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Help plea

Posted , 7 users are following.

Williamsmummy4
Williamsmummy4

Hi, I am new to this site and am 41 and live in the uk. I started with a strange sensation in my right eye a number of months ago which eventually turned into an eye twitch,  which I ignored, hoping it would go away. Unfortunately it didn't and it progressed to my cheek which now spasms on a regular basis and affects the corner of my mouth. I have been getting more and more spasms the last 4 weeks and people, including my family, have started to comment about it which is making it worse. I seem to spend my time covering my face when  I am with other people. I finally plucked up the courage to see a GP today and I took video evidence of it happening just in case I didn't have an episode whilst there ( I had some eye twitching whilst there but no more so I'm glad I took it)  the GP said he was unsure so wanted a blood test to be done first and I am to return in 2 weeks but he is leaning towards focal epilepsy. I have had a look at the symptoms of this at home and strongly disagree, hfs seems to be more likely, has anyone else had problems with diagnosis?

please help!

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  • Roseann
    Roseann Williamsmummy4

    Posted

    Hi again Caroline, everything you describe here sounds like typical HFS to me.  Doctors in the UK are generally totally ignorant about HFS and not one doctor in my current Practice had ever heard of it before I told them about my diagnosis.  I have never heard of anyone with HFS having blood tests either, but maybe the GP knows best.......   I messed around for years with neurologists who treated me as if I was putting it on or as if I just had a small cosmetic problem.  In the end I asked for a private referral to a consultant in Bristol and I paid around £750 for a consultation and MRI scan.  The consultant (who was known as the expert in HFS in this country) immediately confirmed my diagnosis of HFS and explained everything to me.  I could not afford to pay privately for the surgery (about £17000) so I was transferred over to the NHS where I eventually had surgery last year (9 years into my HFS journey).  I was 'atypical' with my HFS because it came and went for many years.  I had some longish remissions which I loved, but it always came back, and usually stronger than it went away.  In the end the spasms were day and night and I had become a virtual recluse.  It became a 'no brainer' (excuse the pun) to have surgery and try to get my life back on track.  I was blessed in having a great surgeon who kept me very safe and gave me my life back.  I've been spasm free since 6 weeks after surgery and suffered no ill effects at all from the operation.

    Anyway, sorry to repeat what you may have seen me write elsewhere.  Just wanted to let you know that if you do have HFS, there is a whole HFS 'family' around the world who will hold your hand and support you all the way.  It is an emotionally draining condition but some people just choose to live with it.

    Very best wishes to you and hope you get some answers soon.

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