Is it Behcets?

[Emwb]

I imagine lots of you like me have struggled to get a diagnosis, but I'm at the end of my tether! I've seen gastro and Max fax without joy, and I'm now so fed up of going to my GP I just can't face it. Behcets seems like the most likely condition I've been able to search (over years of trying) but my GP has never suggested making a rheumatology appt because I've never had a genital ulcer. I've had mouth ulcers for well over ten years, and non-stop for about 4 years. I was recently diagnosed with endometriosis too. I get a lot of gastro symptoms, joint pain and fatigue, all of which are getting worse. As it's invisible pain, you feel like a fraud without a diagnosis. I don't seem to get eye issues either, but I'm going to see an optician to check. I wondered if anyone else was like me and if I should push for seeing rheumatology?

[Dashy171019]

Hi, my husband struggled for a long time to get a diagnosis due to the lack of genital ulcers. I fought with GP's day in day out to help him as on 2 occasions his mouth ulcers had gone septic and he was on one occasion rushed to hospital with sepsis. In the end I contacted Aintree Hospital (other specialist centers in Birmingham and London) and kicked up a fuss until I managed to get them to get a referral sent from our GP. Once we attended Aintree he had the blood test to determine if he has the HLA-B51* gene, as he only tested positive for having half the gene they refused to officially diagnose him but began treatment for Crohn's as it is a similar disease and similar treatment. In February 2022 he then developed severe genital ulcers and we went back to Aintree. Despite not having the full gene for Behcets the officially diagnosed him with the condition and began him on different treatment.

It took a lot for us to get to the centre of excellence but we pushed and never took no for an answer. As Behcets is a rare condition our GP was not trained to spot it, we had to do a lot of our own research the prove his symptoms stacked up to get the final push for him to be seen at Aintree.

I really hope this helps. We are really struggling with this condition and affects both our daily lives in a way we never thought possible.

[Emwb in reply to Dashy171019]

Thanks so much for your reply and sharing your story. You're an amazing wife to fight on his behalf as I feel like giving up, I may ask my husband to shout on my behalf. I feel horrid, so not expecting a quick fix, but a label would certainly help others understand this invisible nightmare! Thanks again ❤️

[Sherlock11 in reply to Emwb]

I had been misdiagnosed for many years with Crohn's and I always wondered why I never responded to the medication. As years passed my symptoms changed and I developed new ones and one day I put all my symptoms in google and low and behold Behcet's came up. I suspected this but felt like everyone I can't have this it's too rare. I visited my Gp and discussed it, she referred me to Aintree CoE and I was diagnosed 9 months later. It took a while to find the correct medication but I am now much better. You must not to give up, if you go to the CoE and you haven't Behcet's then they may suggest another diagnosis but be sure they will not mind.

[Alfaroo]

All I can say is if your gut tells you something is wrong then fight your corner as no one else will. Push for referral but don't be disappointed if they tell you that there is nothing wrong.

My son who is now 13 has been unwell since he was 2. Always the same symptoms. Always the same pattern of presentation. We have been in and out of Hospital, we have seen different specialities, he has missed out on so much of his life and is often in pain or just feels 'unwell'. Test results are always normal but he certainly does not feel normal.

James has always presented with fevers, joint pain/stiffness, rashes, headaches, joint swelling and then develops the most horrendous mouth ulcers (ulcer doesn't really describe what happens in his mouth), these can take ages to heal and then scar. He will then be fatigued, have nausea and issues with his bowels.

Before he started secondary School I ended up taking him Privately to see a Rheumatologist in London, this was after we had been seen by an NHS Rheumatologist and told James had Chronic Fatigue Syndrome!

The Private chap, really old School, so worked off of presentation/symptoms not just test results felt that James had either Juvenile arthritis or Bechets and referred him to a Paediatric Rheumatologist at GOSH who we saw privately and James was diagnosed with Mucotaneous Bechets. He is negative to the Bechets gene and has never had genital ulcers.

He has recently had some Gastro investigation due to his nausea, reflux, constipation/diarrhoea & blood in his stools. All have come back negative but his symptoms are very real. We were told by Gastro that they doubt he has Bechets as he has never had genital ulcers.

He is currently on Azathioprine, this has helped his oral symptoms but not so much the Gut or fatigue. His School attendance for year 8 so far is 9.6%.

So definitely push for referral and keep pushing till you get answers. Ask for referral to a Bechets Centre. It's an awful illness which is obviously very misunderstood by many.