three times a day) as an antioxident. This is excellent for overall health as well. Have raw almonds (also antioxident properties) through the day. Just a handful as this will certainly help with your skin problem too.
Let us know how the muscle relaxant is working for you. Do you mind telling us which one your neurologist has prescribed?
Al, suggested somewhere to someone the importance of keeping copies of your test results. I think it is a very good idea to do this Niceguy. Just in case you need to refer to them later.
Anna
 

niceguy

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Sure, the muscle relaxant is: Flexeril 5mg
I'm not going to start taking it unless I really need it.

Thanks for the advice to get copies of the results, I'll ask the doctor for them.

As for the antioxidants and eating better food. I drink Orange Juice, V8, water, grape Juice, and Orange Juice for breakfast lunch and dinner. I'm also eating healthier foods. So I'm trying to stay as hydrated as possible along with getting more vitamins and minerals into my diet. At this point I don't know if it's helping but I know it can't hurt.

Thanks
 
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