Old 08-09-2017, 12:46 PM #1 (permalink)
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Question First I don't think I have ALS--just need opinions and resources

I'm 32/female. This all started when I was 15 and has slowly, very, very slowly eaten away at my body. I do not think I have ALS. This is way too slow.

My problem areas are all on left side of my body, except for my toes. I haven't been able to wiggle or bend my toes on either foot for about 10 years now.

Something is not quite right with my body. I am just a wait and see patient to any doctor I see. I saw many over the years.

I was first sent to a neurologist in 2006 and when I got there I had no idea why I was referred. They asked me if I had any weakness and at the time I was not self aware at all! They had me stretch out my hands and a doctor asked me what was wrong with my left hand. I had no idea what they were talking about so I said I don't know. I was use to being a weak kid so I denied muscle weakness. EMG was normal.

in 2010 I was again sent to a neurologist, but this time it was a neuromuscular doctor. I haven't had ankle reflexes since this time. She did A LOT of blood work and repeated the EMG. Everything came back normal. She told me that sometimes these things take a long time to show up on tests and that I could have something that's unique to my family. I was adopted--no family history.

2015 I had bilateral TMJ joint replacements. it's been almost 2.5 years and the paralysis on my left side of my face hasn't improved at all. Surgeon doesn't think I need to see a neurologist. But he also started that he doesn't understand what happened because I had no paralysis after surgery. It developed while in recovery. This past year, I developed a dent in my jaw muscle so I went back recently to have it checked and they said the implant looks fine, no loose screws, and that "I'm just skinny all over". I was given a muscle relaxer but it made my throat muscles weak and I didn't care for it. That feeling was worse than what I had originally went to see the surgeon about.

2016 I moved across the country seeking medical marijuana. It helps! But I became very, very sick for an unknown reason while out there and almost died. I vomited for 5 days, didn't keep anything down at all during that time, I then went on to developed delirium and woke up a week later in a hospital. Right before going to the ER, I remember I lost my vision and my ability to even get out of bed. I was falling all over the place and my hands, feet and lower legs went numb and had a serious case of pins and needles. I was dying. This doesn't seem normal for a healthy 32/yr old to get that sick that fast. I was kept with other patients suffering from neurological diseases and was told I need to see a neurologist.

The stress of almost losing my life and not being able to care for myself got the best of me and I moved back home to my home state. When I arrived back home my mom was very concerned with how I looked and she took me to the ER. They admitted me and ran some tests. Everything came back okay. I told them that the doctors in the state I came from told me I need to see a neurologist. They disagreed. A month later my mom again took me back to the ER. Again they admitted. Again nothing was found.

5 months later, I got hired at a factory. I had to go through three different doctors just to start this job. They all seemed concerned about something. I had an EMG, and it was pretty much normal. Just slight damage to my ulnar nerve on right side. My problem arm is my left! My family wanted me to go on disability but I'm too stubborn for that. I know--stupid. I am paying for it dearly.

Something isn't right though. I haven't had ankle reflexes for as long as I can remember, my left side is weak and the muscles will not develop. I've been doing push-ups and squats for 3 months, working a job that requires me to move/walk constantly for 12 hours, but my problem areas continue to be the same. No improvement at all. I can't keep running away from this. I need answers. I can't be in healthy relationships if I can't trust myself.

Are there any resources for people like me? What can I do?

Attached are photos of my problem areas, all left side. Except for toes. All problem areas have pain. Left arm freezes up in cold at the inside of elbow.
Attached Thumbnails
First I don't think I have ALS--just need opinions and resources-leftarm.jpg   First I don't think I have ALS--just need opinions and resources-lefthand.jpg   First I don't think I have ALS--just need opinions and resources-leftthigh.jpg  
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Old 08-09-2017, 12:55 PM #2 (permalink)
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Default Re: First I don't think I have ALS--just need opinions and resources

Consider looking into this program
https://www.genome.gov/27544402/
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Old 08-09-2017, 01:00 PM #3 (permalink)
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Default Re: First I don't think I have ALS--just need opinions and resources

Quote:
Originally Posted by Nikki J View Post
Consider looking into this program
https://www.genome.gov/27544402/
Interesting! Thanks!
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Old 08-09-2017, 06:17 PM #4 (permalink)
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Default Re: First I don't think I have ALS--just need opinions and resources

There are some very slow progressing diseases of the muscles and nerves. Did you have a muscle biopsy or lumbar puncture?

The fact that you still have the strength to work and squat makes your case rare. I'd call/write to the group in Nikki's link.
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