Please post here for UCHL visits -

[juliepops]

Hi silvertoes
I rang Prof G's secretary a couple of weeks ago. They have me on the system as a patient but that's all. She said their policy is to see patients within 13 weeks of referral. My referral is registered as 7th Feb which takes me up to beg of May. Maybe I will phone again - let them know how keen ( or should that be desperate ) I am
Have you been before or is it like me your first time - maybe that makes a difference?
I usually a really patient person but this waiting is stupidly becoming an obsession
Julie

[star gazer]

Hi mogwai, Let me know when yours arrives because I was there a few days after you and want to see g.p about referral to orthopods and to see someone about my knees as I think the arthritis has set in there quite nicely now .The g.p has referred me for physio podiatry and orthotics when I saw him after my visit with prof G (as yet still waiting for appt.) but I think it would be very useful for him to have the report to forward on to the relevant teams who I need to see. so come on postie,bring it on
Mind you I had a lower back scan in early Feb at nhnn and still haven't had that report yet and that was for a spinal lesion so some one there needs a kick up the rear because those results you want to know about rally fast!
next thing will be a postal strike
best wishes
star gazer

[jewel]

HI

I was diagnosed last summer with EDS/HMS by Prof Grahame and have since been trying to see what can be done to help me.

I have posted to introduce myself in another place but I wondered if there is anyone who can tell me :
a knowledgable physio at UCLH ? I know names arent allowed on here so maybe you would PM me if there is anyone who has seen someone helpful recently?

I have seen one who didnt know much at all about EDS/HMS and Im travelling quite some distance to see a physio who I thought would have much more knowledge. Thats why Im travelling to UCLH. Ive asked if there is someone there who knows more about the condition but always better to just go and ask to see a particular person I think!

Ive got so much pain and fatigue and need someone who will understand this a bit.

Advice and help appreciated!

Thank you!

Julia

[star gazer]

Hi Julia did Prof Grahame suggest physio at uch as I would have thought they would have specially trained physios ( might be wrong on that count), when I went he suggested the 3 week stay at stanmore which I deferred for now as son is not well enough to be left. if you post what county or region you are in then there will be people who might have used physios local to you with a knowledge of HMS/EDS. I am wondering whether it would be worth contacting the professional body for physios and asking if there was a way to find out how to find one with that area of knowledge. My g.p has referred me for physio and has emphasised on the letter about the EDS but I have not heard anything yet so maybe my local dept. has no one with that area of expertese, it would be easier and cheaper to attend my local hospital which does have quite a large physio dept. if they have the right person. I hope someone on here can offer you some more advice about finding the right one.
good luck
star gazer

[jewel]

Hi

Thank you for replying.yes, he did suggest seeing the Physios at UCL as well as podiatrist and pain management and I argued with my GP about it as well as they couldnt believe that I needed to go to London for physio and I thought I did becasue I assumed that there would be expert knowledge there with the right information and understanding! I have had two sessions with a lovely physio at UCHL, who started off by saying they didnt know much about HMS and EDS! It is time consuming , expensive and tiring to go all the way to London for physio so that didnt make me feel very happy. So I thought someone on here may know someone there that I can ask to see.

However, if anyone else on here does know a good physio in the Guildford area ideally NHS (!) I'd be grateful if you would let me know. Its ure would be a lot easier to see someone nearer to me as the time off work and travelling is getting difficult.

Thank you
Julia

[Rosie]

Hi Julia

HMSA members can ask the HMSA if they know of any physios that specialise or have a good knowledge of HMS in your area.

Rosie

[Mogwai]

Hi Star gazer,

I was referred to see the podiatrist too, and a psychologist and I've heard nothing about either yet. My visit to the clinic was 8th March. But I was up at UCLH for physio on Wednesday last and he told me that the appointments take months to come through. (Luckily I'm only half an hour from UCLH so I go there for physio and my gastro stuff).

My next physio appointment is 5 May, and if I still have heard nothing then I'm going to pop into the department and ask the reception staff at the clinic. But I've had a few tests done at UCLH for gastro issues, and am waiting for some more, and I've found that a polite phone call can go a long way if you've been waiting for news or are unsure what to do. I've spoken to different departments a few times and everyone was very helpful, never made me feel like I was a nuisance, and they didnt fob me off.

So I'm going to try and wait it out until 5th May, but I may snap before then and call!

Mog

[star gazer]

Hi mogwai, I think as the department seems to be so busy at the moment, I wont expect my letter for a while yet I will leave it till May then make quick phone call just to see if it has been posted. I had a ct scan at NHNN at the begining of feb to look at a lesion that had been picked up on mri at the local hospital, it is in the L3 lumbar space and I haven't heard about that either and thats is the one that if feel is more important because it would be nice to know what it is. I have an appt. at nhnn on may 18th and I bet they wait til then to tell me. My g.p is annoyed about that because it would have been evaluated by now, but NHNN wanted to do their own scan so we are still waiting. I know all these departments are so over run but sometimes you just want or need the info quickly. I have come to the conclusion that it must be a benign lesion otherwise they would have phoned me or written straight away however just need to put my mind at rest and not worry about it.
come on postie
star gazer

[Purplesheep]

I finally saw Prof. Grahame yesterday and unfortunately was really disappointed. My first thought directly after the appointment was "what a complete waste of time" and that's how it still feels

He confirmed my diagnosis of HMS, which is apparently "effectively" (?) the same as HEDS (I thought it was the same, but there you go), and that was basically it. I already knew I have HMS, it's pretty obvious, so the ordeal of travelling to London just to be told what I already know is pretty pointless. I have no idea what he will put in my letter and which, if any, recommendations he is going to make. I didn't really get any answers to the questions I asked, nor did Prof. Grahame actually examine any of the joints that are causing me problems. I was hoping that he would at least look at my shoulder, as 6 physios so far haven't been able to figure out what's actually going on with it. The only thing Prof. Grahame seems vaguely interested in were my very arachnodactylous hands, other than that he didn't really seem to care about anything I said. He even interrupted me constantly when I was answering some of his questions, which I thought was incredibly rude. When I asked about how to take pain medication, as I had been given conflicting advice by some GPs, he replied that I shouldn't be taking painkillers at all if I get side effects, because "medication isn't the answer". I know it isn't, but sometimes it's the only way to cope! I don't take them for the fun of it. He also seemed to be constantly worried that I would "get upset" or be "insulted" by him, eg when he said I had a long, very marfanoid face. Oh yes, because I am female and in my 20s, all I care about is my looks and that people think I'm pretty!

Sorry about the rant, it just helps to share my frustration somewhere. I had been really looking forward this appointment as I thought I'd finally get to see someone who understands and who cares, that's what makes it so much worse that Prof. Grahame obviously didn't. I really didn't feel taken seriously at all, I very much got the impression that he decided pretty much from the outset that I was just a "mild" case who didn't need much help or attention. I know there are people who are affected much worse than me, but that doesn't mean that I am fine or don't have the right to be treated with respect and get the help I need. The journey, the night in the hotel and the treatment from the UCHL nurse were a complete nightmare too, so I'll probably spend the next 3 or 4 days in bed recovering from the trip and feeling bad about myself.

[star gazer]

Oh purlpe sheep thats really sad that your experience didn't go so well. when I saw him at UCH I wanted to explain more to him about my symptoms and the problems they cause and like you I felt that I was interupted to answer the question he had just asked, however before I left he said I had HEDS and marfans habitus.I did feel that he had done a thorough exam of all my joints but there was no comment on the problem ones, there was lots of measuring, so I feel that my dx was acurate and it will help in the future to have this down on paper. I agree about the nurses it was my first visit and I didn't know what the protocol was and they made me feel a bit stupid when I asked twice where they wanted me to leave my urine sample
I did however get my feedback letter today and it does clearly state hypermobile joint syndrome known as eds hypermoblie type and also mentioned the marfans bits. as for further info the avdice is to attend rehab at stanmore for 3 weeks, oh yes also mentioned a scoliosis and various other things that he obvoiusly had noted during the exam so maybe wait and see what his report says, you might find that he mentions the things you think he may have missed. I did mention that I was having physio and he asked if they had knowledge of hypermobile issues. But I wondered what would happen about checking for things like mvp etc, I did see a cardiologist before my pots dx so I could ask to see him again to arrange and echo, also will mention it at my NHNN appt. next month. I do feel left a bit high and dry because I don't know what happens next either, do we just see different specialists as and when different issues arise.And who do we ask if we need to see a specialist. Prof Grahame discharged me after my appointment, saying he didn't need to see me again,although when I took my son to see him privately he asked if we would be interested in a research that they are doing into HEDS and POTS occuring together, my daughter has yet to have her appt. so we will see what happens with her as she will be going the UCH route.
Maybe some other people here will be able to help us with what happens next, I only got my letter this morning so was a bit ambushed seeing it all in black and white, it made it all too real,but at least it is solid enough for ESA and DLA as it also mentions limited walking and chronic pain syndrome yipee
chin up
star gazer

[star gazer]

sorry spelling is really bad in my post reply I can't face an edit and correct becacuse I'm not working properly today, brain has gone on strike and fingers don't work either

[Mogwai]

Star gazer,
I'm glad your report arrived, I've still not had anything yet, boo. But hearing that yours has arrived has revived me a bit! The lift in my flats is working again too, so I'll go and check the post. Usually I wait until evening as sometimes we get an afternoon post.

Fingers crossed,
Mogwai

[Mogwai]

My report arrived!

It's got copies of the referrals attached too, one to podiatry and one to COPE NHNN, and it recommends my GP starting me on somthing to help me sleep (thank you). I'm very pleased with the outcome. It doesnt mention the resutls of the blood tests, so i guess they were all fine.

I can relax now! No more scaring the postie.

Mog

[star gazer]

Thats great mog, its weird how somthing like that becomes so important I have seen COPE mentioned before I must have a lok and see what it is all about.
Not heard from physio yet or podiatry but those were through g.p looking for someone with knowledge of hypermobility and not through prof G. I will see g.p after easter holidays to find out what is happening.
good news about the lift too
star gazer

[Purplesheep]

Thanks for your reply star gazer.
It's kind of good to know that I'm not the only one who was treated quite rudely. I had the same problem with finding the room for the urine sample, thankfully my OH was there to point it out to me. The nurse then had a go at me for not "standing up straight" when she was weighing me - I'd only had 2-3 hours sleep the night before, thanks to the rubbish hotel we stayed in, and was struggling to stand up at all. I said "I can't stand very well" and she just said "Oh", rolled her eyes and then watched me really closely I put my shoes back on, as if I was too stupid to do it on my own. It was really patronising and humiliating.

The thing is, I already have a diagnosis for HMS, I didn't really need to travel to London just to get another one. I was hoping for some support and advice in managing the condition, but apparently that's asking too much. I doubt the report will say much other than "HMS with incomplete marfanoid habitus", since I didn't even get to discuss many of my other problems. I have some dysautonomic issues too and these weren't even touched on in the appointment, even though I mentioned problems with feeling faint. So I don't think I will get a referral or recommendation for anything in that area. Apparently it's my own fault too that I haven't had a pain management course yet. I just don't see how Prof. Grahame can make any recommendations when he spent almost no time asking me about my problems or what treatment I am currently receiving, so I am expecting no help at all from the feedback letter. So basically all I got out of the appointment was a diagnosis I already have, some casual sexism and a massive flare-up. I just wish I'd stayed at home