Almost 3 years

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Almost 3 years

Postby ucdguy88 on July 1st, 2014, 8:42 pm

Hi Everyone,

I haven't posted in quite a while but I wanted to give you all an update.

I came here in October or November of 2011 with pain in my shoulder that would radiate and my twitches started. It was like a 4th of July spectacular in my body that came along with stiffness and cramps and weird "zaps" all over. It felt like I was losing control of my body and I couldn't stop googling symptoms. Twitching tongue? Been there and still there.Dents in your hand and twitching in a spot with that dent? Still have that. You name it, I've had it. This started when I was 23 and I'm 26 now. It's almost been 3 years since my first twitches all over and guess what? I'm still walking, breathing, and no atrophy! No weakness, nada.

Feeling like there's weakness is another story. I remember the days my legs were so stiff I had shin splints and my right hand hypothenar wouldnt stop twitching and my tongue would twitch, all I wanted to do was cry and get drunk- okay more so the latter but you have all been there. It's a terrifying thing to think you have some insidious disease just waiting to paralyze you, guess what? EVERYONE here has. At one point I had a brain MRI for MS exclusion and they found some demyelination of white matter in my brain but guess what, it wasn't MS! Just because there is a particular symptom- in our case muscle twitch, fatigue, and stiffness, does not mean A**!

I felt like coming back here to update you because I'm going through a bad spell lately with having symptoms all over and in places i NEVER have. Some things that have worked for me: Avoiding Alot of Caffiene, No Alcohol binges (the next day is HELL), Vitamins ( D is a MUST) and finally, my favorite benzo, klonopin. I think that BFS is a huge umbrella term for nerve hyperexcitability and we all have a mild, medium, or severe form that waxes and wanes.

But just remember, keep your chin up, connect with others on here (BobaJoJo and MommyLondon saved my life) and know you are not alone.

Best Wishes,

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Joined: November 17th, 2011, 2:11 am

Re: Almost 3 years

Postby German2 on July 3rd, 2014, 4:49 am

Dear ucdguy,

your post was really reassuring for me and helped me a lot! Especially that part with the dents in your hands, that keep on twichting. I have exactly the same and a lot of other odd symtoms. But the mentioned one is the one which scares me most. I have those weird symptoms sind about 20 month. My twitching episode started about one year ago...In my MRI they also found one white spot, but they think it's meaningless because when I would have ms, it should be more...
Your story gives hope to me, that I am also still alive in a few years, without any sinister to develop....
Thank you!
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Joined: March 3rd, 2014, 9:51 am

Re: Almost 3 years

Postby Nytviolet on July 3rd, 2014, 6:35 pm

I know these are older posts, but I also became OBSESSED over a "Dent" in my left foot (on the inside of the foot, near the arch). I noticed that the musculature was less dense than the same spot on my right foot. When standing on my tip toes directly under a bright light (geez, I sound like a circus performer lol), I could see an area that truly looked atrophied. Turns out I have plantar fascitis in that foot, and there is often severe pain from wearing flat shoes (I have very high arches, and flats aren't a good idea). I've had EVERY symptoms you've had, and am still here too. ***Praise God for this website***
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Almost 3 years



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