new here, feeling lost and just reaching out for some general advice and others stories X

[Lexah94]

Hey guys,

I'm new to this forum but have been visiting for a while just to read posts on other experiences. I'm a 22 year old female and have been dealing with my "problems" for around 6 years now. It took me around 2 years to be referred to a rheumatologist and I'm currently seen at a bechets clinic as I do have a lot of the symptoms.

My symptoms are:

Extreme fatigue

Ulcers (both mouth and I think genital)

Chronic migraines (seen by neurologist for this and is one of my diagnosis)

Artharalgia (also one of my diagnosis) - always having achey joints and swollen joints.

Abdominal pain and constipation

Pins and needles in limbs/limbs going dead

Pains in eyes and right temple (always in that area)

Red rashes ( been diagnosed with spontaneous urticaria also)

Change of colour in skin on face/sometimes can go a reddish colour but usually goes very pale ( over bridge of nose and on the tops of my cheeks)

Raynaurds has also been confirmed as a diagnosis.

Also under my chin gets extremely swollen like a moon face (this comes and goes)

I also have a vitamin D diffencey. Along with low folate and low vitamin B 12.

Vasculitis has also been confirmed as a diagnosis.

My mother also has bechets. When I first went to the clinic I was told they were 80% sure I had bechets. They have done numerous blood tests and nothing has shown. Think Iv now had every autoimmune test you could have and they've come back showing nothing. My symptoms are not getting any better and my consultant won't give me anything stronger then colchicine until she is 100% sure I have bechets however after 5 visits this year she then said she doesn't think I have bechets and basically doesn't know what's wrong. Because I'm a dancer and I danced since I was around 10 she tried to put my joint pain down to my dancing however I know that isn't the case. In the past two years Iv stopped dancing as my body just can't do it any more. I'm currently signed of sick from work as my tiredness and achey body makes it impossible to even complete daily tasks sometimes. My mum is adamant it's not bechets and is lupus however without any markers in my bloods the consultant won't listen.

I currently feel like I'm going to be discharged on my next visit and that no body wants to try and figure out what's going on with my body. I'm not really looking for answers just wondering what other people's experience was in getting diagnosed? How long did it take? Ect. I currently just want to be able to have a normal life and get myself back to uni

Thanks in advance for reading

Lexa X

[billi]

Hi so sorry for your pain and associated problems. I can only tell you my story. I have suffered with Behcets for over 30 years and it took 12 years to get a partial diagnosis . Initially this disease wasn't mentioned as nobody had ever heard of it. When I finally found a rheumatologist who knew of the disease and said I might have it, he also didn't know every symptom just really the ulcers, fatigue and neuro. I was with him for about 20 years and he was seeing more patients and did say that sme of the onset and later were ver probably Behcets related. You see here in the UK we are still on a learning curve with this disease. One piece of advice he gave me is so true and right....it doesn't matter which disease or what it's called as long as you are being helped as it is very, very important to get the correct diagnosis and therefore the correct meds and treatments etc.

I do hope this is making sense to you. More and more is being learned about these illnesses but it does take time and non of us have exactly the same pains, symptoms etc. I know I my case I am much better nowadays. I have accepted the way things are and found the meds for me.

I wish you well whatever the outcome.

Hugs billi

[Hidden]

Hi Lexa,

Part of the problem is a great many patients with Behcets never have any markers in their blood. It's a clinical diagnosis, there is no blood test that confirms or denies it.

You also say you have been diagnosed with Vasculitis, Behcets Syndrome is a form of Vasculitis ( there are 18 different variants ). What variant have you been diagnosed with and are you on any treatment for it?

When you say you attend a " Behcets Clinic " is it one of the Behcets Centres of Excellence?

I think if you are not happy with the care and explanation you have been given then the only thing to do is seek a second opinion.

[Lexah94 in reply to Hidden]

Hey,

Thanks for the reply. But yes I was under the impression there are no clinical blood markers for bechets. My consultants reason for not having me on any strong medication is that she doesn't want to prescribe me the wrong medication without evidence that I need it. Which I understand however the only reason she hasn't put me on anything but three tablets of colchicine a day is because she doesn't think my joints swell up. I have shown her and other consultants pictures of joints being swollen or red but that doesn't seem to be enough. Iv also had the pathargy test (the one they prick your skin 8 times) which was positive but that now seems to be disregarded.

I also haven't been told which form of vasculitis I have. I haven't really been told anything apart from she now isn't sure it is bechets but if it is the colchicine should work.... I'm seen at a general hospital at a singular bechets clinic that runs there. No it isn't one of the bechets centres of excellence.

I'm only not happy with my care as I feel I'm not being helped. I understand that getting the right diagnosis can take years, however in the mean time all I want is a way to stop my joint pains, my extreme tiredness, my headaches (I am on medication for these too) ect. and I feel like I'm not going to get much help right now because the consultant "isn't sure"

Lexa X

[Hidden in reply to Lexah94]

Hi Lexa,

Being told you have Vasculitis but not being told the variant ( there are 18 different types ) and not having any treatment really concerns me ( Vasculitis always needs treatment ).

What do you have to lose by seeking a second opinion? The Behcets Centres of Excellence are nationally funded ( for those in England ) and don't cost your GP anything for referral

behcets.nhs.uk

There is also an excellent Vasculitis Clinic at Addenbrookes Hospital in Cambridge headed by a Dr David Jayne who are very experienced in diagnosing and treating Behcets.

[Porky]

Hi

I really feel for you but it's very important that you take some control and ask if your consultant or GP will refer you to one of the nearest centre of excellence. A good consultant will not be offended by the request.

You need to know one way or the other and get on the right treatment pathway, as with most of us it may not solve everything but you will get excellent care and rapid access if it's needed.

[jaynee63]

Hi sorry to hear that you are suffering in this way. Both myself and my eldest daughter are sufferers and when my second daughter started to get ill it was presumed she was also a sufferer but actually she has a confirmed diagnosis of fibromyalgia. It may be worth exploring other possibilities and as suggested a centre of excellence would be a good move forward.

[2106]

Hi Lexa

I had my first flare when I was 14, that was 40 years ago. Nobody new what it was I had blood tests which showed nothing and this went on for years. I was only diagnosed about 6 years ago, doctors used to think that I was mad with some of the symptoms that I used to get, thought it was all in my mind, to me it certainly wasn't. I suffer from joint pain, ulcers genital and mouth, I also used to get ulcers on my body, get joint pain in my feet especially and hands, knees various other places. I think the worse thing is the tiredness which still effects me terribly, I know now when I have to stop otherwise I suffer for days afterwards. I don't take any medication at the minute, I try and go down a more natural route. I use a natural toothpaste, Aloe Vera Forever Bright which since I have been using this my mouth ulcers have almost gone, I also use Merc Sol 30c which I take if my mouth starts to get sore this is a homeopathy remedy which helps both mouth and genital ulcers. I take Manuka honey 10+ or 15+ I spoonful morning and night which helps my joint pain. If I have terrible foot pain I use tape which athletes use to support the joint, this works for me. Also I find that I can't eat or drink loads of things as this irritates my Behcet's, coffee, tea, the list goes on and on, you need to keep a record of what you eat and how you feel this really helps and you might see a pattern. I also never use soap or anything like that on my skin as this causes me to get ulcers which take months to heal. Coconut is really good for skin so I use this to shower etc. I also take a probiotic every morning, this didn't seem to make a difference straight away but after a couple of months I did feel better in myself. Also I had a vitamin D deficiency which did cause me a huge amount of bone pain now I take a supplement daily, but I can also tell when I have plenty might sound strange but my urine smells different I get itchy skin and when I perspire that spells different. It really is a case of getting to know your body. If you write everything down then you can show the doctors. My consultant said that very few people get a positive blood test result so you need to stick with it and don't let them push you around.

I really wish you well and hope that you get the help that you need, it won't be easy.

Hope some of this may help.

All the best

Biddy xx

[magirose]

I am constantly being told 'i am not sure of your diagnosis' i was diagnosed 12years ago. But I am on treatment anyway. I have regular treatment with interferon and mycophenolate. I think you should change consultants. Ask for a referral elsewhere. I wish I could endorse the centres of excellence but found them awful too. I go to Addenbrookes in Cambridge for my vasculitis care. They are so good there. Time for you to move on and fond another doctor. X

[distanttree]

Keep a food diary.

Read about alcaline food.

Remove caffien gluten dairy soy from the diet.

Keep notes on the effect the food has.

Alternate days for foods..this makes them eaisier to observe.

Two months of close observation will show you a lot.

Be resolute to study the effect that food has on your body.

It's a learning journey.

[JacqL]

Hello Lexa,

I'm just browsing here for the first time too and have come across your post.

I'm so sorry to hear you're not so good - your symptoms must be debilitating but please don't give up hope. I'm in my late 50's and have had symptoms of the disease since I was a year old (mouth ulcers) then genital ulcers in my teens and in my 20's the long list of associated symptoms developed and took hold. Doctors were at a loss until my 30's when a wonderful GP I had when I moved house suggested Behcets disease. I was then diagnosed (Queens Medical Centre) and offered various treaments.

At the same time (22 years ago) I decided to move to France for work where I subsequently went to bottom of the patient pile and on my own with my symptoms. My doctor here offered no specialist treament until my she decided earlier this year I should have a DNA test to confirm the presence of HLA B51 which is, I understand, a marker for Behcets. I know I have the problem which I've lived with all my life, but various doctors refused to accept it and treat it as such - I've only been treated for symptoms as they flare, which has not been entirely effective and has been very expensive! Finally, the problem has been recognised as a whole and I now see a Behcets specialist. Incidentally, she agrees with my suspicion that the sudden heart attack I had at 47 is Behcets related - something cardiologists refused to accept at the time. It's a breakthrough for me and I now no longer feel alone and isolated with my health problems.

I understand how you must be feeling but please don't give up. The Centres of Excellence are remarkable and I would love to have access to similar facilities here, which so far are not on offer, if they exist at all. I do hope you are referred, as once you have full support for what you're going through you're on the way to fighting the problem. Good luck and take care.

Jacqui x