Centre of Ecellence

[sharon453]

Had my second appointment at the London centre, it feels great speaking not only to doctors but patients who know what you are talking about. Also met Jean which was lovely x nice to put a face to a name. It was great chatting with you Jean. Take care everyone, and if your not already going to a centre of excellence try and get a referral. With love Sharon x

[Hidden]

Hi Sharon,

Really good to hear such positive feedback about London CofE, I am currently looked after by a team of doctors at the Nuffield Orthopaedic Centre in Oxford. They are all lovely, but to be honest my treatment is very slow and drawn out. I am having lots of joint problems at the moment. It started with my wrist and shoulder, my shoulder worsened until I could hardly move it. After two failed steroid jabs, I had a guided one which has, touch wood been brilliant. Pain almost zero unless I try to reach up or put my arm behind my back, but I can cope with that. Following that my left hip started hurting, within a few days I was having problems walking on that leg. The pain has now gone into my groin and round into my back. Also get random pain in my buttocks, sometimes on one side and sometimes the other. It feels like the morning after I imagine it would if I was to do 1000's of squats!! Have had an x-ray of hip done and waiting for results. Am having to use crutches to walk otherwise I would not be able to walk at all.

Am seriously considering getting a referral to London CofE. Only thing putting me off is that I would have to travel 45 mins on a train and then trek across London on the underground. Being in lots of pain I don't know if I would have the strength and energy to make the journey.

Have spoken to my G.P about a referral and she is happy to refer me, but also has the same worries as me about the journey.

C x

[Jaxxi in reply to Hidden]

Hi C! Have you considered using taxis to get around in London? More expensive obviously but if it means you can get to appointments, might be worth a look.

[Hidden in reply to Jaxxi]

They have accommodation at the London C of E if it would be easier for you to break your journey into travelling there one day and back the next.

[Hidden in reply to Jaxxi]

Thanks for your advice. I have been chatting to a few of my friends about it and they suggested getting a black cab from the station. Thanks C x

[Jaxxi in reply to Hidden]

Next time I go to London I am going to arm myself with this app - hopefully it will solve the problem of standing around waiting for an empty cab to pass when you are done with your appointment hailocab.com/london

[sian35]

Hi

I have had this type of hip problem in the past with my behcets.In the end it did go away but then started somewhere else - the leg /hip problem is v inconvenient because of walking as you say. It tends to move around different joints - apparently that is typical of Behcets.

I live in Devon - it can take me 5-6 hours on a good day from the hospital to my front door but I still do it for the care I recieve, even when I have been v ill. The drs there also have access to funding for drug treatments. If necessary you can get help at the station. Which station do you come in at in London - maybe the bus would be better than the underground? Whitchapel sation is hard work! You can look at the transport for London site or maybe Jean the support worker at the centre could give you some ideas.

My dr worries about me getting tired too! I try to rest up after the appointments It does take a little while for the appointments to come through so maybe your hip/leg problem will start to improve.

Good luck with evertthing

Kind regars,

Sian

[Hidden in reply to sian35]

Thank you so much for your advice. I am at my whits end with constantly being in pain and getting nowhere with treatment with the my local hospital. My pet dog gets luxury treatment at the vets and I get left to suffer!! C x

[Zebra]

If you ladies are on Facebook, we have a private hidden group for uk patients where you can meet local folk and always have someone who understands. Do private message me your profile details so I can connect you. You will also find good knowledge about the best local specialists if a journey to one of the three centres is too far. There are some amazing experienced clinics around. So glad your appointment went well.

[nettie545 in reply to Zebra]

Hello Zebra, can you tell me how to find you on Facebook to private message you? I need to find local specialists or centres. Didn't even know there were clinics! Thanks

[Hidden in reply to nettie545]

Hi Nettie,

Sorry to step in, but I just happen to be on line and see you are looking to contact one of our clinics.

Depending where you live, we have centres in London, Birmingham and Liverpool.

I am the support worker in London, so feel free to message me with your details and I can put you in touch.

All the best!

jean

[Hidden in reply to Hidden]

Hi Jean, I am hoping to be referred to the London Centre of Excellence. I have spoken to my G.P about it before and she said she is happy to refer me, if that is what I want to do. Her concern was, was I going to manage the journey feeling so poorly and being in so much pain. Journey would be 45min on train to Paddington, then could catch a black cab from Paddington to Whitechapel!!

I was diagnosed about 3 years ago have been, being looked after by a team of doctors at the Nuffield Orthopaedic Hospital in Oxford. At first my symptoms were mouth ulcers, occasional genital ulcers(which I was told was Herpes on many occasionas, and even got sent to the STI clinic to get screened!!), headaches/migraines, joint stiffness and fatigue. My condition has flared up on many occasions over the past 2 years. I am currently experiencing a flare, which I would say function wise is the worst one I have ever had. I got a mouth full of ulcers, migraines that reduced me to my bed, abdominal pain after eating which sometimes ends up with me going straight to the bathroom, joint pain - initially it was worst in my right shoulder and wrist. After 2 failed steroid injections I had a guided steroid injection, and it is 90-95% better. I now have pain in my left hip, lower back and right groin. I am having to use crutches to walk as it is so painful to put my full weight on either of my legs. My G.P has put me on Gabapentin and at present the dose is at 600mg 3 x a day, to help with the pain alongside Tramadol and Amatriptyline. Even with all those drugs in my system I am waking between 3 and 5am in agony.

Your advice would be greatly appreciated.

Many thanks. Clare

[Nick12 in reply to Zebra]

Hi Zebra can you tell how to find you on FB so we can get the information and morale support from other sufferers my wife so desperately needs.

Thanks

Nick

[Zebra in reply to Nick12]

Hi Nick, I am dropping you a private message here with my Facebook profile I use for Behcet's. If your wife drops me a friend request I will add her to the private group for UK patients.

[Hidden]

Hi Sharon and thanks so much for the lovely feedback! Sorry I didn't get a chance to say goodbye, but hopefully I will see you at the London Support Group on the 15th of May.

I'm just about to post something here on the forum.

All the best!

jean