How can I move the Drs along?

[NoodleDoodle]

Hi everyone, I've been lurking on here for a while but I'm going to be brave and ask my own question, it's pretty long so sorry in advance.

I have been suffering with BD symptoms for years (mouth ulcers regularly since age 5/6 and majority of other symptoms developing since late teens and after the birth of my first child) but have only been seeing consultants for my problems for the past 7 months. I had been trying to get referrals from my GP for years but he wasn't interested as I'm sure most of you can relate to. I started by seeing a Dermatologist for my mouth and genital ulcers and skin lesions, she then referred me to an oral surgeon to have a biopsy of my mouth ulcers (they cut a whole ulcer off my tongue!!) She now wants a biopsy of my genital ulcers but trying to get an appointment before they disappear again is proving impossible and everything has come to a standstill. I really don't want this biopsy as the other one hurt like hell and having to repeatedly make appointments and worry non stop, only to have to cancel as the ulcers are gone, is driving me insane!!

The Dermatologist is the only person that believes I have BD, she mentioned it before I did, all other Drs completely dismiss the idea because it's 'so rare' and look at me like I've been Googling random tropical diseases or something whenever I mention it My other symptoms are getting worse, mainly joint problems at the moment. My hips, knees, ankles and wrists are bad but this last month my fingers have become very painful and stiff. Do I keep going back to my GP or back to my consultant? She keeps on about the other biopsy but trying to get one could take ages and I need help now!

I've had all the bloods for allergies and things but everything comes back clear. I'm currently on Diclofenac for hips and knee pain, I have mouthwash and steroid tabs for mouth ulcers and my GP prescribed Tramadol so that I could get some sleep when I have genital ulcers as the pain is so bad but I also sometimes use when my joint pain is bad. I'm only 26 but the last year has seen a dramatic increase in frequency and severity of my symptoms so I am starting to worry about how bad it's going to get. I have 3 children and feel like I can't do much with them at all. Pushing one of them in a swing left my wrists extremely painful for days. How can I move things along? I'm so fed up!

[Behcetbabe]

Hi,

I fully understand how you feel. Had BD since 1987 but wasn't diagnosed until 1999 after the birth of my second child. Kept been made to feel I was making it up! Although ulcers swelling joint pain etc.. Were all present.

First of all which BD Center of Excellence are you near?

Get your GP to refer you to your nearest one. You tell him you want to book and choose.

Or ask your dermatologist for a referral as she mentioned it to you before you did.

We all understand what you are going through with this terrible illness. You are not alone we are here for you

Also suggest to your GP that he prescribes you some instil gel for your ulcers and a steroid inhaler to spray on them. (Running water helps when you pass urine) and celery sooths mouth ulcers as does sugar cola the branded one!

Hope this helps! I am sure other members will help you too.

All the best you you and much understanding xx

[billi]

Hi so sorry for your pain and suffering without really knowing why . Sadly BD is a long journey but getting quicker for diagnosis. As the previous answer, it took me 12 years to get a diagnosis and I have been suffering for over 26 years. All you can do is push for your appointments, maybe take somebody with you to help your case. The bloods, biopsies etc are more to rule out illnesses than prove BD as usually everything comes back negative. I used to be glad I had the ulcers (as proof of something wrong) because the option was I was loosing my mind. Things have improved, meds treatments and timespan for diagnosis so be strong and stand up for yourself.....easier said than done, I know!!

Tip for your ulcers.....use a Clenil inhaler ( if in mouth DON'T swallow). A few puffs at least 3/4 times daily at onset and reducing with healing. Also many of us who cannot even drink water find coca cola soothing. I take it ou are in England the COE are in LONDON, BIRMINGHAM and LIVERPOOL where you should try to get a referral.

Hugs and Smiles

Billi

,

[xandii]

Hi Noodledoodle hun (love the name by the way !)

Come out ... come out .... where ever you are ??

I've seen you lurking around the forum...peeping around the corners of the pages and ducking back when you thought someone saw you. So glad you eventually bit the bullet and came out to talk to us. Was it anything to do with the trail of sweeties I left leading to the question page ? LOL.

I totally agree that the Cof E is the absolutely best place to go for your list of problems and they can get you to see all the relevant consultants all in one place at one time !

What is probably equally important to you hun, is that they WILL believe you and offer the emotional support you clearly need when the fan is turned on and you find yourself in front of the residue (if you get my drift lol)

As you will have come to realise sweetie, you are in the right place to get support. Never feel anything that is bothering you too trivial to talk to the forum about. Okay ? Ask questions and sound off when you need to..... it's how we all get through this day by day and we all care for each other.

Can I suggest that you start to log your symptoms in a diary and add photos of the symptoms as they appear. This is so useful to the meds when they come to look at the whole situation and although you try your best to be a budding David Bailey sometimes and need to do contortions to get them, the photos don't need to be absolutely perfect. I always take several snapshots of the general area and blow them up on my laptop using the photo facility so maybe try this ?

Details for the C of E's are found on the BSS pages and get either your GP or the Dermatologist to get you a referral asap. I would go for whichever one you think will get it for you quickest. Maybe even try phoning them directly yourself and see if they can offer any suggestions on how to speed things up for you. You need their help and overall monitoring of the BD so it is absolutely the right place to be. Okay ?

Please keep coming on and talking to us ..... it is so important for your own sanity to share the problems with like minded souls okay ?

Hope you get sorted out really soon hun, take care.

tootle pips xx

[MrsBeau]

Hi there Noodle,

Many people seem to have a tough time finding a diagnosis. I feel for you, as it sounds like there is no plan here and anyone in your position would be miserable.

I'm not sure how I can help but I would like to make 2 comments -

1. I wouldn't be happy about cutting whole ulcers out of my mouth without very strong justification - I'm not sure what your reason was when a small sample for biopsy is fine. I've read reports of doctors treating ulcers surgically by removing them - to my knowledge it hasn't stopped recurrence and just leaves the patient with scarring. God knows we don't need any more of that.

2. Personally, I'd stop any further invasive tests like biopsy until you've found some better care. There's a raft of less traumatic tests they have available to them via a blood sample and swabs to rule out other suspected conditions. I was told that a swab test for genital stuff is fine until they find something untoward; a biopsy *down there* should be a fully justified secondary test rather than a fishing trip because of the trauma to the patient.

Can I suggest you find a doctor you trust for a full discussion? They need to be clear on what other conditions need to be ruled out, then agree a complete test plan and timescale for ruling them out plus a route for you if your symptoms become uncontrolled/change while you are going through the process. This should help you feel a little less anxious until you reach diagnosis.

Beau.

[NoodleDoodle]

Thanks for the replies. The nearest Centre of Excellence to me is Liverpool, only an hour away. My GP is absolutely useless but I think I'm going to have to go armed with all of the information I can get my hands on and pray for the best. The Dr that referred me to the Dermatologist has retired which is a pain as she was quite helpful when I got to see her. I think I'm also going to have to put a stop to the next biopsy too, the worry and stress it's causing me is horrible, it makes me feel physically sick The Dermatologist sent me for tests for the HLA-B51 gene but I'm still waiting for the results, she is incredibly difficult to contact though so I shall mention the tests to my GP when asking for a referral, surely once he realises another Dr thinks it's Behcets he'll start to listen? Maybe that's just wishful thinking!

Vicki

[Hidden]

Hello Noodledoodle,

I would agree that a referral to the Centre of Excellence would be a great start. I will let Carol, who is the support worker at the Liverpool clinic, know about this and ask her to send you some info on the referral procedure. There is no reason at all, your GP can not/should not refer you to the centre.

Best of luck to you and I look forward to hearing how you get on.

jean

[NoodleDoodle]

Thank you londonsw, I have just seen the email. I just called the hospital to see what was happening with my results, they refused to tell me on the phone and said to contact my GP. I called the GP surgery and the results say I tested negative for HLA-B51 and they also said I missed an appointment so my referral to the Dermatologist has been cancelled!! I called and cancelled my last appointment and asked for a new one which they never made according to the appointment line! I'm so fed up with Drs!