BFS Back with a vengeance

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

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BFS Back with a vengeance

Postby dux on August 6th, 2012, 10:12 pm

I have had BFS since 2005, and now I am experiencing a huge come back in initial symptoms and I am going through the whole process again with the Neuro as I am 'convinced' these are new symptoms, they do feel stronger and more pronounced. It all started again 4 months ago with a harmless eye lid twitch that didn't go away (always there every morning I wake up) and few other medical problems (pain in arm) that lead to stress and anxiety and fueled the rest to come on. I have not been on this forum for a long time and came on just to see what people are experiencing and how they are dealing with it. I have all the symptoms you have read about and more from twitching, buzzing, tingles, numbness, spider feeling... you name it. I was symptom free or didn't notice it for 2 or more years prior to this.

I just re-read what I wrote in 2007 about my experience with BFS and in some of my replies I wrote some of my 'new' symptoms then are some that are happening now which makes me feel a little silly. But after a few years you forget the feeling of terror until it comes back and you don't know what's new or at a benign level.

I am seeing a allergist tomorrow as I also have cochlea hydrops which is a form of menieres disease but with no spinning vertigo. It's more ear pressure that comes and goes. I have itchy eyes when it is most intense so there could be trigger for this and BFS. I also have a Biofeedback session on Wednesday which is a discussion about how the body reacts in a fight or flight situation and how stress affects the body even in healthy people. I am skeptical about this but willing to give it ago. I have a EMG and follow up with my Neuro next Thursday. I will post out comes of each.

My theory is all of this was started after I had the vaccination shots of hep B as I felt very weak at the time and meniers and BFS came on just weeks after this. I know it could be coincidental and when I mentioned this to the Neuro at the time he looked at me very puzzled and said ' very interesting' and had other patients say the same thing. Also just a thought all my blood work is good but I have low vitamin D and have noted symptoms of BFS are worse during winter (now live in Australia) when I stay in doors and don't get much sun light hence a lack of vitamin D. So I have started to take supplements for this and see how it goes.

Has anyone had a similar experience or anything to add on how to manage or attended a biofeedback session?

Kind Regards
dux
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Re: BFS Back with a vengeance

Postby raindog on August 7th, 2012, 5:13 pm

No let up at all for me so in that respect i'm lucky because all this now seems normal nowadays. You need to tell yourself its just a flare up and ride the storm. Stay strong.
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Re: BFS Back with a vengeance

Postby dux on August 9th, 2012, 2:15 am

This is a follow up from current treatment / investigation.

Specific Blood Test: CK, Thyroid, AN, Extractable Nuclear Antigen Antibodies, Cardiolipin IgG AB -- All Negative. These look for any auto immune diseases. Standard full blood count Normal this time. I say this time because I have gilbert syndrome which is a elevated levels in bilirubin which is found in 5% of the general population which is harmless, mine has not been above the normal range in a few years. I have seen other BFS members with this also.

Allergy Testing
. I went to see the leading allergist in Sydney the other day and he did various skin tests and so on. I did this to see if anything is reducing my immune system or causing my body to become weaker where it may lead to BFS symptoms arising. I am very allergic to dust mites,mould, *beep*, grass and to my surprise almonds. I have almonds every day and have done so for many years with out any adverse serious problems. I have had watery eyes and a runny nose very often though. The allergist has put me on a dust mite vaccine. I got rid of all carpet mats in my room, cleaned all dust, and put in a air purifier and will change habit of air ventilation and will stay of the almonds for now.

Biofeedback session This is a session on how to identify when your feeling anxious and stressed and what to do about it. I am pretty sure we all check our self 100's of times a day and always anticipate further twitches and other things and just this feeling of waiting puts our body in a fight or flight situation that cramps our muscles and releases endorphins. Always being in this state makes our body tired and muscles to cramp and hurt so the session talks about how to identify and control when you in that situation which for most of us is all the time.

Next week I see the neuro again and will post results of that out come and what his final thoughts are. We were all good before our BFS started we just need to know how to get back to that time. So I am investigating all avenues. It Would be good if we have 'system restore for our bodies'
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Re: BFS Back with a vengeance

Postby dux on August 17th, 2012, 3:37 am

Final Follow up:

Did an EMG test at the nuros office yesterday. It is not a pleasant experience. One is looking at the faces of the technician and neurologist and not knowing what they are thinking or how they are interpreting the data, second is the needle being put in your muscle and then told to move the muscle as much as you can. This was very uncomfortable and I can still feel slight pain today in the areas the needle was put in.

Thankfully the test was clean and nothing significant was found. The conclusion from the Neuro is that I definitely have some thing benign and nothing that testing can find and that I was 'Of the scale' with stress that made me aware of every thing happening in my body and exacerbated and caused symptoms. I argued that symptoms fueled anxiety and possibly snow balled because symptoms over lap with nasty diseases and if if he really thought that all was just stress why did he bother with all extra blood and EMG testing. (OR wanted $$$) Other than that I never feel stressed at all.

He offered and suggested I see a psychologist to manage the way I think about symptoms and stress. It is six free sessions, so I got nothing to loose so may give it and see if it makes me less worrisome.
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Re: BFS Back with a vengeance

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