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Old 06-10-2015, 08:39 AM #1
waterdog1979 waterdog1979 is offline
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Default Doctors think I am just a hypochondriac :)~

Hello...

I am 35 y/o male that works in finance with a one year old daughter and two and a half year old son. I started having issues typing with my left pinky and ring fingers back in Nov of last year (2014). I now have mild atrophy between my left thumb and pointer fingers with fasciculation’s that are visible, but I can't feel them. Weakness has spread to my right hand, but my bi’s and tri’s on both arms seem to be unaffected at this point besides feeling weak and crampy. I also have body wide fasciculation’s, some I can feel and others I don’t, but my hot spots are my feet and hands which are constant. My face also shakes when smiling and my tongue shakes when I open my mouth. My throat has been sore with tons of drainage, and I feel a lump in my throat most days. My body cramps and twitches all of the time, and I get tired very easily. If I go for a walk, the next day I feel awful. I have had an EMG which showed fibrillations, insertional activity and positive f waves in my left hand all of which were +1. The neuromuscular specialist I saw blew me off, because she thought I was too muscular. But, I feel like both of my hands lose that much more ability every day. As I type this, both hands are shaking and are having major coordination issues. My legs are sore and shake constantly as well along with other body parts. Besides that, all of my muscles will fatigue and quiver with little exertion. I have had blood test for everything under the sun, but nothing has come back positive except I was at a 1/160 titer for autoimmune antibodies which didn’t bother my neurologist. I have also had an MRI which was negative for MS. I have another appointment with a new neurologist on the 22nd of June, but I assume it will still take a while to get a new EMG ordered. If I look up my symptoms, Dr. Google says I have ALS or something similar. I am not saying I have ALS, but I can’t think of many other things that could produce the same symptoms. I know forums aren’t where you come for a diagnosis, but I was hoping there might be someone who has had a similar experience and can provide some insight.

I feel like my symptoms just keep getting worse, but the two neurologists I have seen think I should just exercise more and try to relax. Unfortunately, I haven’t been able to work out in months without feeling like I just raced a marathon. Believe me, shaking while lifting weights isn’t the best combination. For now, I am just waiting for something bad enough to happen that someone will take me seriously. I just wish a doctor would listen without bias. I have a good job, great kids, and a wonderful wife. I am not sure why a doctor would believe I want to spend thousands on an MRI, EMG, and other tests just for fun. I am very frustrated to say the least.

Thanks for taking the time to read my post.

~Waterdog1979
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Old 06-10-2015, 01:47 PM #2
caroline2 caroline2 is offline
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Hi, I've read your post and I'm Older, 77 soon. I worked about 40 yrs and never had any of the issues you mention. I did have first signs of OA in lower back at 18, but got on with my life. Back in my days, computers were just coming on, I hardly used one until mid 80's when I worked for Hitachi and we used apple. I resisted the technology and computers from day 1, but again I'm Older...Many of my friends my age, NEVER even got on the computers...

I don't know and no one will ever know if all this technology has done more damage than good. I do enjoy my desktop, but use no other technology to speak of. Very basic and old thinker on high tech, but I am a "thinker"....

I've been taking grape seed extract, powerful antoixidant, for 20 yrs soon. This can't hurt you but sounds like a lot more going on.

Magnesium deficiency is alive and well out there and you mention cramps, muscles etc..check out magnesium in your blood levels for starters. This comes to my mind first on all you mention.
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Old 06-10-2015, 02:50 PM #3
waterdog1979 waterdog1979 is offline
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Default Thanks!

Quote:
Originally Posted by caroline2 View Post
Hi, I've read your post and I'm Older, 77 soon. I worked about 40 yrs and never had any of the issues you mention. I did have first signs of OA in lower back at 18, but got on with my life. Back in my days, computers were just coming on, I hardly used one until mid 80's when I worked for Hitachi and we used apple. I resisted the technology and computers from day 1, but again I'm Older...Many of my friends my age, NEVER even got on the computers...

I don't know and no one will ever know if all this technology has done more damage than good. I do enjoy my desktop, but use no other technology to speak of. Very basic and old thinker on high tech, but I am a "thinker"....

I've been taking grape seed extract, powerful antoixidant, for 20 yrs soon. This can't hurt you but sounds like a lot more going on.

Magnesium deficiency is alive and well out there and you mention cramps, muscles etc..check out magnesium in your blood levels for starters. This comes to my mind first on all you mention.
I have had 19 different tests for magnesium, thyroid, all vitamins, lyme, and others. All came back right in the middle except for my AMA which was slightly elevated. I take a number of vitamins everyday to make sure my vitamin levels are good including 800mg of magnesium. Thanks for the suggestion! I really appreciate the reply.
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Old 06-10-2015, 03:27 PM #4
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Welcome waterdog1979.

Anyone in our family have symptoms such as yours? Thank you.
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Old 06-10-2015, 04:26 PM #5
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Well the arm/hand/fingers could be some sort of RSI (from weightlifting and or /repetitive / desk work / lot of phone holding/crook of shoulder/neck? ) or sounds a bit like thoracic outlet syndrome, but the rest of the body is rarely affected unless you had TOS for a very long time.
*forward head/forward or hunched shoulders??
http://neurotalk.psychcentral.com/album.php?albumid=422

TOS useful sticky thread for info on that condition-
http://neurotalk.psychcentral.com/thread84.html

* sticky fascia /myofascial syndrome can eventually spread body wise as it the stuff that holds and wraps the inner body *

I don't knwo if it is all a single condition , or a combination, after reading more about TOS you might be able to tell if it might be a fit or not...
Many drs do not fully know about TOS, so if you think it might fit, find a TOS specialist..
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Old 06-10-2015, 05:47 PM #6
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Lightbulb

If the magnesium you are using is the OXIDE form, it will not work for you. The oxide does not dissolve (ionize) in water, so remains in the GI tract never to get to the muscles and other tissues at all.

This is my magnesium information:

http://neurotalk.psychcentral.com/thread1138.html

You also need to know your B12 actual testing results. This is because labs report low levels as "normal". If you are below 400pg/ml...you are low and that leads to nerve damage.
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Old 07-12-2015, 12:05 AM #7
wesker17 wesker17 is offline
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I'm no doctor but I do know a lot about ALS and I can say that ALS has a very 'classic' pattern that shows on EMG and for it to be ALS all of the pieces of the puzzle have to be there. Muscle twitching can be anything or nothing and is most likely nothing when it's all over your body. People with ALS twitch in the place they have weakness AFTER a muscle fiber goes limp and becomes useless. Twitching in ALS is the distress signal of muscles that have lost their connection to their motor neurons. So if you can flex a muscle that is twitching then that 100% means it's not ALS. Benign Fasciculation Syndrom or BFS is a long term disorder. A lot of people don't know that BFS often stays with you for a long time before stopping even years. What you have is most likely a combination of things and not ONE thing. Maybe is CFS? Also it's common to have light atrophy in a hand/arm affected by Carpal Tunnel.
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