Just got back from a hospital appointment, and very unhappy and frustrated!

Hey guys,

Just thought id reach out for some advice as to where to go from here. Im a 22 year old female and im a dancer. Il cover some background:

Had symptoms since i was 13 (now 22). Symptoms consist of: Extreme fatigue, Mouth ulcers, Joint pain and joint swelling, Raynaurds, Rashes on body, Change in skin pigmentation/rash on face (across bridge of nose and cheeks), Bowel and bladder issues, Gastro issues (stomach ache ect), Chronic migraines and headaches. All these symptoms also effect my cognitive well being.

I have been to the Rhume clinic at my local hospital around 6/7 times now. On the first instance i was told they were 80% sure it was Bechets and started me on cholchine straight away, which doesnt work for any of my symptoms. As time went on and they did more blood tests which were coming back as normal it was clear i would have trouble getting any answers. I had taken images of my swollen joints and ulcers ect so they could see what it was like when i was having a bad day however i always seemed to be questioned about the photo, as it wasnt clear my joints were badly swollen or red in colour ect on these pics.

I have now just come back from the hospital with the DR putting my joint pain down to "wear and tear" or "mechanical joint pain" as i have no inflammation markers. Which i think is beyond a joke as i deal with painful and swollen joints over 50% of my life! being told it is down to dancing when im currently now not dancing due to this issue i feel is stupid. Im only 22, and havent danced properly in the last two years. I wouldnt expect a 22 year old to have "bad joints" due to dancing at such a young age.

I questioned him about all my other symptoms and he admitted i do have the symptoms of many different auto - immune conditions however because my blood work doesnt show anything i cannot be diagnosed with a condition nor can they put me on any other medication. However in the same breath told me the main thing here is to manage my symptoms, which they arnt doing as my current medication doesnt touch me?! :(

I was left with a referral to a physio ( which i find pointless as iv seen many physios over my life who havent really helped me) and also a referral to a podiatrist as i have "flat feet".

As you can tell at this point i feel completely defeated and have no idea where to go next. I have had my life on hold for two years and i cannot go on with being tired and in pain every day watching my life go by. I dont know if i posted on here for a mere rant (lol) or for advice. But anyone's input would be greatly appreciated as i dont believe any of this is due to mechanical issues and feel my symptoms also say the same.

thankyou for reading,

Hugs. Lexx xx

12 Replies

  • Hi Lexx,

    Sorry to hear about your disappointing appt. Your Rheumy doesn't sound knowledgable about Behcets as many patients have " normal " bloods and never mount an inflamatory response ( raised ESR and CRP ).

    Behcets is a clinical diagnosis based on signs and symptoms and ruling out other possibilities. It's also very rare which means that there are relatively few Consultants with the experience to make the diagnosis.

    If you stay in England then you need to ask your GP to refer you to one of the Behcets Centres of Excellence ( Liverpool, Birmingham and London ). They are nationally funded and don't cost your GP anything to refer you. Here are the details.


    If you are in Scotland, Wales or Northern Ireland it can be a bit more complex but if you tell me your location I can point you in the direction of a Consultant with Behcets experience.

    The most important thing is don't lose hope. There is no point wasting energy trying to change a Consultants mind. Move on and get that second opinion.

  • Don't feel depleted I did too at one point done something stupid but ambulance lady saved my life it's late just now I will mail you my meds tomorrow to say to your doc to see if they can help just rmbr your not alone

    Yours Donald

  • I think Keyes is absolutely right so I won't even bother repeating what she said.

    I will however caution you not to 'wed' yourself to the thought that you have Behcets as it may transpire that you have something just as difficult to cope with but with a different name.

    A lady I often meet at my Rheumy's surgery was told she had Behcets yet three years later, the diagnosis was changed to Fibro/M.E. with RA markers - don't ask - so all her meds were changed overnight. Like you, the meds she had been taking were not working but she's now feeling much better although she's still being monitored.

    Our bodies are such strange, unique and wonderful things that even the scientists and doctors sometimes get confused.

    Don't give up, keep searching. ensure you rule out any vitamin or mineral deficiencies (which is one of the things they claimed caused the mouth ulcers with my Rheumy friend) and definitely get some second opinions.

  • It took nearly 15 years for me to get diagnosed. Behcets had been mentioned before but I, like you tested negative. It is not a straight forward thing to diagnose as you will have found. My luck changed 6 months ago - you don't say where in the country you are - but my GP's and consultants been fantastic. I was put on steroids to control the symptoms and at the same time prescribed Azathiaprin, which is an immunosuppressant. Migraines stopped immediately. Got inflammation of eyes, lost sight in one which helped reach the conclusion of Behcets. Would be great if you could nip this in the bud. Ask if this treatment would be of help to you. Don't be fobbed off though. Good luck.

  • I had exactly the same experience as you even down to the flat feet :)) one rhuemy told me that many of his colleagues would diagnose me but he was more of a sit on the fence kind of guy !!!!!!!

    As I do have APS markers I did some research through these forums and identified a new Rhuemy with an interest in APS got a referral from my GP for a second opinion and was almost immediately diagnosed with relapsing polychondritis and then later Behcets.

    Now I'm under the Birmingham centre of excellence, it is a brilliant service so if you can get a referral there I recommend it. you see three or four behcets specialists in one day so if you haven't got behcets but another autoimmune disease they will quickly identify it.

    Good luck, it's rarely a quick or simple journey but you will get there in the end.

  • Hi Lexx,

    This is actually the first time I've written on here but I thought for once I might actually be helpful! I had a very similar experience to you as well. I'm currently 22 and until recently my Rheumy claimed I had Psoriatic Arthritis (despite me or no-one in my family having Psoriasis). I tried for about a year to get a referral from several Rheumys and GPs, but my Rheumy thought I was exaggerating my symptoms and GPs had no idea what Behcet's was so wouldn't refer me!

    I decided to email the Birmingham Centre of Excellence myself.. I emailed them all of my symptoms (which I actually have less than you - mine's mostly fatigue, join pain (16 affected joints) and mouth/genital ulcers), and how frustrated I was that no-one would listen to me. They said that it wasn't clear if I had Behcet's without a proper assessment but I needed to be seen and to show this email to my GP that I must have a referral.

    It turns out that I probably do have Behcet's (just waiting on the results of an x-ray/MRI to rule out Ankylosing Spondylitis!). Since, my Rheumy has phoned me to apologise for not listening to me and not taking me seriously because I'm so young.

    I suggest emailing the Centre of Excellence yourself. Even if you don't have Behcet's they may be able to give you a more concrete idea on what you do have.

    Good Luck! :)

    Dayzi x

  • Hi Dayzi,

    I actually have a Behcets/ Ankylosing spondylitis crossover. The 2 conditions share a number of features, are associated with the HLA gene ( B27 for AS and B51 for Behcets ) and research is ongoing looking at the ERAP 1 gene in both. They both respond to anti TNF's ( I am on Infliximab which helps ).

    Sometimes we don't fit neatly into 1 box. I am glad to hear you are being taken seriously now.

  • Hey!

    Thanks for the reply. Its nice to see someone young with the same issues as myself as sometimes i feel like a crazy person who makes these symptoms up and has the body of a 80 year old :/ haha.

    im definitely going to email the centre of excellence and see what they say as right now i have nothing to loose! My mother also has bechets and iv suffered for many years with similar symptoms however we dont think it is bechets, we just now its some form of auto immune condition from my symptoms and knowledge of the conditions. On one of my letters my rhumey sent my doctor (local GP) one of my symptoms listed was "vasculitis" which of course bechets falls under the umbrella. So im very confused as to why im not seeing a physio and apparently have flat feet if i have vasulitis :/ lol

    But thanks for the advice and please keep me updated on your journey when you get seen at clinic!


    Lexx xx

  • So shocking...we get this all the time. Don't understand the general lack of knowledge amongst healthcare professionals. Took me into my 40's to be diagnosed! Get another referral and as someone said earlier, maybe e mail the cofe in Birmingham. Rubbish treatment you've had!!

  • Thankyou everybody for the advice and personal stories! its much appreciated and lifts my spirits to keep on fighting.

    Im going to take everyones advice and email the centres of excellence as a starting point. Iv never initally thought it was bechets i just knew it was something. Being a dancer im very in tune with my body and right now i know this pain isnt from "wear and tear", otherwise my joints wouldnt hurt at random times when im not doing anything! However again thankyou for the advice and i shall keep you posted.

    Would also be good to know what other peoples major symptoms are?


    Lots of hugs. Lexx xx

  • I am so sorry. My lid had begets since probably before 14 but cml leukemia got in the way git that cured he was still sick they thought he was faking or crazy and I was definitely crazy until he was diagnosed at 17 by rhuemy he saw by accident. We r in the United states. I didn't get us an apology from children's hospital in Alabama but u did get it in the chart that he wasn't crazy. He is now 24. The thing is since my kid had cancer almost all the mess he can't take and the others he can't tolerate. Even with great pain mess his quality of life has been shit since 12. What I don't understand us how all of u young people deal with the doctors pharmacies insurance and daily life like cooking washing clothes with out help of your mama or somebody. I no my son is not takinn advantage of me. He can't even walk his dog unless under dire circumstances. I don't no if u guys hear it enough or at all and take this in the best way possible YOU GUYS AMAZE ME WITH KEEPING ON KEEPING ON. I moved wrong and hurt my back temporarily had to get ambulance cause I couldn't drive. Only enough pain meds given to get me thru the mri.(the only reason I didn't fuss is cause I had been taking pain meds for it before the Emergency room and they didn't work anyway) Honestly I couldnt move without severe pain and after FOUR days I started thinking what was I gonna do as I wasn't getting any better. I got better 2 days later. But in that time there was no cooking washing showering going to work etc. I am fine and my son thanks me a lot but I wonder how u get by thanks

  • Hi. Any rheumatologist worth their weight knows that behcets is a 'diagnosis of exclusion' meaning you do the blood test to rule out the other inflammatory conditions and then diagnose behcets. Word of caution...having a diagnosis doesn't necessarily help and (as in my case) can be hindrance as it put my life insurance up hugely!! Look at your diet...I cut out diary, sugar and wheat for 6 weeks and lived on the 'anti-inflammatory diet' helped by recipes from Dr Axe. Then reintroduced stuff to see what flares things up. Can't eat tomatoes at all. Try a different brand of colchicine.

    Good luck and hope this helps.

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