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Posted , 4 users are following.

karen78237
karen78237

Hi folks,,, i started with a twitch in my right eye,,, and now a few months later all my face and even my neck is going into spasms,,, iv been the doctors,,, was sent for blood test,, iv recived a letter from the doctor to make an appointment, which iv done,,, but from that phone call to seeing the doctor , is a month,,, its really getting me down,,,

 

0 likes, 11 replies

11 Replies

  • ed_92085
    ed_92085 karen78237

    Posted

    Hi Karen,

    I don't know how much of what's on this site -or on the facebook ones which are mentioned on this site, that you have read, but there is a massive amount of experience and understanding available to support you with the difficulties that you are experiencing. People who are posting on these sites have an intuitive understanding of how this is "getting you down" as you put it.  I don't know if it is Hemi Facial Spasm ( HFS), but it sounds like it could be as the twitch originated in your eye and has proceeded to your neck. You say a few months. That seems a very quick progression ( I think progression is a misnoma, as regressing is what's actually going on), but I think there is a lot of variation in how long this takes to move down to your neck ( more than 10 years in my case),

    Reading what's on these forums is a reminder that you are not alone! Good luck with your dealings with the doctors. They may not have much ( if any ) experience or knowledge of what is quite a rare condition, so they'll be relying on you to educate them.

    All the very best.

    The more you know, the less afraid you'll get. Don't be scared to find out all you can, and definitely don't bury your head in the sand like I did.

    Ed

     

  • karen78237
    karen78237

    Posted

    Thanks so much for your reply ed, it really means alot ,,,

  • karen78237
    karen78237

    Posted

    i dont no what it is yet,,, but after reading all the stuff on here, i think it is,,,, can they tell from blood tests , does anyone no this ?

    • ed_92085
      ed_92085 karen78237

      Posted

      Hi Karen,

      As far as I know the standard method of diagnosing a hemi facial spasm is an MRI scan which can show up a compression of the nerve-although some folks who are experiencing the spasming on only one side of their face ( and are therefore pretty sure they have HFS as HFS is a condition of one half of the face) have an MRI which doesn't reveal anything. I guess that an MRI may not provide conclusive "proof" of HFS in some cases, but if you are experiencing this twitching and spasming on only one half of your face, some might say it is reasonable to conclude that this is what you have and work on that basis.

      With regard to blood tests, I'm not sure that this is part of a diagnostic process for determining whether you have HFS or not. Knowing medical systems as I do, I'm wondering whether this is a test they give you to rule out something else. There are probably numerous things they may spend a lot of time ruling out, but it might be worth considering whether they could "rule in" HFS at an earlier stage if this is what you feel that you may have. ( that was just a thought, as I know that some of these "eliminator " tests are important and not ways by which the medics skirt around the heart of the matter) smile

      best

      Ed

    • Roseann
      Roseann karen78237

      Posted

      Hi Karen.  As Ed has said, there are many of us on this site who have a good understanding of how you might be feeling and how this twitching business can get you down.  As far as I know, blood tests will not diagnose HFS.  You need to see a neurologist and have an MRI scan and I think it's your right to ask for a referral for this.  I'm not sure if you're in the UK, but, if so, you may well need to educate your GP from what you learn on this site and possible the Facebook International Hemifacial Support Group too.  It's impossible for any of us to say whether or not you have HFS, but you are certainly showing many of the symptoms and your 'progress' has been fast.  When I was in your position I decided to pay for a private appointment with an expert in HFS and also an MRI scan (this cost me around £750 but it was well worth it).  The MRI will rule out any other condition which might be causing the symptoms and is completely painless.  I went to Nik Patel in Bristol, and later had successful surgery with him.

      Wishing you all the best.  Please let us know if we can help in any way.  And, if you can, try to remain positive and be determined to get a diagnosis as soon as possible.  Sometimes it helps to have someone else to speak up for you and to tell the doctors how badly it's affecting you.

    • karen78237
      karen78237 Roseann

      Posted

      Hi Roseann,, yeah im in the uk,,,  thank you for your kind words,,, feeling loads better after reading what you and ed have said,,,, so consider yourselves hugged redface

       

  • Williamsmummy4
    Williamsmummy4 karen78237

    Posted

    Hi karen, I saw your post today and really wanted to reply to say , you're not alone. I have seen my gp for the first time today as I too have similar symptoms to you, although it has not affected my neck at all. I am only 41 but this hfs ( if it is that) has progressed very quickly in my case and I am really getting upset about it as my young children keep commenting on the spasm and it is upsetting them to see it. I hope we can both get help for this quickly as from what I have read it can take years of suffering unless you push for help, like i will. Try to stay positive and keep in touch

    Caroline

    • Roseann
      Roseann Williamsmummy4

      Posted

      Hi Caroline.  Sorry to but into your conversation, but just want to say that you are SO right when you say that you have to push for help.  There are many others of your age who have this condition across the world, but do know how hard it must be when you have young children.  Insist to your GP that you wish to be referred to a neurologist and then insist that you need an MRI scan to confirm the diagnosis and rule out anything else.  I don't know where you live, but there are only a few really experienced doctors for HFS.  I'd encourage you to join the Facebook Hemifacial Spasm International Support Group.  They are a great group of people from all over the world and the Americans really know their stuff about HFS and all the possible treatments.  If your GP tries to fob you off with anti-convulsant medication then I would suggest that you say no until you have had a definite diagnosis and MRI scan.  If you do have HFS then Botox is the only recognised controller of symptoms and surgery the only known cure.  Hope I am not jumping the gun in telling you all of this, but I wish someone had been able to help me through my 9 years of having it.  I would have opted for surgery much sooner!  Take good care and hope you too can stay positive.  All best to you.
    • Williamsmummy4
      Williamsmummy4 Roseann

      Posted

      Many thanks for your comments roseann, I am trying to stay positive and hope that my gp will agree to an mri, if not I may consider going private. 
  • karen78237
    karen78237

    Posted

    Hi Caroline,, thanks for the message,, im really strugling myself,, im 54, live on my own,,, so dont have anyone as such to talk to,,, but this site as been a great help,, xxx

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