my story

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joepar

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Learn about ALS
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In April I was sitting down to watch some Netflix and all of a sudden my left thigh went off like a Christmas tree with fasciculations. A few minutes later my right thigh started doing the same thing. I was totally freaked out, because it would not stop and it was so intense. It stayed like this for a few days and needless to say my anxiety went thru the roof. I was not able to sleep which made it worst.

At this time I started buzzing (vibrating) from to head to toe, but mainly my inner thighs were vibrating the most. It felt like it was radiating from my lower abdomen. At night the symptoms were the worst. I would have to put a pillow between my legs, because when they touched it was a double whammy. The fasciculations slowed down, but continued at a moderate pace. My whole body became very weak and tired. I could hardly stand and walk, felt like I had scare tissue in my thighs. First time in a wheel chair legs were so weak felt they were going to give out at anytime when I stood.

I have always been trying to keep myself in shape ,working out with weights ,doing cardio, tennis ,golf and chasing grandkids. Rarely go to the doctor. During this time I went to the ER twice. Every test came back normal and was given an iv and released. At this time I started having random fasciculations all over my body, but mainly in the thighs. Went to a neurologist in May and was treated for a essential tremor and had an EMG upper and lower that came back normal. Also had an brain MRI and it also came back normal.

Was told that everything was fine as far as the test went and to get back to living my life. So I started pushing myself to walk each day and got back up to doing 3 miles a day, but my legs still felt weak and I was still having fasciculations all over. Finally started feeling stronger at the gym and was back in the grove. Then I noticed my muscles would really start aching like I had never felt before. The symptoms meanwhile remained.

Then in October that buzzing feeling that was radiating form my lower abdomen started moving up in my stomach and with it the intense fasciculations started in my stomach and back and it continued moving up into my chest which it began the twitch more along with my shoulders ,arms, neck, throat and face. Then my thighs have started to atrophy along with forearms and shoulders.

Needless to say my anxiety is thru the roof and sleeping that was already bad is worse. Weakness in body has returned and feel like I am back to square one. Seeing Neurologist Dec 1st. Also made an appointment with a Rheumatologist. This stuff is crazy. Wishing you all the best.
 
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affected

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Apr 26, 2013
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Lost a loved one
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05/2013
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lala land
Sorry for what is going on with you.
I hope you get some answers soon - this is not even the tiniest bit like ALS.

You asked no questions, but I just wanted to acknowledge that you posted and wish you the best. Being here really won't help you at all.
 
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