Still pushing for help!

[johnmq357]

He Everyone, 

I thank you all very much for your many messages of support (one million times more than I have received anywhere!) I really do appreciate it.

As I have stated in my first post....I have been suffering multiple extremely painful large and small mouth ulcers every single day, since 5th February 2015. Also 3 months of constant blood and mucus in stool. Painful joints all over. Bouts of crusty scabs on the roots of my head hair. Puss filled spots on upper torso and front and back of neck. Stinging eyes that glue together at night, that I find really difficult to open and more recently, constant dull headache that over the counter tabs, don't seem to help.

I had a Colonoscopy last summer and all was clear. My GP has prescribed me with Betamethosone 0.5mcg soluble tabs on only about 4 x two weeks doses, in this very long period. He told me that I could not have them regularly, because they cause thrush! To be honest, I think I would prefer thrush to these horrific ulcers!

After reading the great help that I have received from this forum, I decided to book an appointment with my GP for 6pm, last evening.

GP had a student with him during the appointment.

This turned out to be the most heated appointment I have ever had with any GP!

I told him as always, that I still have the mouth ulcers 24/7. I showed him and the student the 6 mouth ulcers. The student was flabbergasted but GP showed no feelings and looked blank.

My specialist (gastroenterologist)  failed to turn up for my appointment on 11th April. I took time off work to travel to this and the hospital never bothered to contact me, even though they knew well in advance that he would not be attending.

I told GP that I had joined this forum and that I found everyone very helpful.

I told GP that specialist never turned up and asked him if he would refer me to a Rheumatologist. He agreed to do this.

I told him I was sick to the teeth of the constant pain I suffer every single day and that he has done next to nothing...to help me! I also said that if a Vet treated a dog like this he would definitely lose his licence and may even be sent to prison!

He didn't take this too well and said "John, I know absolutely nothing whatsoever about Behcet's Disease. 

I told him that people on the forum had stated that I should ask my GP for a referral to a Behcet's Centre of excellence, so I asked him to do this.

He said a massive very loud "NO". You have not been diagnosed with anything and I will not have you coming in here and going on about information you have picked up on an internet forum, that I have never heard of!!!! He then asked me.. "Is there a test for Behcet's, I said no, he said so how is it diagnosed then? I replied; with all of the information I have read this past year,  it seems to me that they have to rule everything else first. He said; then that's what you have to do".

I felt as though I was having a one sided conservation with a narrow minded wall!

I said to him; ''four weeks ago I needed you and you weren't available. I was given another GP in the practice, whom I have never met before. Unknown to me will I was waiting, she had spent some time reading my file, before she called me in. The very first thing that she said to me was; It is my belief that you have Behcet's.

My GP said; oh did she now! 

He gave me a prescription for Clenin Modulite100mcg inhaler and told me again that he wouldn't prescribe the Betamethasone, because of the thrush.

When I came home I went on the internet to see what Glenil is, and low and behold, up popped "can cause  thrush"!!!! Absolutely no difference to the Betamethasone that he would not give me!!!!

I also checked the internet for centre of excellence in Birmingham.

In:  "Referrals" it says they accept these from medical practitioners.

In: "Quick links" it says "We welcome patients with POSSIBLE or PROBABLE Behcet's syndrome at our centres of excellence".

This clearly states that I would be welcome at the centre and especially because of the lengthy, untreated, multiple symptoms, that I suffer!

I AM GOING TO PRINT THIS OFF AND TYPE A LETTER TO MY GP ASKING/DEMANDING HIM TO REVERSE HIS DECISION, NOT TO REFER ME!!

All I am trying to do is to find out what is and what is not wrong with me.

My GP knows absolutely nothing about Behcet's and seems to care even less about it. This does not give him the right to deny me the help that is clearly out there, and as he knows nothing about it...he should either be finding out about it, or putting me in touch with the people do know about it!!!!

Sorry for the long post and I hope it does not put any of you off reading it.

Will keep you posted.

Many thanks my friends

John

[Chinaboyce]

Hi John, 

Surely if your GP knows 'absolutely nothing whatsoever' about Behcets, he should do his job and research it. He should also refer you to a specialist who does, who can rule it out or confirm it, which he clearly cannot do.

It seems absurd to me that GPs are using the excuses of "I know nothing about Behcets" or "it's so rare that it's unlikely you have it" to just do nothing at all for people who are suffering. In these cases they should refer to the Centres of Excellence or a specialist rheumatologist at the very least who can actually make an informed diagnosis. 

Maybe make an appointment to see the doctor who said she thought you had Behcets as she's more likely to get you a referral without a massive argument. She's a medical practitioner so her referral would be valid. Arguing with your GP each time as well is going to be causing you so much stress that it's only going to be exacerbating your flare: he's doing way more harm than good.

If it helps, I'm currently living in China, a couple of hours travel from Shanghai. I'm 2 hours away from my excellent, western trained doctor and avoid the journey unless I really have to go. I'm currently searching for a Behcet's specialist in Shanghai: so far only specialists who aren't English speakers have come up and I'm really nervous. But I have managed to get an appointment with one for Monday so will see how it goes but I'm so worried he will be a traditional Chinese doctor who will tell me it's because I drink cold water instead of warm or something equally ridiculous (I've been told that by medically trained individuals here). Or that the interpreter will be useless. 

So, I'm back in the UK in the summer for a couple of months. I've been trying to get a referral from my GP to the Centre of Excellence in Liverpool as I spoke to them about the possibility of Behcets and they told me to get a referral from my GP to coincide for when I'm back in the summer. My GP doesn't want to give me a referral without seeing me first: catch 22. By the time he sees me and makes a referral, the appointment at the CoE will be too late and I'll be back in China. So I've emailed all the medical notes from the gyn and chest specialists I've seen here where I've been told I need a referral to a Behcets specialist and waiting to see if he will cave in and just make the damned referral for me.

The centres are happy to see people who have key symptoms of Behcets. They are the specialists who can either say yes, or no and it's likely to be this so here's another referral to someone else. That's what they are there for. They are NHS-provided. If it helps, I'm seething with anger on your behalf over your stupid, apathetic and ignorant doctor!! 

Best of luck: let us know how you get on. I sure as hell hope I can get a referral sorted too. 

C

[AmandaMoseley in reply to Chinaboyce]

If all else fails your dentist can refer you - that is how I got my daughter there!

[Jaxxi]

John, you could try ringing the Behçet's Centre of Excellence yourself. My GP was relectant to refer me but after speaking to me, the CoE contacted him to confirm that they do not need a diagnosis to see people, as one of their remits is to provide that diagnosis. The also reassured him that the referral would incur no charges to his practice.

The advice to switch to the GP who first mentioned Behçet's is worth taking: why stick with an insensitive doctor when you can see a switched-on one?

Don't forget to take pics of your ulcers and skin lesions.

You rheumatologist may well refer you to the CoE but a GP (or dentist) referral would be quicker.

Your symptoms sound a lot like mine. My head spots, skin spots, ulcers and joint pains have all been helped a lot by colchicine, which is the first drug on the Behçet's treatment ladder.

[Bethb]

Hi. Just a short message. Sorry that you are having such trouble.  I don't want to alarm you too much but you need to check that when you had your colonoscopy ...we're biopsies taken - 2 for each section of the lower gastric system is recommended.  This is because it is widely accepted that ulcers (behcets or crohns ) are often not visible on the surface. 

Your symptoms sound very similar to mine. I also had a lot of trouble being taken seriously by the GP....kept wanting to fob me off with antidepressants ! 

On my repeat colonoscopy, after I was told the first one was clear, it showed ulcers, biopsies revealed severe ulceration in the ileum.  

Also, I saw an out of hours GP...he was good. I think his notes embarrassed my usual GP and I didn't have any trouble with a 2nd referal to a Gastroenterologist for that repeat colonoscopy. 

If you do see an out of hours GP...mine was on a Saturday,  keep really calm , state the facts...get him/her on your side.

 Good luck xx 

[Dan_NY]

I think maybe an even easier solution would be for you to phone the doctor you saw, who said she thought you had Behcets and ask her for a referral letter. Of course if that is possible.  Remind her that she commented to you about potential Behcets and you think that makes sense.  Keep the other doctor out of your conversation, unless asked specifically.  I would not go see that GP again. Find another... Good luck.