Getting a diagnosis

1. Letitiax 21 February 2012 at 16:08PM
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   My journey to diagnosis has been a long one.

   I first complained to my GP of twitching below my right eye and was dismissively told it was stress. I went away and tried to ignore it, hoping it would go away.

   Of course it didn't and a couple of years later I started to get a strange feeling on my cheek - I can only describe it as the feeling you get after anaesthetic injection at the dentist. This time the GP referred me to a neurologist who did an MRI scan. At my next appointment he told me there was nothing to worry about but I could have botox injections to ease the twitching. No one mentioned HFS.

   As I didn't fancy the botox injections I put up with the twitching for another two years until I decided I did need something. Back I went to GP - he didn't seem keen to refer me and said "was nothing else suggested?"

   I had to be referred to a different neurologist at a specialist unit. This appointment was the first time HFS was mentioned "I agree with the previous diagnosis" she said, even though she didnt have access to my MRI. She just gave me the leaflet to read from the dystonia society and that was the end of my consultation.

   So far I have had two botox sessions (each of 3 injections), two along my eyebrow and the third below the eye. The twitching has lessened but not completely ceased at any time. I still get the very strong feelings where I struggle to keep my eye open.

   I have decided to give cranial osteopathy a try after reading lots about it on the internet, though I don't think I have seen any improvement.

   In the past 10 days however I have started to get some minor twitching in my other eye.and wonder if it could be making things worse.

   Was my route to diagnosis typical?

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2. sean thornton 21 February 2012 at 16:22PM

   Hi,

   We have a good thread going on this site re hemifacial spasm for your info.

   I had similar problems 5/6 years ago, it progressed to full HFS on the right side side of my face.

   After 5 years of Botox, it stopped working, as it will do with everyone !! I then had to take the next step, and opt for MVD surgery on the brain.

   I went for the surgery in Nov 11, and it failed !! so I'm left with the same spasms, no Botox, no nothing, just frustration the surgeon didn't fix me.

   I'm going for yet another MRI scan soon, and at some stage will have to go through it all again !! but not sure with what surgeon...

   So, demand you get a proper diagnoses my friend, and if it is HFS, don't mess around with Botox, it eventually becomes useless, and it's a hit or miss when it works, just demand you are wanting the surgery, I have been there, and I don't know why doctors, on knowing a patient has HFS, just doesn't advise the patient to go for surgery,,me thinks it's a budget thing !!

   I hope it is not HFS for your sake, check out our other threads on this site re same, all the best, hope this helps a wee bit.

   Sean.

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