Freaking out about BFS symptoms

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Freaking out about BFS symptoms

Postby Guest on January 14th, 2003, 1:32 pm

I am freaking out about my symptoms again. I have been lurking on this board for some time now and have again convinced myself over the last hour that I either have ALS, a serious neurological disorder, or a brain tumor. :shock: I've always been high strung and always seem to look for things to worry about. I convinced myself that I had a brain tumor in July 2001 but it turned out to be allergies. Twitching basically started in 9/2001 when I lost my job in a really awful way and subsequent to 9/11. They were all over my body and were pretty constant for about 3 months. I also started getting a clicking sound in my left ear (palatial myoclonus?) which was sporadic (could sometimes go a week or more without manifesting itself). To make a very long story short, my twitching has subsided but comes and goes in all parts of my body (I may not have a twitch for several hours and then have a bunch) though I also get this clicking sound in my left ear on occasion. I have experienced NO weakness or cramping whatsover in the 16 months since these symptoms manifested themselves. A dr. at the Cleveland Clinic said in a posting that he knows of no tumor that presents with widespread twitches all over the body, and when I called my PCP several months ago, he indicated that all these symptoms are attributable to anxiety/stress. Someone please tell me that I'm freaking out over BFS symptoms and that ALS would have manifested itself by now. Do any of you get clicking sounds in your ears or tinnitus in some other form? Could this all be anxiety? I have been CONSTANTLY worried since the symptoms began.

Postby SusanSid on January 14th, 2003, 2:16 pm

Dear Guest,
Please try and relax. With the length of time you've had the twitching and no weakness, I'd say it sounds classic for BFS. From everything I've read, ALS is progressive, you would of had other symptoms by now if that were the case. If it will make you feel better, make an appt. with your doctor, but chances are, they are going tell you the same thing.

Regarding the eardrum...I get a thumping twitch here and there. Have had it for about a year. It occurs for a day or so and then gone, sometimes for months. That is only one of many other symptoms I get that come and go.

Take it from a worrier, don't have yourself dead and buried by unfounded fears. Anxiety and stress are powerful emotions and they can make almost any symptom go nuts, only "confirming" your concern. I know it's hard to be told it's stress/anxiety etc., but the anxiety only makes an unpleasant condition (BFS) worse. Some need counseling (and it does help with the right therapist), some take medication, many times only temporarily to get over the hump of being so terrified. I urge you to read the posts on this website, stay away from other websites (like ALS, brain tumors etc.). Don't be afraid to post here and ask for clarification and support. Also, you may want to see your doctor to alliviate your concerns. Seek the emotional support that you need to help you through this difficult time.

Almost all of us have been in your shoes and know how powerful the mind is and how fear can totally control every thought and emotion. It will get better, just do the work you need to do to get yourself calmed down.

Hang in there! :wink:
Selfless giver of time
Selfless giver of time
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Joined: August 15th, 2002, 6:01 pm
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Postby twitcher(nli) on January 14th, 2003, 3:48 pm

Ok, the mere fact that you know what palatal myoclonus is shows me that you, much like myself, spend too much time seaarching the med sites. I can speak about the PM, as my step-mom had it when I was 13ish. She said it was like she was swallowing all of the time. We could actually hear the ticking noise it made, so try not to over-analyze the sound. Based on my limited knowledge, you would hear it in both ears. We used to call her Timex, takes a lickin' and keeps on tickin'.
I get twitching in my ear, so it's not beyond imagination that you would get twitches in the ear/throat area. Also, the sound came more from her throat. This was more years ago than I am going to admit and she is still going strong. The myoclonus simply stopped and never returned. (she had it for over a year...non-stop)
I do get clicks in my ears from time to time. I never really paid much attention to them.
I can't wait until I hit 16 months twitching. I'm at about 13-14. I still get worried every now and then, but I went to cognitive-behavioral therapist and that helped tremendously.
Do you start worrying about your twitches and then spend hours checking the 'Net for info or check your body for anything unusual? If so, you may want to see a Pshychologist for an evaluation. At 16 months, you should really not be this worried about the twitching.
I used to be in several bands, so I do have tinnitus. It's *beep* annoying at times. I notice it most when I'm trying to sleep because there is no significant background noise. The sound, pitch and intensity does vary from time to time. Not much fun, but that's the price I am paying for playing at 11 with no hearing protection.
My personal story of health-related worries goes back over 15 years. Here is a chronological list of disease I swore I had:
Breast Cancer - I'm male
Stomach Cancer
Lymphatic Cancer
Colon Cancer
Bone Cancer
Cancer in my jaw
Spinal Tumor
Brain Tumor
Skin Cancer
Back to stomach cancer
Diabetes Insipidus
Kidney Failure

Take it from me, the mind is vastly more powerful than we give it credit for. That list has pretty much ruined a good chunk of my life. I remember being 16 and praying that I would live love enough to go to a concert that was coming up. 15 years later and I'm still kickin'

Postby paranoid on January 14th, 2003, 8:28 pm

twitcher, that is hysterical... I didn't think anyone could be "dying" of as many illnesses as me, but I have to say you give me a run for the money! Replace diabetes with esophageal cancer, add Ovarian cancer and that could be my list!

oops, right now its either pancreatic or liver cancer with my RUQ pain!



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