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