Please post here for UCHL visits -

[Bo1970]

I was going to post about BHJS vs EDSIII so I'm glad to find everyone discussing it already.
I know BHJS and EDSIII is the same thing but I was under the impression that they have recently started to use EDS + type rather than BHJS to avoid confusion. But you know what? I received my diagnoises letter from Dr K and she uses BHJS.

[loosebones]

Hi Bo - I've just found the thread that talks about the difference between the variety of names used for the condition. I'll post the link for you as it's quite an interesting discussion:
http://www.hypermobility.org/forum/viewtopic.php?f=4&t=2358&hilit=the+no+difference&start=150

[laracomps]

I think I forgot to update here after I received another letter from the Professor at UCHL.

It basically said he had discussed my case with Prof. G. as promised, and I will not be getting an appointment with Prof. G. nor a phone call, nothing (I was told I would get a phone call, one off appointment, or he may wish to see me yearly).

I feel really upset and disappointed to tell you the truth. I feel I have unanswered questions, the Prof I saw even openly admitted he didn't know the answer to some of the questions I had asked, especially about what to look out for in the kids etc. Which is one of the big reasons he was going to talk to Prof G for me in the first place.

I also wanted to discuss the possibility of POTS, and probably other things but of course my mind escapes me.

Feel very angry at the NHS at the moment, especially as I'm sat here with my good shoulder subluxing.


barkingmad - is that template letter you are talking of available to any of us applying for DLA or have I misunderstood? Thanks

[Bo1970]

Hi Bo - I've just found the thread that talks about the difference between the variety of names used for the condition. I'll post the link for you as it's quite an interesting discussion:
http://www.hypermobility.org/forum/viewtopic.php?f=4&t=2358&hilit=the+no+difference&start=150

Hi loosebones,
Thanks for the link and the topic discuss whether EDS because of other related issues etc. However, I was referring to HERE.

Table I. The 1998 Brighton Criteria for a Diagnosis of Benign Joint Hypermobility Syndrome [Grahame et al., 2000]Major criteria

(1) Beighton score of ≥4/9
(2) ......

Table II. Major and Minor Diagnostic Criteria for the Hypermobility Type of Ehlers–Danlos Syndrome [Beighton et al., 1998]Major criteria

(1) Beighton score of ≥5/9
(2) ......

My Beighton score stated 5/9 and still classfied as BJHS.
All these confusiong amongst EDSers/HMS, no wonder DWP or some GPs are confused as well.
People suffer with varied severity of e.g. IBS but they are still called IBS so why not EDS/BHJS/HMS/any other name I might have missed...

[housecat]

Hi, got a letter this morning to make an appointment in the Rheumatology Clinic at UCHL. My GP asked for me to see Professor Graham but my actual appointment is to see a Dr {mod edit - medic's name removed. PLEASE READ THE FORUM RULES} I questioned this over the phone but was told that this is who I will be seeing.
Didn't find out I was hypermobile until I broke my tib and fib last year. Physio diagnosed me and have since been told by another physio (when I go to hypermobility physio) that my problems are widespread and severe. GP agreed that I needed to see a specialist after seeing my family history. (3 close relatives have had brain aneurysms)
Just wondered if anyone else had seen Dr ////??

[laracomps]

Hiya,

I haven't seen the doctor you have named - just to let you know the mods will remove the Dr's name from here as we can't state doctors other than prof grahame etc who have something to do with HMSA.

Anyhow, I digress.

I saw someone from general Rheumatology too. What they are doing at the moment is passing people over to general rheumy because the hypermobility clinic is too over subscribed. When you are seen there, the consultant you see will then decide if your case needs to be passed over and then referred to Prof G's team.

I saw someone very good (albeit a bit abrupt in his manner) and he said he would discuss my case with Prof G. and I would possibly get a phone call, or an appointment with him (see my post above) but unfortunately I will not get any follow up contact from Prof G as he has no more to add Although I uess my case is a little different as I was actually diagnosed by professor grahame over ten years ago. The problem being (for me anyway) that I wasn't aware of how much was going on back then, nor honest with myself let alone anyone else, which is why I wanted a follow up to discuss what is actually going on, as well as advice about what to look out for in my children (almost 3, and 10 months).

I suppose in many ways it might be because the guy I saw was very good, as I said. He knew a lot, and works on the hypermobility pain clinic with Professor Grahame, but he still said he didn't know the answers to all my questions. He said I am extremely hypermobile and gave me a brilliant written medical report several weeks later which is one of the main things I wanted.

Hope that all makes sense. My uncle had a brain aneurysm too.

One thing I'm not sure I read on here was to be prepared for student Doctors to be present for your appointment. Not sure if this is just a general rheumy thing, or whether I am being a plank for not even thinking about it (it is a teaching hospital after all!) but there were 2 female student doctors present for my appointment and I was not asked if it was ok for them to stay, just assumed. Just thought I'd mention it in case I hadn't. In some ways it helped as it meant he was showing them my problems and stating how extremely hypermobile I am etc whereas normally he might not have said it aloud. I personally didn't mind at all and would have let them stay, anything to spread the word in the medical community about HEDS.

L x

[barkingmad]

Hi Laracomps,

The template letter I was talking about is a basic advocacy statement that the HMSA can provide on a case by case basis for HMSA members. I have already done one for sheppey so his will just need updating. Usually we need to see some medical reports so we can incorporate medical information and tailor it to fit.

hope that helps.

It was certainly not ok that you werent asked if you minded medical students being in the room. Whilst all teaching hospitals have a duty to provide clinical placements and education to their students it is not acceptable to 'assume' that by you not being asked and therefore being able to refuse, that you have agreed to their attendance. I would have been pretty upset if they hadnt asked me, although I do normally say yes these days when I was very vulnerable and hadnt been diagnosed at the time I refused to allow them in the room with me, coping with one professional was bad enough without feeling 'watched' by students....it is a common curtesy that you should always be asked

[sheppeyescapee]

Got my letter from UCHL today! Only took a week, was rather shocked when it came As he said at the appointment the diagnosis on the letter is HMS. Confirmed that I am a 9/9 on beighton scale, referrals have been done to stanmore, prof aziz and prof Mathias. Also said that I need my feet looking at as my ankles are screwed and I have quite bad hammer/claw toes.

[charm1]

Hi,

Sorry if this should have been in a topic already posted.
I wanted to know if I am best to ask for a referral from my daughters G.P or or paedeatric consultant, to see prof Graeham, and also where would I ask for the referral to see him. My daughter has been told she is hypermobile, but told to do half an hour a week physio and all should be well!!!!!
Her doctors seem be fobbing off everything else, i.e severe headaches, flat feet chronic fatigue 24/7 pain e.t.c
I will be willing to pay for a private consultation, but thought I would try for a nhs referral first.
thanks

[Fizz]

How old is your daughter? My son was referred to GOSH by his paediatrician after he developed chronic pain syndrome. He was 10 at the time, now 11, and was seen by a rheumy, an OT and a physio at his first appointment, for diagnosis, and then ended up on the GOSH rehab course which did get him much more mobile although problems with pain persist. He's discharged from GOSH now and back with local paediatrics. Sadly, there does not seem to be much help locally for chronic pain.

Is your daughter already seeing a paediatrician or local rheumy? That might be a good place to start.

[shedevil_kt]

hi just wondering how long everyone;s letters took to arrive after diagnosis? I saw proffesor graham on 03/03/2011 and still not heard nothing the problem is doctor stopped all pain meds as they were not working and will not give me anything new untill recieve letter and i am suffering really bad now any advice will be helpful.
a very painful and sad katie

[charm1]

Hi,

Just to say thanks for the help, I decided to write a letter to our family G.P rather than the paed consultant as she has only seen him once and not due to see him again until may.
The letter I wrote expressed my deep concerns for my daughters health deteriation over the last couple of years, and also the my dissapointment that we have had a severe lack of medical support/advive and understanding from anyone.
I highlighted the fact that my daughters education is being affected and I asked what his thoughts would be on referring her to someone with more expertise in this field.
I followed the letter with an appt, which we have now had, and he has agreed to refer her to a more specialised doctor, and said leav it all to him and he would sort it out.
I had mentioned in my letter that after my own research i found Prof R.green and his team to be (the right guys for the job)
Although our G.P didnt say where she would be referred to at least he has acknowledged that more needs to be done.
I will keep you updated on appt place and timescale of the referral..

[barkingmad]

Hi Katie,

It can take between 4-6 weeks to get the letter out to you because the clinics are so busy and obviously see a lot of people each week. If you havent heard by Easter give the secretary a ring.

Abi and I visited with UCH staff last week and we were really excited with their plans for the future. They are offering a very comprehensive service and using Stanmore for back up. Things seem to be going well in London for HMS folk from throughout the UK!

[louloutinks]

Hi all

does anyone know if you can pay to see Proff G or a neurologist privately and how much it would be.

A and e sent a report to my doc saying that I should see a neurologist and he is refusing to send me to one. I have already seen Prof at UCLH but I know another referral will tkae months.

Thanks

[star gazer]

Hi LouLou, yes you can see prof G privately at the hospital of st John and st elizabeth

http://www.hje.org.uk/page/home

there is another thread with more details about his private referrals also what type of neuro did you want to see as someone maybe able to pm you with info.
Prof Mathias Autonomis sees paople privately but that might not be what you are looking for.
all the best
star gazer