Behcet's Syndrome Society
3,917 members3,321 posts

Wow this is a long journey

So I saw a Dr in uclh for hypermobility related issues and I come out with a possible bechets diagnosis.I'd never added the gentle ulcers into the equation but she asked if I had them,which I simple I get reffered locally for an mri and scan of knees.that was in may.I waited 10 weeks to see a rheumatology who recommended physio and a scan of my hands,no mri.they failed to send my letter and then lost the blood tests,which had been done in London anyway they won't refer me till they come back and it 3 weeks to receive the forms.when they do get the bloods they are not reffering me to Birmingham centre of excellence as recommended but a random immunologist.I'm feeling pretty lost right now.the symptoms have been going on nearly 5 years pain is severe and the symptoms are getting more frequent and severe.whenever I go to the gp they do nothing because I'm stuck in this diagnosis I havery ulcers,severy pain in hands,crippling costochondritis,heart palpitations all day long,chronic fatigue,and several other bizarre symptoms.I'm feeling very despondent about the situation and don't know how best to handle the situation.should I try to get re reffered?Birmingham have said they will see me from a gp refferal but my GPS treat me like a waste of space,half wit.I have 4 kids to look after too.any suggestions welcome

2 Replies

Don't give up hope- The immunologist could be just the right person! Behcet's is an autoimmune, auto-inflammatory disease causing inflammation of blood vessels (vasculitis). The clinical lead for London Centre of Excellence is an immunologist, medical Dr and dentist

1 like

I hope youre right.this is the nearest I've got in 5 years to an answer that fits all my symptoms.I'm tired of people who treat me as though I'm making it all up and want someone ,finally to treat me like my illness matters.because it does to me.


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