Please post here for UCHL visits -

[barkingmad]

I know!

[juliepops]

just thought I would give you all an update
received a very thorough report after my visit to UCLH along with info for my local physio.As I said before, I have been reffered to Stanmore and now have an outpatients appt there on 12th Sept. Fingers crossed they will agree with UCL and I'll go in for the rehabilitaion programme at some point.
Julie

[Tess]

Steph,
I hope you will get to see someone soon who can help!
I've just got off the phone to UCLH, after being referred by my GP, I got a letter today, asking me to make an appointment. When i phoned, they said i'd been allocated to 'General Rheumatology' - so i explained that i'd already seen a local Rheumy, and that the whole point of me being referred (to a hospital which is a 5 hour drive away from home), was to see someone who specialises in Hypermobility. The lady was very helpful and looked at the letter from my GP, which clearly stated that my referral was for Hypermobility, and even specified Prof Grahame as the consultant i'd like to see!! So they are going to discharge me from the Rheumy, and then try to re-refer me to the Hypermobility clinic, and I should hopefully get a new letter in about a week, to make an appointment.
I'm wondering if this is what happened with you? If i hadn't said anything on the phone about wanting to see Prof G if possible, then i wouldn't have realised it was the wrong clinic, and would've ended up in the same boat as you were. Apparently the referral letters are given to a consultant, who grades them and decides which clinic to refer them too - just don't understand why they decided to send me for General Rheumatology, when it was quite obvious i need Hypermobility clinic?!
Has anyone else had this problem?
Tess.

[sheppeyescapee]

Hi Tess, Yes I too was referred to the general rheumatology. The hypermobility clinic is really oversubscribed so they are looking through cases and if they think that general rheumatology can handle it then you get passed over there. They have trained up the general rheumys to cover standard hypermobility cases and the hypermobility clinic is only seeing exceptional/more complex cases If they didn't do this, the waiting times would be completely unacceptable, but there is only so much one team can do.

[Tess]

Oh right! So if i go to see the general rheumatologist, then they should still hopefully know a lot more about Hypermobility than my local one?? I just don't want to travel all the way down there if they can't tell me anymore than the one i've already seen.
I will wait and see if they re-refer me to the Hypermobility clinic, but i suspect that it will probably come back next week with the general rheumy again, as i'm not a particularly complex case.... So then i'll have to decide if it's worth bothering to go or not.
Was mainly hoping for a more detailed diagnosis, and some tests for the autonomic stuff, as the local rheumy just literally said i have 'Hypermobility', gave me a leaflet and referred me for some non-specific physio for 3 sessions, then i was discharged.
Tess.

[sheppeyescapee]

Well the one that I saw was much better than that! He did all the referrals that I needed to be done, to Stanmore, NNH and St Barts, wrote a very detailed report about everything. A couple of misunderstandings, but a lot better than the one I was seeing previously.

[Tess]

Thanks for the info - i will probably give it a try then and see what happens.

[Laurabg]

Hi

I'm completely new at all this.
I've been using my companies medical insurance to try to work out what on earth is going on. I've had health issues since 2002
had children and carried very badly. After children things have got quite bad. I've collected every prolapse possible. My spine at l3 and l4
has prolapsed and causing a great deal of pain. I struggle to eat normally now as my bowels do not work probably. I suffer with pain and my fingers can
suddenely bruise for now reason.
My Gp hasn't had much to do with my over all health. I was diagnosed by a consultant at the London Bridge hospital. Due to my insurance being limited
I have now moved over to the NHS. I phoned the proff secetary because the referral seemed to be taken so long. I was told that my Gp hadn't
given much info so I was graded as a C. I've been referred to a Dr [Modnote: Name redacted, see forum rules].

Can someone give be advice.

Thank you

Laura[/size]

[madmum]

Sorry i have been away for a while but summer hols has meant a hectic time. Saw prof g on 30th. After a confused start he diagnosed me as eds111 hypermobile type. Suggested physio,also nag over weight(i know that but how to exercise with severe spinal and knee pain is difficult). He is writing to the gp to request a referral for physio,that is it. No advice for sleep,pain or anything else. I am not surprised to be diagnosed but have been left feeling down as missed for so many years and now have a diagnosis but no further forward. What do i do now?

[Englishgremlin1]

Had a very good visit to UCLH today - backj to stanmore as things need a thorough check over, so nice to meet understanding and knowledge.

[Silvertoes]

Had a good report from the Prof. He included the referral letters to Stanmore and the neurology hospital. I wasn't sure about funding issues for Stanmore as the Prof wanted me to have a 3 week stay so gp is also going to refer me so if there are funding issues it will be dealt with quickly.

[Louise]

hello all.

I went to see Dr Kazkaz at UCH hospital in London after almost 3 years of NHS referals to numerous physio's etc, this is what she had to say in a nutshell that i score 8/9 Beighton score outside the scale, flexability of shoulders, thoracic spine and hips. Feet are flat with pronation and bruising on legs and thin BCG scar.
She agrees that i have Benign joint hypermobility syndrome and vit D was .44 (down arrow here) recomments starting vit D3 1000 IV once a day.
She comments about my stomach pain that the hospital havnt been able to diagnose for years, thinks it is gastrointestinal dysmotility and says to take movecol?
I have depression and Anxiety and have done for about 4-5 years but she thinks its tied in too.


overall i think this is good to know but im still not 100% what it all means, i was so shattered traveling 4 hours to get there for 9am that i sort of glazed over can anyone tell me in simple terms.

vit D is the sun vitamin isnt it? im surprised that thats low as im in the sun alot

[Louise]

oh thought id mention that im currently laid up with a slipped disc in my back and my osteopath says my spine is so flexable he actually called it terrible is that what the thoracic spine part is about?

[nemonie]

Hiya,

Welcome to the boards. You will hopefully be getting a full written report through from Dr KK in a few weeks, which contains more info (that you can google or search on here for ).

The thoracic spine is a region of the spine (When looking at or talking about the spine, medics split the spine into discreet portions - the cervical (at the top), the thoracic region (mid-spine), lumbar (lower-back), sacral or sacrum (where the spine meets the pelvis) and the coccyc (the evil bits at the bottom). The thoracic region is the longest portion. You can google spinal anatomy if you're interested. Having hypermobility in that region means your movement is more than a normal persons would be in that region.

For the feet bit - this is classic HMS or EDS feet. We have nice high arches but when we weight-bare our feet flatten out and the arches disappear, most often pronating. This means the foot rolls to the inside edge on weight-baring. You may need to see an orthotist or podiatrist about getting insoles to correct this. Have a search on here we have lots of posts about feet and insoles.

HMS or EDS people tend to bruise easily and we also tend to heal more slowly and also can have poor scar tissue - in particularly paper-thin scarring (papyraceous scarring). Your BCG scar may have been your only or most obvious example.

We also tend to have digestive and gut problems, IBS being one and dysmotility another. This is just a fancy word that means stuff doesn't get moved along the digestive tract as well as it should and also we have a harder time pushing stuff out (sorry for tmi ). The theory is that our guts are just as stretchy as our joints and skin, so have difficulty coping. Movecol is basically a kind of goop that you drink that helps lubricate your insides and bulk up everything so it all comes out easier.

Lots of us have low vit D (also low calcium, which tends to go hand in hand with vit D, so get that checked by your GP). You do get it from sun but also from your diet and if you're having gut issues then you may not be absorbing enough from your dietary intake.

[Tess]

Hi Louise,
I am going to see Doctor KK in a few weeks at UCLH - was just wondering what sort of things she asked you about? I don't really know what to expect and would like to be a little more prepared before seeing her so i can make full use of the time. Also, how long did your appointment take?
Thanks,
Tess