Suffering

[Sammie_88]

Hi everyone,

This isn't my first time on this forum but I've not visited for sometime. I'm 28 years old and have been suffering for the past 10 years with my health without any diagnosis.

When I was about 17 I started to suffer frequently with tonsilitus. I would get bouts of it every few months. At about the same time I started to suffer with mouth ulcers. The mouth ulcers got worse and I assumed they were something to do with the tonsilitus. In the end I ended up having my tonsils out but the ulcers just got worse.

Then my health started to suffer. I would get colds, flu like illnesses, lots of viruses. I was having to take time off work all the time. Sometimes I couldn't even explain what was wrong with me, my body would just ache and I would feel exhausted.

I was back and fourth to my doctors for my mouth ulcers. I was referred to ENT who kept prescribing different steroid mouth washes and oitments for my mouth. When I have a bad flare up I can't talk or eat and have been signed off work for it.

About 4 years ago I started to get ulcers down below....I was mortified to say the least. Got them checked out they took swaps but weren't sure what they were so I was then referred to a dermatologist who took a biopsy of them. She told me they couldn't draw any conclusions so discharged me.

I'm now under a specialist at a dental hospital. She's put me on Colchicine 3 times a day, which is helping a bit with the mouth ulcers.

I got my eyes checked out a couple of years ago and everything seems to be ok thank goodness. I do however suffer terribly with abscesses. I've had 2 abscesses down below. The last one I had to have an operation to remove which was pretty horrific and left quite alot of scarring.

I am currently suffering with clusters of abscesses in my armpits which are really painful and have to keep dosed up on painkillers.

My last blood test results revealed low B12 so I may need to have monthly injections for this. Every blood test I've had for the past 6 years or more have showed elevated levels or ESR (inflammation in the body).

Earlier this year I had a colonoscopy and endoscopy to check for Crohn's or Celiac but no signs of that. Although I have got a hiatus hernia.

I'm at the end of my tether and still no diagnosis. Recently I've also noticed my knees getting painful and stiff.

I just wondered if my story resonates with anyone or if you guys could give me any advice your thoughts on whether or not this could infact be Behcets. I've brought it up with every doctor but they aren't sure.

Any feedback would be really helpful.

Thanks in advance.

Sam xxx

[TonyWT Partner]

Dear Sammie,

What you have described does seem to accord with what some people have experienced, who have been eventually diagnosed with Behçet’s, That said Behect's is a complex disease or syndrome (even those words within the medical fraternity cannot be agreed upon!). Symptoms vary considerably, not only between patients, but even within an individual and indeed to his or her reaction to specific drugs prescribed (one size doesn't fit all I'm afraid!).

So could I suggest that, if you are a resident of the UK, you ask your GP to have you referred to one of the three Behect's Centres of Excellence in England (London, Birmingham or Liverpool). The detail can be found on the front page of the Behect's Syndrome Society web site. behcets.org.uk

See the link at the bottom of each page about referral, for the three CoE, the link under the title of ‘Referral information’. There are three Behçet’s Support Coordinators (non-medical support only) with whom you could speak.

If you encounter some difficulty with referral please email [e-mail] In this case, we would need to know of the name and address etc of your GP.

I trust this will have been of some help.

T

[Sammie_88 in reply to TonyWT]

Hi Tony,

Thank you so much for your response. I'm due to go back to the doctors soon so I'll ask them about a referal. I'm not too far from Birmingham either.

I've been concerned that I have Behcets some years now after first reading about it in a magazine. However I was told that because I'm white caucasian it was very unlikely.

I'm exhausted now after suffering for years without knowing what is wrong with me. The constant fatigue and illness is so tiring, it's also hard for other people to undetstand and empathise when you're constantly ill.

Thanks again.

Sam x

[TonyWT Partner in reply to Sammie_88]

Sam, Apologies for not getting back sooner, been out of the country. Please let us know (at [e-mail]) that/when you have had success (or otherwise) - I merely suggest you be persistent (as I'm sure you will be as a consequence of what you have been through already, whatever the cause). I hope your are a member of the Society, as this will help us with 'data capture', and assist in 'quantifying' what is going on across the 'community'. T

[LindsG59]

This sounds very much like my experience where medical professionals did not link my symptoms up and reach a diagnosis. Go back to your Gp and give them a list of your symptoms and info on Behcets. Not all GPS are switched on to rare conditions. Mine certainly wasn't!! Good luck!

[amason931]

Sammie,

It took 4.5 years to get my diagnosis. I had chronic ulcers in my mouth this entire time. I also had a few ulcers below. I had ulcers in my colon as well. When I was having a really bad flare, I would have ulcers in all 3 locations as well as bad joint pain in my right wrist, hip, and knee. I continued to work, but was very miserable. If I took the steroid, Decadron, it would ease my symptoms but only temporarily and the steroid had negative side effects for me. I tried colchicine & doxycycline therapy but it did not ease any of my symptoms. I also used the Magic mouthwash, but would ease the pain for maybe 15 minutes & then be right back.

I finally went to a Rheumatologist and was diagnosed with Behçet's & she tried me on methotrexate...made my ulcers worse. She switched me to azathioprine.....I had a horrible reaction and ended up in the hospital. Finally, after jumping through hoops to get my insurance to approve, I am on Humira injections which I give myself every other week at home. I've been on these for 3 months and I have had no ulcers and only minimal joint pain in my wrist that comes and goes. This is the best I have felt in almost 5 years. I live in the US.

I do think you have Behçet's. I hope this info helps you and you get some relief soon!

[Sammie_88 in reply to amason931]

Hi Amason,

Thanks for your reply. Sounds like you've been through the mill. I've probably been suffering now for about 10 years. I find it really difficult explaining to people what's wrong with me as I don't really understand it myself. I just hope my gp will refer me.

Many thanks

Sam x