Professor Grahame- who is he? Appointments?

[coley]

Ya it's a bit of a crash when you realise that there truly is something wrong, even though you know. It was nice to have confirmation from the professor, but afterwards I thought 'this is awful.' i was reassured by him saying I can do a lot of things to turn it around, so we'll see how I make out with it. The physio is nice but strict, as is mine in Canada, so it's good for me because they will motivate me. And I felt that I could trust her regime, that it wouldn't cause damage. I will try to come to england every year or so for a "tune-up" with professor Grahame and the physio. I'll be excited to get his report.
Take care all,
Coley

[barkingmad]

I am glad that the appt with prof G went well. It is a shame you have to come all the way from Canada!

[Louisem1982]

How do you go about getting an appointment with someone who has a good knowledge of HMS? My doctors don't seem to take it very serious and it puts me off even making an appointment as I usually feel humiliated afterwards....... P.s i'm in Scotland

Lou xx

[nemonie]

You can make a private appointment with Prof G at the Hospital of St Johns and St Elizabeth's in London (St Johns Wood), if you think that you GP will refuse to refer you to a NHS rheumatologist or to his NHS hypermobility clinic at UCLH. The downside is that it will cost about £300, but the upside is the waiting time will be very short.

[Louisem1982]

Thank you much appreciated. I actually think it would be worth it just to be able to speak to someone who understands the condition and doesn't fob it off as it has been before..... they even suggested the pain I am feeling isn't real. Thanks again.

[gila]

hello louise
there actually is also a hypermob clinic in glasgow
http://www.hypermobility.org/clinics.php

and there is a thread on it too
viewtopic.php?f=3&t=5083&hilit=glasgow+hypermobility+clinic&start=45

good luck!
xxg

[Blaadyblah]

Hi Louise. Sometimes when medical types say the pain isn't real, or is all in your head, they don't mean that you're imagining it. They are often (poorly) trying to explain that a particular kind of of pain isn't being caused by an acute injury which needs treatment, but by pain signals generated by nerves frazzled (often from long term pain after an injury).

A little like the phantom pain amputees experience, it isn't the result of an injury to the area, there is no physical cause but the signals are still being sent to your brain. It is real and not (at the same time). This is a complicated subject and off topic for this discussion - but you can read more and ask about Chronic pain in HMS, here., it might help.

[Louisem1982]

Thank you i'll look into that too!

I think he genuinely thought I was imagining it as he followed on by saying lots of people are hypermobile with no pain...... This is why I don't usually bother going to the doctors anymore they just don't take it serious and I end up feeling really foolish x

[Rosie]

Hi all

Louise, you may want to answer the 'lots of people with hypermobility don't get pain' with ' I understand that, but some people do get pain, those with HMS/EDS-H do'. If they come back with 'I don't know about that' you could then ask to be referred to someone who does.

Rosie

[Louisem1982]

Thanks I may just do that, i've been intimidated by doubting doctors for a long time, think it's time to bite back.

Thank you

[Llaurin]

Saw my GP this week asking for a referral, his secretary has just rung and said they can't find any doctor who has an interest in hypermobility in East Anglia, so is going to refer me to London - apparently there's a professor there... she was quite shocked when I named him! So now I'm waiting for my appointment with Prof Grahame

I have to say I feel a bit of a fraud, I really don't have all that many problems and I hope he doesn't think I'm wasting his time. I was asking my GP for a referral because I want to take a more pro-active approach and try to 'head off' problems before they become really problematic, if you see what I mean. But I have to admit to being quite chuffed at the referral.

[star gazer]

Hi llaurin, you might find when you have your appt. with the prof that he come up with things you didnt realise were there. He certainly found things on me I wasnt aware of, same with my son (bad mother moment) i didnt realise how much his skin was affected and the fact that he has a very pronounced Lordosis and kyphosis which along with the scoliosis are the cause of his back ache. I wouldnt worry about being a "fraud" if you are hypermobile with some problems then it is a good idea to see a rheumy for a action plan and that rheumy happens to be the Prof. You will probably have a wait for the appt. but worth it I think to get the correct advise and info.
love
sg x

[bendyneck]

I posted elsewhere about this but think it's probably more appropriate here. I asked my GP for a referral to Professor Grahame yesterday. He's a lovely GP and very sympathetic, (I had to wait two weeks just for an appointment with him as he is so popular), but he is quite sceptical about my theory that all the pain I have been having is linked. He thinks that the Plantar Faciitis in my feet, the Baker's cyst in my knee, the tingling in my hands and arms, the pains in my hips, back, neck, shoulders etc are all coincidental. He also thinks that if you type in a list of symptoms into the internet you come up with dozens of diagnoses/syndromes. To be fair he has sent me for dozens of tests etc but so far, as we know, these tests often come back normal or at best show something minor which doesn't seem to explain the extent of the pain, or the sheer exhaustion that goes with it all. Unfortunately he cannot refer me to Prof Grahame without getting approval from the local PCT as he is out of our area, and it costs 1/3rd extra to refer into London. He is going to write to the PCT asking permission to refer me but suggested I also write a letter outlining why I felt I should get a referral, and explaining my symptoms, but to keep it to about 1 1/2 sides of A4, that was a massive challenge in itself! I was really proud of my letter yesterday and sent it off to him, but now I am worried I haven't explained everything clearly enough or put a good enough case forward. Has anyone else had to do this sort of thing to get permission from PCT for a referral?

Bendyneck

[star gazer]

I didn't have that experience bendyneck, my referral went straight from NHNN and son saw him privately, however I needed a referral to prof Aziz gastro and was told by hospital it would be down to g.p funding, when I saw my g.p his attitude was if you need a referral to see prof Aziz then we will fund it. Maybe my practice has more in its budget or I cought them at the start of their financial year(lastmonth) Hopefully another person on the forum has had experience with this and can share what happened with their funding application.
good luck
best wishes
star gazer.x

[bendyneck]

So today I thought I would check in with my GP's secretary to find out progress of my referral, i thought it might take two to three weeks for the PCT to decide whether to refer me but secretary said it might take three months to make a decision! Then of course I will have to wait for the appointment which could be another couple of months. This has been going on sooo long. I just want to know how to deal with this, feeling really down. Last year it took seven months to finally give me physio treatment for my Baker's cyst because they lost my notes. This year I've been passed from one specialist to another with no results. AAAARRRGGGGHHH!!!! rant over. I guess they think if it takes long enough I'll forget that I was in pain and go away!