Please post here for UCHL visits -

[sheppeyescapee]

I got a letter from UCHL today but from the general rheumatology department! Looks like my GP did the referral to the wrong bit It took 5 months just to get the referral done and to receive the letter from them. I rang them up anyway and spoke to someone on the phone who said they would look into it and ring me back, I bet they ring tomorrow when I'm at uni I hope it can be changed to the right team

[Purplesheep]

I just found out today that UCHL can only accept referrals done by GPs, not by consultants. I think it was Professor Grahame's secretary I spoke to, who informed me about this. That's why I've been waiting 3 months for nothing My consultant obviously didn't know about it either, but I've informed them. I thought I would let people on here know as well, so they don't have the same problem. I'm seeing my GP next week and hopefully my referral will actually go through this time!

[clairbear]

Well, I've been. I saw a female doctor who was actually really nice.

Have now a confined diagnosis of Eds 3 / benign joint hypermobilty syndrome after 37 years!

Nothing is really going to change apart from the fact she told me a million times to go swimming, I might get more anaesthetic at the dentist!

Hope others appointments today went well?

[sheppeyescapee]

I rang UCHL general rheumatology back and I was told that the hypermobility clinic is so oversubscribed that people are being shifted onto the general rheumatology list instead. I was told that they are trained in hypermobility but I wanted to run it by here first. Has anyone else been through this? I'm just a little bit wary that's all and I'm not sure what to do. It costs me a lot of money to get there so I don't want to travel all the way there for an appointment that might not achieve anything, not to mention the time and energy it takes to get there So the problem might not necessarily have been with the referral as I was told that the team looks through them and decides which ones to throw over to general rheumatology.

[laracomps]

hiya, I don't think that is what has happened with me, but the situation is similar. I was referred to prof G but no appointments so I have been sent one with a doctor in his expanding 'team'.

I am nervous and worried too, but I keep trying to tell myself it will be ok cos they have to refer to prof G.

my appointment is on Friday.

have you been told who you are seeing? obv u can't put it in here but if u PM me I can let u know if its the same person.

L x

[sheppeyescapee]

I wouldn't feel so disappointed if it was someone from the same team/clinic but it isn't even that, it's just the general rheumatology

[gila]

big sheppey- that is v v v disappointing!
and worrying for all of us... if the hms clinic is soooooo oversubscribed... o owwww...

but maybe...all fingers/toes crossed here's hopin... that having to shift patients over to 'general rheumatology' meant that all the rheumies there now are informed and up on bendy issues ?????
as ideally all rheumies and rheumy deptmts should be...

really really hopin you'll have a good and helpful UCLH rheumy experience!!!
xxg

[Bo1970]

My appointment letter said Prof. G but I saw a lady doctor who must have been one of the team doctors. Having read a lot on HMS, I typed up 2 pages worth of symptoms but still missed something else out which dr spotted and I apparently have flat feet and lump in my mouth. I've never thought anything was wrong with all these things but they are signs. UCLH is a very good hospital, especially Prof. G is resident there so I'm sure he must be training and expanding the team. I heard that appointment slots have been expanded due to demands recently.

I've been referred to physio at UCLH, does anyone know how long I have to wait? I handed a paper work at the reception but all I was told was to wait to hear from them.

Gosh, I am so tired, it's hard to put sentences together.

[laracomps]

ARGH today is the day.... I'm so worried.

Even more so since I realised at 1am Sheppey, that I think my appointment IS with.the general rheumatology department despite what I thought before & said to you.

However, the letter attached confirming my appointment does still say that the guy is part of Prog G's expanding team with "an expertise & interest in hypermobility."

I'm just panicking panicking panicking. It feels like my whole life is riding on this appointment!

Oh well, at least I'll be able to tell you what the general rheum team are like later.

Wish me luck...... Maybe I might leave my trip to the hummingbird bakery till after I've been instead of before

[barkingmad]

Hmm we didnt know this, we will try to find out some more information as this may not be ideal. In the meantime, please post here to let us know how all your appts at UCLH are going.

[laracomps]

Helloooo I'm back!

What a long day...

To cut a long story short, the guy I saw definitely knew his stuff and he works closely with Prof G on their pain managment programme. But it was def not the hypermobility clinic.

He was a little confused as to why I was there, when I got the diagnosis 10 years ago though. I didn't know how to put it into words. It was kind of reassurance I needed mainly I guess because I've had SO many people try and suggest my pain is being caused by depression. Even so much so as that in September 2010, a local rheumy suggested I was weaned off of my pain meds immediately!

He pretty much disputed everything my local rheumy had said. I'm still very flexible etc. He said I'm doing very well at dealing with it though, and the fact that I'm still walking (albeit in constant pain with my stick) and had had 2 children was very good.

He's left my notes out for Prof G. Apparently that is how it is working at the moment. They are so over subscribed at the hypermobility clinic that they are passing people over to general rheumatology, then after an assessment there see where people want to take it. He said Prof G might be happy to put me on his waiting list to see him again, as there were questions he couldn't answer for me. He might also want to see me once a year. OR he might just speak to me on the telephone as he wouldn't need to examine me.

The best thing I got out of the appointment (other than my written report that I can shove down all my disbelievers throats) is a referral to a pain management course at UCLH just for hypermobility. I didn't know such a thing even existed. Even to meet some people in the same position will be awesome. Not thought about the logistics of getting there etc yet. Anyone else been on this course there?

Oh and most of all, I'm the happiest today that i have been in a long time. Which would not be understood by anyone else, considering I've been told there is nothing they can do for me, and no cure. But I am, I'm just happy. I've lived with this for years, I feel like I can finally take control of it, rather than letting it control me.

Sorry if I've missed anything out. Fog is getting to me today. x

[barkingmad]

That is good news and I am glad that you feel it went well. thank you for filling us in on how the system is working.

[sheppeyescapee]

Thanks for the update Sounds quite positive, will phone up and sort out the appointment then I have had a lot of stress going on so this just tipped me over as I didn't know what was going on, too many changes lately

[louloutinks]

Hi

I saw Prof G at the Uclh on the 8th feb just gone. I think it was by chance that I saw him as he called someone else's name and they did not reply so then he called mine. Ooh I went all wired all of a sudden lol! Got so over excited to see him that I forgot to give him the list of family history - 2x A4 pages and I got all forgetful about me lol! He asked me if I get stomach cramps and I said 'no only when my bowels play up' - er d'oh. But I do - I have cramps now. I didn't ask him about the concave st elevations in my ekg that I took with me - when I was told I'd had a heart attack - but then told I didn't due to the fact that there wasn't a certain chemical in my blood and feel I need an explanation for these elevations.

He asked me if I ever get jaw pain - I said 'no'. But didn't tell him I do when I have my teeth grinding episodes that I just cannot stop and end up chewing away my cheeks inside too. There were so many things I told him but so many things I didn't. He must have thought I was a right live wire sitting there rambling on and on!

At the last clinic, I told them about the pains I get on my skin like a burning sensation and that my clothes can feel painful on my skin - they asked if I get this in my feet - I said no - but then I didn't tell them about the severe pins and needles I get. I just feel really stupid that I am such a literal person and do not have the ability to expand upon the questions I am asked!

Of course when I got home I saw my list and thought why didn't I ask about this, why didn't I ask about that. I think I asked all about the trivial stuff rather than the important bits. It is all a bit blurry now - think my excitement got the better of my memory or just brain fog. All I know is that I feel relieved that I have found an answer to most of my questions and that I will be having physio at UCLH.

Oh and another thing that confused me was after the examination, I said that even though my rheumy said EDS3, my docs kept saying HMS, so whenever I said 'my HMS' he corrected me by saying 'EDS'. After what I have read on here I thought that HMS is EDS3, so not sure why he was so adamant.

Also he said EDS but not what type - am still waiting for the letter. But found him very nice and helpful and so glad that I went.

Word of warning - if anyone takes the tube to Euston - do NOT go the fire exit way out - I was faced with a huge upward spiral staircase which I forced myself up and had to sit down on the steps as I thought I would pass out - I just didn't have a clue where I was going!

[Fiona-Jane]

hiya all,

i'll be at uclh for my orthopedic appointment at 1pm tomorrow if anyone would like to meet for a late afternoon coffee in the hospital cafe?



fi xx