I THINK I HAVE ALS. I'm 23 years old.

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Hello all. I'm a 23 year old African American male. Just recently (sunday), I felt a numb tingly sensation in my lower right leg. It also felt very heavy, like it was made of sand. I thought nothing of it. It lasted for 15 hours so I went to see a doctor. She gave me meds sent me home. The next morning the feeling spread to my thigh, and the next day the numbeness went away bur both legs felt numb. I was then called back to the doctor. They took an mri, catscan, and and blood tests. All came back positive, except my CK level was a little high (around 900). I have never never been sick and my family has no history of neuro disease. It has been 6 days since my leg went numb. The sensation is now in my hands and they too are heavy and to use. Possible ALS???

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  • Posted

    Thanks for the reply Heather. My doctors say they sent off a bunch of blood work they ate waiting to get back. I wokeup this morning and my legs were even heavier. I can still wall but I notice myle leg strength fading. It is also noticeably more difficult to brush myle teeth and text. Does ALS progress this fast? It hasn't even been 6 days since is felt the initial weakness.
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    • Posted

      So sorry that you are going thru this, Aaron. I'm not a doctor but my understanding of ALS is that it's very slow onset and insidious, so much so that it can take years to diagnose. So I think you can put those fears to rest. Lots of things can set off your nerves -- vitamin issues, thyroid, Lyme disease etc. but look up Guillain Barre too. It's sudden onset and tends to start in the legs and move upwards. I know as I have it. See if it fits and if so, check in with your doctor. Good luck and keep me posted!
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  • Posted

    Thank you for your reply. My doctors think it's Gillian Bare syndrom, but the disease hasn't really progressed fast enough, and my spinal tap was clear. It's been close to a week now. And I'm noticing lost mobility in my fingers; especially in my left hand. It feels like normal activities are more difficult. I'm very scared. All of my mri, blood tests, and taps look good. They still have no diagnosis for my problem.
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  • Posted

    Hi again. I'm so sorry for the delay. I wrote a long response to you yesterday but it didn't go through, so this will be short to see if it works (then I'll write more!)
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  • Posted

    OK. Phew. I'm so very sorry that you are going through this, Aaron. I was right where you are now. The GBS diagnosis came 5 months in after they had exhausted everything else, so it's a "working diagnosis." It does certainly sound like it could be that. It comes on suddenly, cn progress for up to 3 weeks (although if it hasn't gotten extremely bad by now, I think the worst is behind you) and then the slow process of healing begins.  You will get better. You will. But it takes the nerves a very long time to heal -- months to years. So be patient and don't lose heart. The spinal can be tricky. They tested me at day 2, but the proteins only show up in 70% of people and often not unti after day 5 after onset. Did they do an EMG? That rest can also tell a lot, but I know who few people who have assumed GBS and tested ok. At least you know it's not any of the other things, as I'm sure they tewted yu for everything under the sun. I know that you're scared. It's ok. I was terrified. Just try to relax and rest as much as you can. It may get worse before it gets better, but hopefully you're already on the upswing. Please feel free to message me any time. There is some great support out there. You are not alone in this. smile
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  • Posted

    From what I've read this doesn't really sound like early ALS symptoms. The loss of mobility, etc come later on is my understanding of it - so by now I think you might know for sure if you have it. The disease can develop quickly or slowly. Not meaning to alarm you but again this is what I've read. I'm under-going some strange symptoms myself at the moment and should be going to see a neurologist soon as my bloods were normal. I'm hoping for the best though!

    Good luck to you and I wish you all the best.

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