My story....

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My story....

Postby StillTwitchin on August 16th, 2013, 2:47 am

I have just reached my one year anniversary of twitching and im still breathing, and on my own! And I have great news, everything is gonna be OK, and it will be OK for you too.

Here is my story, in July of last year I found a lump in my neck, went to the internet, and diagnosed myself with either lymphoma, or pancoast lung cancer, lol, all funny now. Went to my general, he had no answers, scheduled MRI of neck. Maybe a coincidence but during my MRI I had crazy fasiculations all over abdomen and shoulders, weird, I know. So results of MRI are normal, now I can relax, right? Not really....now I have fasiculations, and widespread, but primarily in lower legs, biceps, and face.

So what do I do, head to the internet, great, now I have ALS. After three months of twitching and severe anxiety I call my general, new doc now due to insurance. She does a limited neuro exam in October, everything is normal, but does witness my fasiculations in left shoulder, twitches I couldn't even feel. She sends me away, takes me off of potassium wasting diuretic for high blood pressure, and tells me to call if symptoms persist.

Two months later im still twitching like crazy, but now its everywhere, and constant! She orders an MRI of the brain in December, have MRI, twitch like crazy during MRI again! Results come back as normal, great, now I really have ALS, because most all brain MRI's for ALS are normal, now im really freaked out. From here on out its all gloom and doom, I feel what is perceived as weakness in left calf while running. Start doing all the self stress tests of muscles, hoping up and down stairs on one leg, jumping multiple stairs at once, stress testing fingers, hands, wrists. Im just waiting for the foot to drop, Im gonna die. Suddenly im having trouble swallowing and it seems im choking on liquids or foods like apples that are juicy and solid at the same time. Im going crazy, not sleeping, twitching like never before. Then all the sudden my tongue twitches, head to Dr. Google, great! Now im convinced its bulbar, im gonna die. Looking at my tongue in mirror and its twitching like crazy and I noticed I have a scalloped tongue, gonna die even sooner now.

By now im totally convinced I have ALS. Im checking youtube for videos on how im gonna die and life expectancy. One day im in traffic and see that a car in front of me has ALS in the liscence plate and start to freak out. Then im reading the obituaries at work to see if there is anyone i know who has died(I work in the medical field, and see people die all the time) and I come across someone who has died of ALS. Then I learn about some guy from Spokane who played pro football for the Saints and now has ALS, so im convinced something is in the water! Then I learned that my neighbors husband died of ALS, so I talked to her about what kind of symptoms he had. I even began to think about my two kids growing up without their father, and that maybe I should begin writing my memoirs. This is how crazy and obsessed I became.

Fast forward to June, still twitching, everywhere, all day, everyday. Call my doc for a referral for Neuro. Neuro calls back and schedules me with and appointment for exam and EMG, thank god, feel better already. Late June comes, freaking out on day of appointment. Meet Doc, nice guy, from Brazil, weird hearing accents in Spokane, lol. We begin an dialogue, he takes lots of notes, then gives full neuro exam with muscle resistance tests, hot vs. cold, and vibration, all normal. He then performs EMG with some machine that he said is brand new and top of the line, reassures that if i have ALS he will see it. This exam sucks! First he wrapped me with wet towels and electrocuted me for nerve conductivity test and then stabbed me with needles into major muscles and applied resistance while I flexed to test muscle atrophy, all was normal, even the tongue which i made him test. After the clean EMG he ordered extensive lab tests, some that he even sent off to the mayo clinic for the rare and scary stuff.

On month later I followed up with my neuro, and all was good! Labs came back normal, did quick stress test, all good. He sent me away with a clear conscience, which was worth a million bucks in my book. He said at one year I would definitely being experiencing some muscle atrophy if I had ALS, and could assure me that there was less than once percent chance that I had ALS.

One year later from my initial onset of symptoms I still twitch, just not as much, my left elbow seems to be a hot spot, but now I can brush it off. Today I talk about BSF in the hopes that I can help someone else. I am going to be ok, and so will you, hang in there.
StillTwitchin
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Re: My story....

Postby RGB on August 17th, 2013, 8:50 pm

Thanks for telling your story in such a positive way. Eventually there will be enough of these stories on the www to show the googlers that nasty neurological diseases are very, very rare and BFS is just uncommon :)

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
RGB
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Joined: February 6th, 2013, 1:07 pm

Re: My story....

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