Help!!!!!!! Fibro PC3: Hi there, has... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,983 members67,147 posts

Help!!!!!!! Fibro PC3

Ladymarmalade profile image
9 Replies

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.

Written by
Ladymarmalade profile image
Ladymarmalade
To view profiles and participate in discussions please or .
9 Replies
TheAuthor profile image
TheAuthor

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

DeeNJai profile image
DeeNJai

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.

Ladymarmalade profile image
Ladymarmalade in reply to

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!

Jjudith profile image
Jjudith

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

Ladymarmalade profile image
Ladymarmalade in reply toJjudith

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

Jjudith profile image
Jjudith in reply toLadymarmalade

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

Glenys profile image
Glenys

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.

Glenys profile image
Glenys

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

Not what you're looking for?

You may also like...

Fibro Help

Hello Everyone, I am new to this forum and I'm looking for some advice. I've not been diagnosed...
dozzadoll10 profile image

Fibro help and information please

Hey all you amazing people, my neurologist diagnosed me with Fibromyalgia, I was attending him for...
Jillian76 profile image

Fibro help

Hi I got diagnosed back in May and luckily the doctors found it very quickly. I tried all sorts...
Lucytick profile image

Does Gabapentin help fibro symptoms?

Hi and Good Morning to all, I've been to my doctor this morning and told him about my pain...

Just been diagnosed with Fibro. Please can anyone help???

After 25 years of suffering with extreme pain, muscle pain, depression, undiagnosed rashes, etc,...

Moderation team

See all
Hazel_Angelstar profile image
Hazel_AngelstarAdministrator
Lynda_FMA_UK profile image
Lynda_FMA_UKModerator
Sarah_fmauk profile image
Sarah_fmaukModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.