Very scared...plz give your thoughts

Information about how to manage or reduce the severity of BFS symptoms

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Postby uber on April 19th, 2003, 12:16 pm

1 thing I didnt think of and have looked into symptoms of is ME (Myalgic Encephalopathy) could this be a possibility??
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Probably BFCS

Postby Nova on April 25th, 2003, 1:34 am

Uber,
Sorry you are dealing with all these symptoms. It does not sound, to me, like you have MS (my mother and her brother, my uncle, both have MS). I just went to the neurologist and was diagnosed with BFS, and he told me that twitching is not indicative of MS. If you are concerned about MS or ALS (which you should not be concerned about, according to the way your symptoms have presented), you should see a neurologist who is willing to do an EMG (nerve conduction) test (to rule out ALS and other disorders) and a brain & spinal MRI (to check for the white plaques that are often seen in those with MS). If you have ME (or Chronic Fatigue syndrome), then you would likely be experiencing tiredness that interferes with your functioning on an extreme level. Depression, however, can cause severe fatigue. If you are anxious and depressed, you should definitely attend to these conditions as they are often biochemical in nature. Your genetics may predispose you to depression and anxiety, and there is nothing to fear from seeing a psychiatrist to obtain a diagnosis and treatment for your symptoms. It is imporant to get the proper diagnosis so that you can be given the proper form of treatment. (I'm speaking from experience here, as I have family memebers with bipolar, and I'm also bipolar. For years the docs thought I was depressed, and gave me anti-depressants, which were actually making the bipolar disorder worse.) You'll find that once you get your emotional health in line, you will be better able to deal with the physical ills you are experiencing. Also, reducing anxiety can reduce your symptoms. You, likely, have Benign Fasiculation and Cramp Syndrome. This just means that your nervous system is revved-up and the nerves are hyper-reactive. Rest, calmness, a good diet, lack of caffeine, etc., may help. Also, if your symptoms are bad today, they may be better tomorrow or gone by next week. See a good neurologist who is willing to do the testing that will put your mind at ease. Be good to yourself. Best of luck to you. Remember that doing research can lead you to answers, but it can also lead you astray. Don't do it if it increases your anxiety. It's okay to take a break. Set up some appointments with good doctors and go from there. Keep us posted!
Take Care,
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Postby Jenn311 on April 25th, 2003, 8:54 am

Wow NOva...

That was a great post! :D Hope you are feeling better Uber!
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Postby uber on April 25th, 2003, 7:32 pm

since i posted over this last week ive seen a real difference in my twitches, they seem to have settled down lots, still having some odd sensory problems in my right foot, like a feeling of pressure on the top of the foot. Now the twitches dont seem to be as constant, they seem to be like a "tiwtch here...twitch there" and sometimes they feel different, like electric shock sensation or a big thump sensation.

What is really driving me mad right now is on a night time my ears are ringing, and its stopping me from sleeping, I only really notice it on a night when my room is quiet....but its keeping me awake...Ive had tinnitus in the past and that "feels" like its your ears ringing...the best way I can describe this is it feels like inside my head is ringing...a constant high pitch...what is this an indication of??

Other problems im getting, white hairs!!! well not lots of them, but they are showing on the side of my head..the occasional white hair here and there...im only 23!! why is this happening?? also if I spend a day walking around when I get back home im feeling totally worn out...not tired enough to sleep just feel like I need to sit down etc.

thx for your words Nova, im really confidantly starting to believe I dont have MS or ALS...although ALS still worries me a little...im certaintly not having any muscle weakness at all....but like I said still a little worried
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Postby kim on April 25th, 2003, 9:12 pm

Hey Uber!

I got white hair at 23 too! (Nothing a good bottle of Clairol won't cure!) My guess is that you are becoming hypersensative to your body at this point because of all your worrying. I think you may be reading too much into many of these very common things. I know your stress levels are high, but the more you relax, the better off you will be. You will be seeing your Dr. soon, and he/she will put your fears to rest. In the meantime, stay off the internet and stop self-diagnosing. You will always be able to find some horrible thing to match whatever symptoms you have. (Been there, done that!) You are 23! Live life and try not to worry too much. Pretty soon you'll be 40 like me, and wish you felt as good as you did at 23!

Wishing you peace!

Kim
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Postby fastpage on April 26th, 2003, 12:36 pm

Right Kim. Or 53 like me!
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Postby uber on April 28th, 2003, 1:34 pm

you know something I have always wondered and never knew about....many many years ago..at least 4-5 yrs, I used to notice in my room on a night time when the lights were out, that when i closed my right eye things in the room appeared to darker, so i wondered if my left eye was damaged. Now over the years ive had eye strain lots of times and always put it down to the silly ammount of time spent at the computer...it was never serious eye strain, I could handle bright lights, but lots of times I just wanted to close my eyes and sometimes id get headaches. Also over the years ive noticed this problem in my eyes come and go, and since my (apparent) BFS started, ive seen this problem comes back, its not just in dark rooms, its outside too, when I look at things just out my left eye, everything seems a little darker, and on my right a bit lighter and more vibrant. Should I be worried about this also??? my twitched have calmed down a lot over the last 1-2 weeks, but as im writing this im gettting aches in my left leg...dunno why =\ I was just out for a walk, sometimes i get aches sometimes i dont.
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Postby tlotoxl on April 28th, 2003, 2:02 pm

i don't know about brighter and darker, but my eyes are uneven -- one eye sees things in warm, redish, colours and the other in cold, bluish, colours. it has always been that way. is that at all similar to your situation?
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Postby Jenn311 on April 28th, 2003, 2:38 pm

Hey Uber...

Concerning the discrepency in the eyes...that is a normal phenomenon. The eyes are often exposed to different amounts of light, and there is an adjustment period where your eyes switch from using cones to see in light to using rods to see in the dark (different receptors...) the total amt. of time for the transition is about 20 minutes. You can even do a cool trick to make your eyes do just what you are saying! Cover one eye for about 10 minutes...don't give it any light. Then uncover it and it will see differently than your other eye! That is why it sometimes takes our eyes a little time to get used to the light or dark...the switching of the receptors isn't instantaneous. But when you think about it, as we evolved as a species, it wasn't necessary as we didn't have artificial light.

Hope this helps. ~Jen
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Postby uber on April 28th, 2003, 3:20 pm

lol thanks again jen....you must be getting sick of me :)
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Postby Jenn311 on April 28th, 2003, 4:21 pm

Not at all :wink:
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Postby uber on April 28th, 2003, 5:24 pm

tlotoxl I didnt even see your reply...yes thats EXACTLY what it seems to be like...is this just normal?? sometimes I notice it and other times I dont.
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Postby izzie on April 29th, 2003, 3:36 am

Hi Uber,
I have just read about problems and it sounds like you are going through a very difficult patch. Many of us can identify with what you are experiencing. Your symptoms do not fit with the presentation of MS. Your lack of weakness and wasting makes ALS as unlikely for you as it is for the rest of us. Try not to worry and try not to let your thoughts run away with themselves. I see a cognitive behavioural therapist to help me deal with how I respond to my symptoms and it is def. helping me. Your weight loss is likely to be due to anxiety. Are you sleeping okay?
I hope you find some peace of mind
best wishes
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Postby uber on May 2nd, 2003, 6:05 pm

urgh...jen please help...noticed over the past few days that im starting to shake lots...all started I was out shopping the other day and I looked down at my left hand holding the bag and it was slightly shaking...and now I can make it shake whenever I need to...like If i hold my left hand out in front of me with my arm straight, nothing happens...but if i put something in my hand and do the same thing...my arm starts to shake, Also when I lay on my back with my feet out in front of me...i dont shake, but if i bring my knees up then my legs start to twitch and shake quite badly....what does this mean??? is it parkinsons??
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Postby Jenn311 on May 2nd, 2003, 8:17 pm

Hey Uber...

Fear not! A lot of us here in this forum experience that as well. I shake a lot on my left side (hand, arm and leg) if I have been using them to do anything weight-bearing at all. Curiously enough it's only on that side though. And it goes away if I rest those muscles. It is a normal part of BFS. In Parkinson's disease, the muscle only tremble when at rest, and it goes away if you use the muscle. So in a way, it's the opposite effect of what you are experiencing. I posted one article I found about anxiety and besides twitching, it lists trembling as a symptom as well. You are fine! BFS stinks though, doesn't it? Always finding some way of annoying us. But it only gets better if you stop worrying about it and find someway to convince yourself that you are going to be OK. Hang in there!
~Jen :wink:
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