More disappointment

[Soph19]

I had my rheumatology appointment yesterday and I was quite disappointed with it! Although I was diagnosed privately I finally had an NHS appointment after 14weeks of waiting to try and get referred on to the Behcets Center of excellence but after a physical examination and asking my symptoms she explained she wasn't sure if this was behcets that is wrong with me. I have all the symptoms and positive HLAB51. Going forward for her help was re doing bloods and seeing her in 3 months because to her I was having a good day, I wasn't having a good day it's not something to can physically see on a person she has no idea how I feel day in day out. I got given a helpline number to call if I have any rashes or ulcers appear which is typical because an hour after I left I have a mouthful of ulcers. I don't feel taken seriously and don't feel like I was given a chance to tell her my experiences with this I don't know what to do I've waited ages for this appointment which was a complete waste of time.

[billi]

Hi Sophie most of us know how you feel. Many of us had waits of 10 to 12 years to get a diagnosis after seeing lots of specialists such as rheumatology, neurology and dermatology and more. Also to this day there still are no tests to prove Behcets it is a matter of 3 of 5 symptoms in a period of time. Best advice I can give you is starting from today is to keep a daily diary of your symptoms and feelings and take photos of any ulcers, rashes etc. Always take the diary and photos with every appointment to any doctors or consultants and if possible go with a family member or friend. I know it sounds harsh but they must be certain they give the correct diagnosis for any autoimmune disease as lots of them are so similar but involve different treatments and medicines. Try to stay calm as being anxious often brings on a flare. I know this isnt what you wanted to hear but I hope it helps you to see things in a better light. Take care and do let us know how get on.

Billi

[cherie1w74]

Hi Sophie. I can completely emphasise with you as I am also having trouble getting any form of medication despite a catalogue of photos and detailed descriptions and timeframes of my various symptoms. It seems if you have no visible symptoms during your appointment they are unwilling to offer any treatment. If they don't see it with their own eyes it doesn't exist. My specialist told me on my last visit that there is only so much they can cover in a 20 minute appointment and that the NHS are not in a position where they can prescribe without clinical evidence e.g. blood / biopsy results. It's true what they say...money talks. I'm seeing my gp next week to ask for a referral to a centre of excellence. I may as well wait on their waiting list as the specialist's list at the hospital as they say they will see you in 3 months but it's usually at least 7 months by the time my appointment comes through. You'd think being specialists they would understand how conditions like this affect not only our own day to day lives but that of our families who suffer along with us and end up costing the NHS thousands in the long term through stress related illnesses etc. I hope you get some answers soon and manage to get your symptoms relieved. Keep us posted. Good luck x

[mattrattenberry]

Hi , this happend to me! What I finally did was paid to go private ( £180) and got the doctor to refer me to the Birmingham centre of excellence. Not right but like you I was desperate and in agony both with my ulcers and my over all pain. I did all my own research I even called the support line at the centre ( on the website) which I found helpful to! I found that unless you speak to an actual specialist wether it's a nurse or doctor you will struggle it's not right but it's a fact! Good luck!!! 👍🏻

[muttiof3]

Boy can I relate. Of course, the appointment you have been so looking forward to is a complete disappointment....I could just keep going on but I'm not going to (Especially since some of my worst flare-ups showed up after the frustrating appointments I had with doctors...I especially don't like rheumatologists.) I was diagnosed fairly quickly, so quickly, sometimes I think they got it wrong but I know in my heart that I met all the primary and all but one of the secondary diagnostic criteria in their gigantic book. What I'm about to say isn't very optimistic but I'm going to say it anyway.

While waiting to get diagnosed, I think subconsciously we think things will get better once we know what we have. At least then we will have something concrete to deal with. Things don't really get better, the problems just end up being different and for me, my symptoms always seem to change. They don't, they're the same symptoms but they're just presenting differently. You still have to learn how to deal with all the stuff going on and figure out what you need to do to make yourself more comfortable and just as you figure it out, it changes. If you have Behcets, you're going to be dealing with a disease that very few people know anything about (I'm in the States and no one seems to know much about it and then they go to their gigantic book and I constantly hear, "Oh, Behcets doesn't do that." So it's just a new battle. I've had a doctors come straight out and say how much they dislike patients going to the internet to self-diagnose or how they dislike sites like this one. However, you know your symptoms. One of the reasons I keep coming back to this site is because I read about people who talk about the same symptoms I have (sometimes they say it better then me and I use it with my doctor) which in turn tells me I'm not off base in my thinking and maybe those symptoms are Behcets symptoms.

Maybe you're like me, maybe you're not, but with all the mixed information I got and all the weird symptoms and all the different doctors telling me different things, I was feeling like a hypochondriac. I'm telling you now (and once again to myself) you are not. Believe in your symptoms and stand by them. Figure out the best way to explain them to your doctor(s) and if they don't get it, try it from a different approach. Be proactive in your approach.

For myself, I know that stress brings on my worst flair-ups and after almost 17 years, I'm figuring out how to pace myself, slow myself down, how to not have ridiculously high expectations for the doctors I see, and maybe most importantly what to do when I have a flare up besides the drugs...because the drugs didn't prevent the flare.

Look at what you are eating and drinking, do some research. I started with inflammation. Put simply, Behcets is an inflammation of the small blood vessels. I figure my body is made up of a lot of small blood vessels so pretty much any symptom I have could be a symptom of Behcets or a result of having Behcets. I hate to say it because I hate exercise, but exercise really helps but not the exercise I did back when I was an athlete. For awhile there, a five minute walk was all I could do and not have a flair up. By the time I started seeing a team of doctors at OHSU (a pain management team) my exercise consisted of one mile in 21 minutes 3x/ week. If I felt great when my mile was over, I wasn't supposed to do more and if I felt like crap before I went, I was supposed to go and try anyway. After going 4 times, I was supposed to increase my distance by 1/10. It seemed ludicrous to me. A mile used to be my warm up before working out.

I guess all this is my long winded way of saying you are your best resource. Trust in yourself, keep track of what is happening with your body, don't put high expectations on your doctor's appointments because you will most likely be let down, be proactive and figure out what you need to do to make yourself more comfortable during a flair up. Learn how do deal with stress and rethink how you do things in your life (this has been hard for me) and get a counselor...one that you like. That may mean trying out a few but when you find one, they can be very helpful.

The diagnosis isn't the end, it's the beginning and you are your best advocate/resource.

[sam0511]

Am not an expert, but the fact you have had a positive blood test - which I haven't - I would say it was Behcets. Only advice I have is keep pushing, see if you can get seen sooner. Regarding ulcers, I cut out anything anti-inflammatory. Food, tablets creams/ointments etc - pineapple is a natural anti-inflammatory. After I stopped taking ibuprofen etc I didn't get anymore genital ulcers. Mouth ulcers always coincided with my period. I am following your post, so let us all know how you get on.

[Jhar16485 in reply to sam0511]

Sam0511 that's very interesting. I have been taking nsaids for 16 years daily. However after suffering stomach ulcers recentry I had to stop them . To my amazement my mouth ulcers are much less severe and I actually am free from mouth ulcers today. I have been plagued by them constantly since I was a teenager. My bd flare ups also coincided with my menstrual cycle. My rheumy said it was known that hormone fluctuations can cause bd flares. I was diagnosed in 2001 by a positive pathergy biopsy when I had private health care confirmed with an immunologist rheumatologist and dermatologist . Thank goodness for private healthcare as all my NHS doctors kept telling me it was stress lol. One bit of good news I'm now in menopause and hopefully when I come out of it my rheumy said some women see their bd symptoms greatly reduced! Bad news the fibromyalgia getting worse. Aaaarrgh

[sam0511 in reply to Jhar16485]

I tried the private route, but then I switched to NHS and glad I did. The consultant that first mentioned it is now my neurologist as they all seem to work in both. Stress triggers flares in me I must admit, but life is full of stress, good and bad, so impossible to avoid really! I can only speak from experience, but I avoid anything anti-inflammatory like the plague, including creams and foods! I too have been told that after the menopause things may improve or disappear. I take 150mg of Azathioprine daily. For me it has been a wonder drug. I lost the sight in one eye 18 months ago, caused by a retinal vein occlusion. It was only after this I had a definite diagnosis. Pathergy test proved negative. I have no inflammation in either eye now and consultants call me a success. Lol - not been called that before! If you don't mind me asking, what symptoms do you get with fibromyalgia? I prefer to ask such as yourself than search the internet - that way lies madness.

[esmy]

I am so sorry that you are having these frustrations

I would call that rheumatologist and ask to speak to them and say actually I would like you to see my mouth ulcers can I send you a photo please / come in ? - and say I am still feeling unwell

I would then write a letter to that rheumatologist anyway

Say I am still feeling very poorly I would like an appointment at one of the specialist centres please because this is effecting my quality of life

State clearly your symptoms when they started what they are and how long they last

State that you are hlb51 ( in itself not diagnostic but indicative )

State how this effecting the quality of your life and you feel that you need more help medication and support with your illness ..

Sad fact letters carry more weight

I would also say please make sure that you get your vision checked regularly - even at the hi street opthomolgist - explain you are having investigations for behcets if you have any vision changes at all -any please go straight to A and E

Good luck Sophie I hope that get to feel much better soon

[Soph19]

Thank you for all your replies they have made me feel so much better! I am going to call them now sooner rather than later before the ulcers clear up. I was feeling like a hyperchondriac but now by reading what you have all said is reassurance for me to just pick up the courage to sort it! Thanks again

[Lettie999]

What a rubbish experience. Did you see a regular rheumatologist or one from the centre of excellence ?. Don't forget you have every right to ask for a second opinion, go back to your GP and ask for a referral. If you live in the Midlands then the rheumatology team at City hospital is excellent, they overlap with the Birmingham Behcets centre of excellence so are experienced in spotting the signs of behcets.

Good luck.

[Dayzi]

Hi, I don't often comment on here but I thought my experiences may help. Like many others, I had a rhuemy that wouldn't listen to me (mostly because my symptoms are relatively mild - just bodily ulcerations and arthritis) so I decided to email the Birmingham Centre of Excellence about my symptoms. Next day I had a reply saying that I needed a referral to be assessed properly and to show their email to my GP - a week later I saw the GP and they gave me a referral there and then. When I saw the Behcets Drs they were brilliant - they said even if I didn't have Behcets they would take me into their care to treat my ulcers. Though I have since been diagnosed with Behcet's and my old Rheumy actually phoned me to apologise for not listening to a year of me asking for a referall.

I may have just been lucky - but it's definitely worth a try! I hope it works out for you