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Do we really have BFS?? or is it something else?

PostPosted: August 7th, 2003, 5:48 am
by uber
Was just thinking last night about my problems/symptoms over the last few 5-6 month, and its mainly been revolved around twitching which was mainly in my legs and feet, toes etc, but mainly widespread twitching, which comes and goes...trying to find the source of this problem. It makes me wonder what the majority of us on these forums are suffering from.

Now when I think of BFS, you think of a twitching syndrome, but its quiet obvious that by talking to the people on these forums, that twitching is not the only thing we get, we also get the sensory problems too, the bugs crawling on skin, the burning skin feeling, pain, muscle aches, fatigue. Do all of these really tie in with BFS?? are they part of the syndrome?? Im not 100% certain they are.

Its obvious if we take the "self diagnosis" route then the internet will point us to possibilities of MS, ALS, Fibromyalgia etc. The thing is along with all of the people on these forums, none of us have never really suffered any "real" symptoms of MS, ALS etc...none of us have never had any REAL muscle weakness, or numbness or optic neuritis or problems that last for days, it seems like everybody on these forums has the same thing as I do..which is problems that will last a day or two or a few hours, even thw twitching I have comes and goes at times. Now ive seen 2 GP's 2 opticians & 2 Neurologists and have had countless rexflex, coordination, vision tests and also an MRI scan of the brain and spine and have been told by EVERY doctor ive seen that im suffering from Anxiety symptoms. What also makes me think is that if you read a lot of peoples stories on here, there "bfs" seemed to start the same way as my problems started which was after a cold or a flu. I dont know if thats purely coincidence or not :\ I mean I look back i remember I had a headcold, and after the headcold was having pain around my left eye, and felt like I had an elastic band around my left index finger at times....and by total chance I was reading a magazine my girlfriend had about somebody who had MS and it started with eye pain, I read into it too much and due to my nature became obsessed then started reading the horror stories on the net...When I look back now it makes me wonder if id read about MS 5 yrs ago, would I have reacted this way??

This is getting a bit long winded I know, but when I have body jerks are they Myoclonus or Anxiety? I dont know...the net tells me they are Myoclonus and a symptom of a brain GP's, Neuro's and MRI scans tell me they are Anxiety..who do we believe??? My neurologist told me that you wouldnt believe the ammount of people going to specialists about problems because of the ineternet and self diagnosis...people putting 1+1 together and coming up with 3 and this is where I come to my point...are we all those kinds of people?? our symptoms all seem to have so much in common that we simply must be all tied into something somewhere..but what is it?? BFS? Anxiety? MS? ALS? Right now im trying to deep down believe what the doctors are telling me and hope that its Anxiety, but I tell you 1 thing...when I put my set of problems into the net, Anxiety is certaintly not what comes back..although Anxiety can certaintly cause all of them..all I get is sites telling me Ihave possible MS or whatever. This also brings me to my 2nd point...are all of my problems symptoms?? or is it becuase im so Anxious about them, that I now pay more attention to them? when in the past I would of ignored them.

If that was all confusing then ill try and sum it up with this: surely you have all asked yourself these questions, where you doubt yourself, and you question was is real and what is not, what is a symptom and what is not, who is right and who is wrong. My whole life ive never gotten ill and when Ive gotten ill for the 1st time or should we say "percieveably ill" you know the 2 things ive learned??

1. Dont get me ill...cause im very bad at dealing with illness
2. Ignorance is so bliss, I wish id never read that magazine that day about MS

PostPosted: August 7th, 2003, 5:58 am
by dwl

If you go back and read the Mayo Clinic paper it confirms that these sensory symptoms are very common in bfs.

Sometimes by thinking about these things too hard they can suddenly feel a lot worse. It's not the kind of thing that lends itself to rationalising, so if you keep trying to rationalise your way through it you will just end up going in circles. I've just recently accepted it for what it is and this has helped.


PostPosted: August 7th, 2003, 7:09 am
by PamT
I hav to say I agree with you. I don't think that there is a standard for any problems or diseases - we all are affected by them differently.

I have a friend who was dropping things all the time and stumbling, tripping, sometimes falling. It turned out that her nerve in her spinal cord was trapped between 2 vertebraes and it was only a matter of time that it could sever and she would be paralyzed.

She had that operated on but the dropping, tripping continued. She became very dizzy and even passed out once. She had an MRI done and then a spinal tap. Turns out it was all still related to the nerve problem.
But if she would have looked up dizzy, numbness, fainting, she probably would have come up with several diseases to fit.

Surely there are other things that cause twitching. Maybe it's a symptom of something else, but not one of the symptoms that affect everyone, so it doesn't immediately pop up when doing an internet search.

PostPosted: August 8th, 2003, 2:20 am
by twitchaholic
I can relate. They tell me at church God doesn't give you anything you cannot handle. I do believe that. Well, I'll tell you one thing. I can't handle anything and hope I don't improve so much that I can handle anything because I would surely be crushed. You hear stories of horror and misery from the "strong" people, the people who are wonderful examples to us all of courage and perseverence. Ususually really bad stuff happens to the really good people. I remember hearing a story that was supposed to be inspiring and encouraging about this wonderful minister and his loving wife. Well they had 6 amazing kids all under the age of 13 I think. Anyhow, some freak incident with the family van caught the vehicle on fire and killed all the children who were strapped into their little car seats. Now mind you, I heard the minister and his wife speak and it blew me away. They had amazing faith, strength and every other good thing I can think of. They were happy. No kidding. They noted that God doesn't give you what you cannot handle and all I could think was "I hope I can never handle anything." Well who wants that? Not I. Stories like that don't really inspire me to become a stronger or better person. They scare me to death. Not that I am not trying to improve, but it's really scary. I guarantee I wouldn't be on radio shows talking about the bright side. Some inspiration I'd be, huh? You wouldn't be able to understand a word I might say through the snorts and dripping snot produced by never ending crying. I'm guessing God knows that about me which is why I have skated so far and been the most fortunate and undeserving recipient of MERCY.
Ignorance was bliss. Then I entered "twitch" at Google.
Thank God I ended up here after praying I wasn't one of the "strong" people. I think it is appealing to remain a weenie. Am I just a big baby or does anyone else ever think like this? You won't hurt my feelings if you just respond with two words: "big baby"
I've improved just enough to handle that without losing it completely...


PostPosted: August 8th, 2003, 7:09 am
In life there are test some we will complete without effort, some will take much strength, and some we will not survive, but we will be remembered for how we handle the situation or test. I want to be remembered as a strong woman, and I lost that strength in the last few months, but slowly I will gain it back. We must see our self making it through this, I believe another poster said this, if we invision ourselves heathly we will be stronger.


PostPosted: August 8th, 2003, 7:35 am
by Jenn311
Great posts both Kerri and Lisa! Lisa, I feel your pain...what a sad story about the minister and his wife. You know they are both on Prozac! I would have to be institutionalized if anything happend to one of my kids. Here's knocking on wood!
Jen :)

PostPosted: August 8th, 2003, 4:59 pm
by Nole
This has made me stronger, twitching is a pain but there is soooooo much worse. It has made me see how wonderful life is, and has taught me to live it to the best of my ability. I no longer worry, or obssess, I live my life, I am happy, and I am healthy....and I barely twitch now, coincidence??, I dont think so, I have my bad days, but much more good as long as I keep my mind with happy thoughts!

PostPosted: August 8th, 2003, 9:54 pm
by twitchaholic
Really you are all correct. It just depends on where you are at the moment. I hope I wasn't a downer with my little excerpt. I just wanted Uber to know I could relate.
I guess when I figured out the twitching was not life threatening it really made me admire those folks that handle trajedy well. I am not one of them and I don't want to be that example. Thankfully, I am not so far and neither are most of the rest of you. Hooray!
Kerri and Nole, great posts.