Newbie - hello my experience

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Newbie - hello my experience

Postby Luelle on September 14th, 2012, 6:48 pm

Hi I was diagnosed 5 weeks ago. Here is a bit of my history and the story of how I got here.

November 2010 I had just started my nurse training and had gone swimming with a Uni friend, when I got out of the pool I felt really drained and thought I was coming down with something, sure enough I started with a rash on my trunk and viral symptoms. I took to my bed when I could and tried to sleep it off .... And sleep ..... And sleep !! After 3-4 weeks of it not really improving went to my GP who said it was viral nothing to do but wait, waited 4 weeks and returned rash gone but fatigue remained although not as severe and now my joints were aching. On and off I went to my GP for about a year having blood tests and mini neuro assessments etc and everything was put down to stress/ work/ home life so I tried to go with it. One thing kept bugging me the tiredness never went and from one day to the next I could ache almost anywhere and no matter how much sleep I got it just wasn't enough I could still sleep through the day. I started having "episodes" like losing my balance ( which I now know was a problem with the muscles in my ear because of CFS ), I had 7 weeks where I was unable to produce tears, my vision went bad in one eye, parasthesia, then other episodes of poor proprioception .... I was getting scared I wasn't doing as well at the mini neuro assessments I was falling over.

I wAs sent to a neurologist, orthoptist and a rheumatologist as my GP started getting scared and he is FABULOUS ;0). Rheumatologist because I have an extensive history in my family, orthoptist for the eye trouble to rule out disease or defect and neurologist because there was evidence of neuro impairment. Rheimatologist ruled me out of her schedule straight away and said I was wasting her time, orthoptist still had me on their books because there are some abnormalities in my field of vision that they want to keep an eye on and they want to see if the dry eye reoccurs.

Well the neurologist is well FANTASTIC he is really nice and friendly and very thorough ;0) I met him between Christmas and new year as I was given an urgent appointment, I had my first MRI in January where they found a mass in the centre of my brain then a contrast MRI in March which confirmed it to be a Pineal cyst which no ones worried about because it's probably always been there much to my relief !! So I went and had another chat with him and he suggested an EMG and nerve conduction study which revealed peripheral nerve hyperexcitability straight away and study of the data produced confirmed Cramp Fasciculation Syndrome. I am to start carbamazipine soon but don't have a dosage sorted yet and as its so rare and not in the BNF nor the ICD-10 I am awaiting confirmation from my consultant as to the dose. I'm hoping it will do what it says on the tin and stop the VGC from opening without cause therefore reducing the twitch and cramp and letting me rest properly.

That's enough for now I think but nice to meet you all xxx
Luelle
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Newbie - hello my experience

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