Prof J Davies - anyone been treated by him?

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Prof J Davies - anyone been treated by him?

Postby Tilli » Thu Nov 25, 2010 5:35 pm

I came across the Name of Prof John Davies specializing in FM working at various clinics one of which is near to me. Before I pay out for a private (expensive) consultation has anyone had treatment form him? Medications from my GP don't seem to be working for me so I'm hoping to bypass what seems to be a long, drawn out process and go direct to the head of the well. Any advice/tips/suggestions welcome. TIA.
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Re: Prof J Davies - anyone been treated by him?

Postby floss112 » Thu Nov 25, 2010 8:02 pm

HI
My daughter has seen Prof Davies several times. The first thing we found was that it was a huge relief to see someone who completely understood all the different symptoms that she had and who was candid enough to say "this is a very severe flare-up".... I find lots of medics reluctant to say this, maybe because they don't want to 'upset' us, but she was really pleased to have her dreadful, constant and body-wide pain recognised.

Prof Davies immediately put her on the Lyrica/Zopiclone combination which has apparently had good results in the States, and when this didn't bring about any improvement he immediately upped the dose to something near the maximum. When she still didn't get any relief, he said that he felt that there were other issues underlying the fibro and referred us to Prof Mathias for autonomic tests - but sent her on her way with Tramadol (morphine derivative) for the pain.

He has been proved absolutely right about the autonomic issues and she has also now been diagnosed with EDS III, so although he hasn't yet been successful in bringing things into remission we are happy with what he has said and done so far and intend to go back to see if he has any other pain-relieving tricks up his sleeve.

I have to admit that I winced when I got the bill - much higher than other consultants that we have seen, but I hadn't heard of anyone else at the time who had the same experience with fibro and I'm not sorry that we went - without him I reckon we would still be completely in the dark! But we are also fortunate enough to have some access to private healthcare so had help with the bill!

So, while I can't say "whoopee, he cured her!", we are going back - so that has to be a bit of an endorsement! Sorry I couldn't be more helpful - maybe in a few months?

Hope you find a way to feeling better soon :hugs:
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Re: Prof J Davies - anyone been treated by him?

Postby Tilli » Fri Nov 26, 2010 6:22 am

Ewww, still not definitive then. Many, many thanks for your reply, it does help. Maybe I'll be better working slowly with my local doc and being more patient - ha, ha - waiting for the next appointment and drug round. Our surgery has an average, four week appointment system for non urgent cases. Add on another week or two to try out (yet) another tablet and it's a slow.......haul.
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Re: Prof J Davies - anyone been treated by him?

Postby loubie » Fri Nov 26, 2010 7:46 am

hi :wave:
i think if you have a understanding GP and one that will keep trying other meds
until you find one that suits you, may be better off staying with that GP.

i think you can see proff davis on the NHS but probably very long wait.

at the end of the day there is no cure, only finding a good way to control it
so if your doc is trying to do just that, whats the point of spending loads
on a doc that really is only doing what a good GP should be doing.

hope i am making sense bit :crazy: this morning

floss hope your daughter is doing better now :hugs: :hugs: :blowkiss:
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Re: Prof J Davies - anyone been treated by him?

Postby Tilli » Fri Nov 26, 2010 1:54 pm

Having found out that there's no local NHS referral available to the good professor and not being able to afford the London trip, I'll be staying with the GP. The frustration factor is huge though. Abreactions to the first two prescribed drugs - can you spell serotonin syndrome? - have been frankly terrifying to experience and because of migraine intensity headaches I'm now left with only Paracetomol and Aspirin until I can get to see the doc.......again. I'm not stupid enough to expect a cure, I'm merely hoping for something/someone to help reduce the pain and had hoped such a seeming top level medico would have a better answer than "lets try this other one and see if it helps". She's a lovely lady (my GP) but things are moving just so slowly. I'm desperately battling to keep in employment, but have had to use most of my available annual leave to cover my abscences so far.
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Re: Prof J Davies - anyone been treated by him?

Postby loubie » Fri Nov 26, 2010 3:40 pm

hi tilly :wave:
we all understand how frustrating it is
to have to keep waiting for some thing that
we can be comfortable on, just glad you have
an understanding gp, as many of us don't and
believe me it is so much harder.

i do now have 2 good gp's i can see
but i went to lots that just didn't wont
to know and were very rude
even though i was dx with fibro
they made me feel it was all in my head.

hope you find some thing to help soon :hugs: :blowkiss:
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Re: Prof J Davies - anyone been treated by him?

Postby fabme » Sat Nov 27, 2010 5:24 pm

Hi

Have you been to a local pain management clinic where they see lots of people with fibro. They also run pain management courses as well which help you to find different ways to manage and not to rely on meds alone

Fab
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Re: Prof J Davies - anyone been treated by him?

Postby Tilli » Sun Nov 28, 2010 11:31 am

No, because I can't just wander in, I need to be referred and, despite having found a sympathetic and reactive doctor amongst the others at my surgery, she's not yet suggested that. Also my employer is being REALLY awkward and I have to use accumulated flexi time for any medical appointments - on a separate issue with them I'm trying to discover if fibro is still recognised as a disabilty under the new version of the discrimination act. If it is, time off won't be a problem and maybe I can get things sorted.
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Re: Prof J Davies - anyone been treated by him?

Postby Ldyalb » Sun Nov 28, 2010 11:43 am

Tilly - Fibro is a disability - don't worry. Contact your local remploy branch for advice (they help people with disabilities and health conditions in the workplace) and see if they can help you work with your employer. You're legally entitled to time off for medical appointments.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: Prof J Davies - anyone been treated by him?

Postby Adele » Sat Dec 04, 2010 11:54 pm

hi tilli. i heard about prof. davies last year on the FM grapevine. i asked to be refered by my gp and waited about 3 months for my appointment. the 8 hour round trip by train/tube/taxi left me bed ridden for weeks in agony and it was a complete waste of time. he told me i had FM (i had been diagnosed years before) and recommended a drug that my GP had already discounted. i didn't find him very approachable.

i have had to do my own research and ask my GP to prescribe medications and to refer me to different consultants and a pain management course. he has also provided transport to hospital appointments (not to Guy's). i know not all GPs are as understanding and i tried different ones in the practice until i found one i could relate to. i have tried many drugs and most of them make me very ill, so i am stuck with the pain. i am still researching online and live in hope.

i have seen pain specialists, a pain psychologist, occupational therapists, physios, a rheumy and my neurologist. i get the best help from my GP as he knows me well. find who you think will help and push for it

:goodluck1: :fingerscrossed: :wine: :hugs: Adele
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Re: Prof J Davies - anyone been treated by him?

Postby Tilli » Mon Dec 06, 2010 1:07 pm

Thanks everyone for your replies. The problem I have with my employer is that they have declared that Fibro "may" be considered a disability - under the former "Disability Discrimination Act" it was included in the list, in the new "Equality Act", it isn't. They're being very clever and awkward at the same time. I have won, and had to fight through my union to get it, a grudging allowance that I can now attend medical appointments with no loss of time, but they're still not accepting the condition as a disability. The issue being that until they do, any sickness abscence specific to it will be counted in their totting up process and can (I've been informally warned that it WILL) lead to my dismissal - I'm on a first warning and can't go missing for so much as pneumonia till something like June 2011 without invoking the next stage.
I'm fighting to keep working, but by golly they're making it tough.
Once I get a statement from them that they do recognise it (can you hear the ice forming?) any abscence noted as a result of Fibro' won't count against me.
The word on the good prof' is also, sadly, what I thought it might turn out to be so I'll stick with my GP who really is doing her best.
You're all brilliant, thanks again.
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Re: Prof J Davies - anyone been treated by him?

Postby denys » Mon Dec 06, 2010 2:11 pm

:goodluck1: Tilly, keep fighting till you win. I know what you mean about going through an absence procedure went through one and then when the doctor employed by the company said he thought I might need to go onto long-term sick I was made redundant with the pay off being just a little to high for me to take them to a tribunal as the solicitor said I would win but the amount I would be awarded wouldn't be as much as their offer :yikes: :fingerscrossed: it will all work out for you :hugs: :xmaswave1:
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Re: Prof J Davies - anyone been treated by him?

Postby Tilli » Tue Dec 07, 2010 8:22 am

Lots happened yesterday, I must have stirred things up. The union is adamant that I'm being discriminated against and are going to "sort it" - sorry, I appreciate the sentiment, but don't think they have much clout. I spoke to my GP who is horrified at the attitude and says she will write me a supporting letter. She's referred me to a new consultant who will, for a fee (sigh), provide a statement that it IS a disability and, as a big chum of my doc', will also write direct to my employer. My line manager has stated he'll give me his "full support", yes, well, seeing as he's the one who chose to begin the whole process by ratting me to HR.......
By the way, I was sent the other week to an Occupational Health examination the result of which was a report to my HR, believe it or not, in support of my condition. HR have chosen to continue to take the "might be a disability" route even so. I do wonder if it's a case of having made the statement they won't be seen to back down. Hmm. Time will tell.
Who's Tilly?
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Re: Prof J Davies - anyone been treated by him?

Postby denys » Tue Dec 07, 2010 7:26 pm

Sorry Tilli fibrofog I see a name and then cant remember how its spelt as it disappears from view when you post a reply (suppose thats what the preview button is for!!!!) :hugs:
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Re: Prof J Davies - anyone been treated by him?

Postby Tilli » Thu Dec 09, 2010 3:41 pm

:) :D :lol: :wink:
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