Please post here for UCHL visits -

[Rosie]

Hi louloutinks

It may be that Prof Grahame stressed EDS rather than HMS as that name seems to get more rection from drs. As you say, your letter should say what type EDS you have, but if it was anything but EDS-H he would probably have discussed having further tests.

Rosie

[louloutinks]

I thought that as he did not request further testing...should be with me soon!

[jakerleen]

Hi hun, so glad I came on here today to read about pins and needles, at least I am not on my own. I had my appt with Prof G in December 2010 and I was just as excited to see him, I was hyper when I went in.

He told me that EDS III and HMS would be put together on the letter to make sure tht the docs understood it was one and the same and treated it as such. He also said that docs understand the words EDS not HMS so he puts both on the letters to make them realise and get them to start understanding more.

My letter was 3 weeks after the appt so you shouldnt be waiting too long for it now.

He is extremely thorough and the letters are detailed so the doctors understand what he means. Worth their weight in gold at my surgery, for the first time ever I got a phone call from them asking for me to have my blood tests because they were a little behind ....... 2 years behind if they wanted me to be precise. The docs are finally listening to me because of the Prof.

jackie xx

[louloutinks]

Hi Jackie

I went to my docs the other day about my head/neck pains...I thought it was occipital neuralgia due to the pain right under the base of my skull and they said it was a tension like headaches as I am stressed about finding out about EDS and DA! I have never felt more relieved as I have an answer to my problem. She also said she would leave medication to the experts and even had to google dysautonomia!

Just hope they will be more helpful once they receive the letter. I too get pins/needles/numbness esp in sleep and can wake me up. I get burning/painful patches on my skin that can last days and days too.

Just so glad I see Prof G!

[Bo1970]

My letter was 3 weeks after the appt so you shouldnt be waiting too long for it now.

Four weeks on, I'm still waiting for my letter but I saw Dr K instead of Dr G at UCLH. I called the office twice so far but each time I was told that the secretary is away and message will be passed on.

[sheppeyescapee]

A bit nervous this evening, have my appointment in general rheumatology tomorrow. I hope they are as knowledgeable as the person on the phone claimed that they were. Still a bit peeved that I couldn't get an appointment in the hypermobility clinic. We shall see what happens tomorrow though

[barkingmad]

hi let us know how it goes. I will keep my fingers crossed for you.

[shedevil_kt]

Hi sorry to start a new tread I am sure which section to put it under.

I went to meet Rodney Graham in London yesterday and got my diagnosis finally. I have hypermobility syndrome , EDS , POTS ,fibromyalgia & Chronic fatigue syndrome. I am a lucky person lol I can not begin to tell you the relief it is to know that I was not just making things up as others had believed. Proffesor Graham even said he was amazed with me to be in such good spirits as every joint i have is hypermobile he refered me for help I feel 10 stone lighter. I can start to get myself back to a seblance of normality and feel that now I can officially say I belong here with you perople.

I met a lovely couple at the hospital and ended up chatting to them for a couple of hours it felt amazing to be able to talk to someone who understands what i am going through at the moment . I feel that i can now get more envolved in local groups and talk on here more I never wanted to before as i almost felt like a fraud as not been officially diagnosed it is just nice to no that im not alone i fit in somewhere i am normal (well as normal as you can be with these issues).

Felling fabulous as it now means i can come of morphine which is not helping and start to repair the damage all the meds have done to my insides lol. heres a little story to end on I used to add garlic salt to all my dinners my partner told me it was bad and after 2 years i finally got salt out of my diet only to be told that i need salt in my diet when you have pots its actually good for me doh .

Thanks for lositening katie.

[Spireite]

Hi Shedevil

I'm glad for you. Have I told you before I am the local group leader and I live in Milton Keynes also so do get in contact if you want to chat. The local group is meeting in Oxford tomorrow (5th) for a pub lunch if you wish to join us. We are a small and very friendly group.

[sheppeyescapee]

The appointment went reasonably well I feel, a couple of things confused me but apart from that I'm pretty happy. At first I was taken to have my blood pressure done, I was stressing myself out so much (the day didn't start well and medical people stress me out) that my blood pressure (normally around 80-90/60-70) was 146/80 I've never seen it that high before. Once that was done I saw the rheumy and we went through the history, why I was there instead of Bath, what I expected out of it. They redid the beighton score and I'm still a 9/9 Was told that I have some bits that are classical eds and others that are eds-hm, but because I have stomach issues and autonomic stuff that it was HMS because apparently EDSers don't have those troubles I know it's just a matter of semantics, but I have my DLA renewal end of this year and I don't want them to not take it seriously because of the HMS label Anyway so they are going to do a referral to stanmore, prof aziz and prof mathias. Have been discharged now. Got more done in 1 appointment than a whole year at Bath

[evenwen]

Erm, that is odd. a)They are supposed to be the same thing and b)I was told my gastric issues were "All down to your EDS" (hypermobile type) so don't understand why you were told that

[sheppeyescapee]

Seemed dead set against using the EDS label Was reading through a list of stuff to look out for as well on the computer At least he was nice and took me seriously and didn't talk at me like I'm five because I have ASD like other medical professionals have done

[louloutinks]

Hi Sheppy, who did you see?

GI motility issues are eds related. Maybe you did not meet the criteria in some ways. Prof G was adamant EDS if I said hms, yet in the letter he wrote the equivalent of. Sending me to physio and Gastros.

Glad you got a dx. They said my is bjhms and he has autism. I have heard that if sensory/asd is present they tend to say BJHMS instead of eds - then I recieved a letter for my child that states EDS!

[sheppeyescapee]

Just to clarify it wasn't Prof G that I saw. It was someone from general rheumatology and I'm not able to name them on the site but will answer if anyone PMs me.

[barkingmad]

Hi Sheppey,

I am glad it went reasonably well. I was thinking of you.

The team at UCH have had some training and I am guessing that there was a little bit of confusion because you are right in all that you have said. HMS and EDS-H is deemed to be the same but I am guessing it may be that the rheumatologist you saw may not believe that. I am not sure if Prof G is clinical lead but I have been told that he (and Dr KazKaz) are triaging referrals and any complex cases are being referred back for his and Dr KazKaz's consideration.

Gastrointestinal disorders are beyond a doubt in my opinion linked to HMS/HEDS but 'officially' some research needs to be conducted to prove it scientifically. I believe that this may happen within the next few years....research and results always take too long in my opinion but it has to be done properly so as to become 'officially recognised as an issue within HMS/HEDS' .However by sending you to Prof Aziz that will go in your favour.

Sheppey, dont worry about your DLA claim and the semantics used because with all the separate referrals you have they will stand you in good stead.
Could you let me know who the Dr you saw was via PM because I am meeting UCH in a couple of weeks and it is always nice to have an understanding of professionals beliefs! As always I am happy to send the template letter explaining the ins and outs to the DLA folk!

I cant remember who said that they were told they had HEDS but in their report it said 'equivalent to' but this is a standard part of the report (or template) so we all tend to get that. Dont worry it will still be seen as HEDS if you prefer to refer to it as so. I usually get asked what my preference is for myself and my kids.