Help!!!!!!! Fibro PC3

Hi there, has anyone had success getting an NHS referral to check for PC3? I am not claustrophobic and have had many regular MRIs done. I was diagnosed with fibromyalgia years ago and have never been happy with the diagnosis. I can't look up without pain and I'm convinced that it is compression which is causing my CNS work up and widespread pain. I'm feeling pretty desperate.

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  • Hi Ladymarmalade

    I sincerely hope that you are feeling as well as you possibly can be today? I have pasted you a previous link from FibroAction about PC3 MRI and it would appear that the chances are of this are not good I am so sorry to say.

    healthunlocked.com/fibroact...

    I want to wish you all the best of luck with this, and please let us all know if you do succeed in this?

    All my hopes and dreams for you

    Ken

  • Currently there is NO hospital in the UK that do the special MRI to check if you have PC3, in the US there is more research being done as one study showed that 71% and the second one showed that 56% of people fibro have positional cerval cord compression and also that some people symptoms disappear or improve. Dr. Andrew Holmon has done a lot of research in this area. Here is the website address: pacificrheumatology.com/res...

    Dee

  • There are two actually DeeNJai.... See my previous posts.

  • Yes Peachy it was your post that I saw! Thanks. Do you know of anyone who has managed to get a referral for this through the NHS? I've taken all the information to both the consultants I see who have agreed to look at it. It's a start!

  • I couldn't get checks for PC3 in either private or NHS hospitals in UK, but when I went to Dubai I checked myself into the best MRI scan place in Dubai, paid for the test myself - and I have it. I guess you have heard one of Andrew Holman's talks, he is brilliant isn't he. Just keep pressing on with the info from Seattle and hope that they don't keep fobbing you off. I have seen neurologists, rheumatologists and others in UK but when I talk to them about PC3 I get the usual rolling eyes and I can hear them think 'nutter'. Even when I bought the results back, neurologists and GP just look and say the pathology it reveals shows 'normal' changes of ageing. Although I can read the report myself and see that the gaps narrow significantly with neck extension and the report from the technician in Dubai says there is narrowing of the canal and compression of the cord and nerves. So hope you have better luck than I have love and hugs x

  • I got laughed out of the room with one consultant but two others are at least reading the research I passed on to them. I'll let you know if I have any luck x

  • Keep going girl!!!!!!!! Doctors don't always like patients knowing more than they do about the latest research. xxx

  • I tried and couldn't get past the GP - she told me, there was nothing whatsoever neuro going on with me.... That makes me wonder if I actually have fibro.

  • Or if she thought it should be psychological instead.....

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