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Multiple Sclerosis Message Board


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Hello arijj,

After reading your first post I was a bit surprised… It was like looking in a mirror.

We both share a lot of the same symptoms; same age and have no idea what’s wrong!
My story started back in 2009… or perhaps 2008 depending on how you look at it.
It started with what I thought was a simple pinched nerve. After a long drive (4-5 hrs) my left leg started getting a tingling/numb and burning feeling, not extreme but it was there, very similar to what you would expect with a slightly pinched sciatic nerve. As time progressed, I would start getting those symptoms after driving less and less until I’d start getting them after 20-30 mins of driving.

About 3-4 months after that and started having the tingling/numb and burning sensation full time. Then I started getting double vision. I went to the Dr. and had an X-ray done as the assumption was that I had perhaps a slipped disc in my back that was causing my sciatic nerve to be pinched. Results came back as nothing. My Dr. told me to visit my local Optometrist, which I did. After a complete eye exam she said my eyes were perfectly healthy… BUT my right eye would ever so slightly roll inward for a split second. She requested that I go see a Neurologist ( who found nothing wrong ) and an eye specialist as she was stumped by the cause.

While walking around the mall before my appointment my left leg would get an intense burning sensation that caused my leg to buckle at the knee, as time went on it would buckle after very little walking, causing me to use a cane to keep from falling.

The eye specialist I saw did a complete rundown with his colleague ( an eye surgeon ) found my eyes to be completely healthy but again mentioned my right eye rolling inwards. He was positive my issue was a nerve related issue.
From there I saw 2 more Neurologists, a Nerve Conduction specialist, a Neuromuscular specialist, 2 head, brain and neck CT scans with contrast, a spine CT scan, a spine MRI and FULL blood workup to check for “everything I can think of” all coming up with nothing.

As of now some “new” symptoms consist of:
Loss of balance: At times when standing it feels like someone has given me a gentle push that sets me off balance.

Muscle spasms: Worse at night, my left leg tightens up like a very bad charlie horse, bad enough that it wakes me up from sleep.

Numbness: Left leg at all times.

Difficulty beginning to urinate: At times it takes up to 5 mins before it starts flowing.

Difficulty reasoning and solving problems / memory loss: I attempted to go back to school and take some upgrade classes. I would understand the content, start doing math problems and have no trouble. 5 mins later I’d completely forget how to do the problems ½ way through a problem, causing me to go back and re-read my notes and re-work already completed problems to see how I had done the last one. I also need to use a medication planner as I would take a pill and forget 10 mins later if I had taken one or not.

Slurred or difficult-to-understand speech: Somewhat rare but at times what I say makes no sense when I speak it, tho it makes sense in my mind before I say it. I find it very embarrassing as after I’ve spoken I wonder what the heck I was talking about. Other also look confused when it happens.

Headaches: Very bad tho I think they may be caused by the double vision and the strain that comes with it. I notice that I can make my eyes focus for a second or two if I concentrate but it just makes the headaches worse.

At night when trying to sleep ( have trouble sleeping, I go days without it or sleep for hours on end other times ) I get a tingling sensation from the neck down, it feels like a vibrating sensation like I was standing by an off-balanced washer / dryer. When I touch my body I don’t feel any vibration or movement, it feels completely inside me.

I also get… the only way I can describe it is an extremely bad hangover that last for days or weeks at a time.

There is a whole bunch more I’m sure that i’ve missed but this is already VERY long. If anyone has any suggestions on what I can do or what this may be so I can suggest them to my Dr. I’d really appreciate it.

I’d also love to see what you find out arijj. Thanks for listening.





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