Waiting for a diagnosis

I have osteoarthritis in lower lumbar spine and neck and spinal stenosis, I have had extreme stiffness in my body, I have had this about 2 years.I can't twist my torso to wipe my b.. sorry to be explicit. Due to this I have had pain in my right rib area for over 6 weeks, as I can't really rest it. My doctor is referring me to rheumatology, but 18 week possible wait. In pain daily. I had a 3 month pain in my pelvic crest last year too and often get pain there. I think I have PMR, but my esr and crp were normal. I am thinking of paying privately now, does anyone have any ideas. I am desperate now.

[PMRpro Ambassador]

"I think I have PMR, but my esr and crp were normal"

That is immaterial - up to 20% of patients do not have raised blood markers.

I have to say - I and a lot of others had the "my arms are not long enough" experience!

Where are you? Maybe we can recommend a good private rheumy - it is bad enough having a poor NHS rheumy but if you chance on one of them AND have to pay it is decidely not a good thing, as someone on the forum has found recently.

[Hidden]

Thanks for that. I live near Ashford, Kent. I have found a Dr Bari, who works NHS and private. He does specialise in PMR and other disorders. I just can't wait any longer. Painkillers only mask it, until I don't take them. Thanks anyway.

[PMRpro Ambassador in reply to Hidden]

Is a day trip to Chertsey too far? Our general experiences with rheumies and PMR in Kent has been very poor (to put it kindly). If you are spending money on a private consultation then a trip to Dr Rod Hughes will repay your travel costs over and over.

[Hidden in reply to PMRpro]

Thanks. Only problem, I can only afford initial consultation, then I would have to revert to nhs. So, I don't know how that would work with a Hospital in another County. Just want to see someone with lots of experience and not just get mis diagnosed with say Fibromyalga, when its not.

[PMRpro Ambassador in reply to Hidden]

You can choose which hospital you are referred to - anywhere in England. It is your legal right. It doesn't apply in Scotland or Wales.

You could ask your GP to refer you to Dr Hughes at St Peter's and wait, someone did get a very quick appointment just before xmas, to be seen in January. Dr H does usually transfer people to his NHS list I think once he has seen them if he thinks it is needed. But if it is PMR you can usually be managed by your GP once you have the diagnosis.

drrahughesrheumatologyltd.com/

He is not just very experienced - he is a very empathetic person.

[Arleneh in reply to Hidden]

Hi denhen I paid 200 pounds to see rheumatologist privately as there was about a year’s wait to go through NHS ( I live in NI). However once she made diagnosis, prescribed pred and outlined dosage and a tapering schedule I was back in the care of my GP and have not seen rheumatologist since. I have to say the rheumatologist told me pmr would last about a year which shows how little she knew! Three years and counting 😩

[Rokerman in reply to Hidden]

Hi DenHen - can only speak from personal experience - can empathise with your need for an urgent diagnosis! After a few days of unexplained agony, I was persuaded by my wife to ‘go private’ and so I visited Mr Jawed at the New Victoria Hospital nr Kingston, Surrey. Instant diagnosis, then reverted to GP

Good Luck

[Hidden in reply to PMRpro]

Thanks. I have sent an email to request cost and if I can return to NHS after. Ironically, I lived in Surrey most of my life. Only moved to Kent in last 5 years. My stiffness in my body is really extreme and worrying as I will be 60 in two weeks. Its ridiculous!!! Thanks again.

[PMRpro Ambassador in reply to Hidden]

Tell me about it - I was still 51 when mine started! And had 5 years undiagnosed.

[Hidden in reply to PMRpro]

That's terrible. Did you see Dr Hughes?

[PMRpro Ambassador in reply to Hidden]

No - I lived in the north of England and didn't know about him anyway. I worked out for myself what it was and then was referred locally - to a rheumy who didn't agree but DID give me 6 weeks of pred. Which worked a miracle in under 6 hours and a GP agreed with me. The rest is history. But I had enough bad experiences myself and have seen enough similar things in over 8 years of the forums to be keen to save anyone who can manage even one private appointment from the same. I really don't know why Kent is so awful though!

[Hidden in reply to PMRpro]

thanks. I was not properly diagnosed for about 30 years for another issue. Its a lottery of who you get. I will see what the cost is for Dr Hughes, so far they are all about 200 - 250. I will have to use my next pip payment for it. I'm having to go to tribunal for pip too, as they have reduced my points. Its all a nightmare. just would like to be pain free and not stiff! have to sign off now. thanks very much.

[PMRpro Ambassador in reply to Hidden]

Contact his NHS secretary and explain the situation and ask how long an NHS referral might take. You have nothing to lose.

[Zebedee44]

I feel for you Denhen and I truly sympathise with your PIP dilemma.

I live in Wales and was never referred to a rheumatologist but if I lived near a recommended specialist I would beg borrow and steal (not really) the money to see one

I was also just turning 60 when my PMR was diagnosed and thought I was going to be in a wheel chair, so I hope you get the right help very soon.

Sending big hugs

Chrissie

[Hidden in reply to Zebedee44]

Thank you Chrissie

Its good to get support and know that you're not the only person in the situation. Only just found this site, so very grateful. Thanks for hugs and returns to you.

Take care. Denise

[Zebedee44]

I came across this forum by chance and I'm so glad I did, it is very supportive and informative. The "aunties" have so much knowledge and experience and everyone understands where you ar coming from. I'm sure you will get more comments and recommendations about Rod Hughes, and you should get a copy of Kate Gilberts book about PMR, it's very readable and she is very much one of us,

Chrissie

[Hidden in reply to Zebedee44]

Thanks again for all your useful help and support. Dx

[Katrinaroper]

Ask for a trial of prednisone?

[Jackoh]

Hi just to say that I had a private consultation with Dr Rod Hughes. I did pay for another one about 9 months later as things were not going to plan. Although during this time I was in email contact with him. I then asked to be transferred to his NHS list. Rod Hughes as you know is in Surrey( again where I used to live!) but now I now live in the West Midlands ( 2/3 hours drive away) The transfer to his NHS list was seamless and very quick. I am also pleased to say that I am not treated any differently being a NHS patient as opposed to being a private patient. As has been said he not only has experience of PMRGCA but is very empathetic: he listens, is not in anyway ruled by "bloods" or dose of steroids but I have found gives you the confidence to believe in yourself and your ability to flow with these conditions. I think his perceived laid back approach ( under that, I feel he's very on the ball) whilst gently steering you, is a winner, which other Consultant Rheumys could well emulate. Best wishes to you. Let us know how you get on.

[Hidden in reply to Jackoh]

I have booked to see Dr Richard Campbell at BMI Chesfield in Orpington. He was mentioned on this site as attending a meeting in 2015. I checked him out, he seems to be very experienced in PMR and other Rheumy associated stuff. He's written lots of research papers and I can see him on Tues 30 Jan. Ironically, my GP pushed my referral forward through chose and book, but chose local hospital at Ashford, at the private wing, but on NHS for 14 Feb. But, I do not know who I am seeing and prefer to choose myself. Dr Campbell has NHS practice too, so I am hoping I may be able to swap to his list, after initial private consult. I do hope I get the help I need.

Thanks to all who have replied to my posts.

Kind regards Denise