My Story of Fasciculations and Fear

[raptor9]

Most of you know my story. Weird (changing?) tongue, fasc for a couple months, Was a constant buzz in toe and calf now mostly one hitters in the same spots on my arms, legs, neck, and back. Frozen with fear....spent a week in a philadelphia mental hospital. Had two clean emgs including the tongue....convinced myself they were done too early (3 weeks). Convinced my voice is different (I'm a singer)and my throat is sqeaking after I swallow. Last week I saw an als specialist who ddn't do an emg but had my old labwork in hand. He did all my reflexes, looked at my tongue, did the whole routine and told me I was fine.

Last week I made a promise to myself. I said "listen Bri, now that you have insurance I'm giving you one week to see every doc you can. If everything is normal you have to drop this for the sake of yourself and your family". Yeah I do talk to myself often.

Monday I saw an ent who saw no problems with the muscles in my throat when he went in with a camera. He said it was a little red from reflux. Yesterday I saw a voice therapist who told me I was not hypernasal and not slurring my words. Tomorrow I'm going back to doctor Mccluskey at UPenn. He is supposed to be among the best on the east coast. He directs the clinic and founded the hospitals electrodiagnostic center in 1988. He's the one who told me I was ok. However, tomorrow I'm having my (crossed fingers) final and most thorough EMG done. I'm talking both sides and bulbar. If I've been tight, achy, twitching, buzzing (and crying) since christmas the emg WILL pick something up RIGHT if it was als. I'm tired of wasting my life worrying. So by this time tomorrow I'll either be flying high or even more desperate...but I'm attempting to put an end to all my doubts.

 

[ristinaL91]

Hi Brian,

Sounds like you are pulling out all the stops here. Every Doctor you saw so far, has told you that all looks good. I am sure that tomorrow will be no exception.

You talk of flying high tomorrow when you get the good report (and you will), now....if you can do that without questioning all of the positive results that tilll be a great thing. You can do it.

You are way too young to be this worried, you ought to be having fun, and working on your music. I will keep you in my thoughts, and look forward to hearing from you on this board tomorrow night with the all clear!!

ristinaL91

 

[LisaQ.]

Hey Bri,
It is way past time to draw a line in the sand here. If you haven't already, make tomorrow the day, and stick with it.

It's funny, because the last specialist I saw was out of H.U.P, and I've never looked back in over two years.

You just have to make up your mind that you've had enough of this. Have you? It can be tough to let go of this worry and fear. What will go in its place? How will you plan to intercept the anxious thoughts when they threaten your peace of mind? What will you occupy your fingers with, if not Googling? (I'm sure EyeoftheWild can think of something clever to say, here. LOL.)

I know these might sound like silly questions, but they are important ones. You really need more than just a resolve to overcome, you also need an alternate plan, and an alternate reality. You need to move out of the disease matrix and into the truth, where all is well. This will take courage, and persistence, confidence in your wellness, and discipline.

bfs DOES cause all of your symptoms, and we've all had the throat symptoms you are describing as well. If you can settle it in your mind once and for all that all of your questions are answered by a goofy little auto-immune condition called "bfs," you can make peace with it.

We're looking forward to your good report, and the new beginning of your amazing life, tomorrow. (But feel free to start today if you are so inclined... )

Blessings,
Sue

 

[niakyScotty]

Bri,

You know after tomorrow's test, when they give you the all clear, that you will have the all clear, for what seems to be your major fear. I think having the test will be good. Don't dread it. Look at it as an opportunity for clarity and reassurance.

Easier said then done, as fear will always rear its head at times, no matter what we experience, and we ALL deal with it to some degree, but what we are learning to do is to manage it...tomorrow will be the day that you put out the big fire, and will then be able to work on the sparks that will arise every once in a while.

But you will KNOW after tomorrow that what you are currently experiencing is not due to some dreaded disease, and that is your big fire that you will extinguish tomorrow. Those guys at UPenn are the best in this area; you will have the tests which pick up the dreaded disease manifestations at least 3 months before you would notice symptoms, and you will begin the journey to acceptGood luck, know we are with you in spirit...think of us when you are getting the tests...and let us know how you make out....John

 

[akohler1]

Good Luck tomorrow and let us know. If you keep up this crazy worrying you will end up like the Real Brain Wilson!!!

 

[Maveric007]

brian,
i don't know you, just checked in to reassure others, but please look at my posts. one year later i am so fine, and had CRAZY anxiety about bulbar sh*t. i had an emg of my toungue as well, and as all is normal. one year later my toungue still twitches, and i honestly just find it mildly irritating. i thought i was going to die, and could not see any light at the end of the tunnel. anti anxiety meds were VERY helpful for me. (funnily enought, i was also a professional actress when i was younger, 38 now, , mostly musical theater anyway., if tests have come back normal, try to relax. know that time will truely heal and make you feel so much reassured that all is well. have faith!
mel