So, my first appointment with the Liverpool CoE was a few weeks ago.
It was quite tiring and alittle stressful but most disappointing of all was that because I had no ulcers on the day, or photos of them they could not diagnose me as Behcets that day .
Apparently, it is an NHS criteria for receipt of diagnosis and the medication. I could have kicked myself as , although small , I had , had a perfectly formed ulcer , in a photographable position a month before but I hadn't snapped it because I thought it too small to count! ( the larger ones are always at the back top of my cheek and are impossible to snap without three assistants, a torch and hanging upside down!)
The irony was , that the small amount of checking in my mouth caused a reaction in my mouth 24 hours later, and an ulcer in 60!
The good news I guess is that I am still on the books to return and if armed with the right photos of ulcers on the day things can progress. So I am practicing my photo taking and making ready from now. Of course, the downside is , my medication hasn't really changed and I am just hoping that my present good patch will last to the next appointment so I do not have to go through another flare without a new treatment programme.
The consultants did suggest that I should get a new Rheumy referral and as soon as anything flared up I should ring and see them or the GP, I pointed out that doesn't really happen in North Wales, you could ring but even if you go to AandE you are unlikely to have tests done or a full check on the day by a specialist but be given an urgent appointment date instead , usually in months. They were really helpful though and said I could contact them in the meantime for help and advice.
So it's another waiting game, and I thought I would post the following tips for anyone going to a CoE or specialist to help speed up the diagnosis.
If you have an ulcer , photograph it, anywhere , use a torch for light as a flash obscures the picture, pull back the cheek using something soft to show it , someone else will have to snap it , you can also use a dental mirror if that helps.
I had a number of photographs of other things which were useful to the doctor's , so I say snap what you can when you see it, don't wait until tomorrow, as sometimes a bout of redness or swelling can come up in the night and have gone down by morning.
Skin lesions, try and photograph them as they start and the changes as they progress, this will help the skin specialist get a true idea of the type of skin issue it is.
Put photos in separate files, like skin, joints, ulcers, eyes, inflammation, circulation , on a tablet , then it is easier to go to the right pictures for the right doctor, and they are big enough for them to see properly
You cannot use a memory stick because foreign devices should not be plugged into hospital computers in case of viruses, ha, ha!!
I had difficulty getting great notes from my GP , so it is worth going early or you may be left with quite a useless summary of past appointments, if you want a whole record it can take 2 months, so when the appointment date comes, apply for it.
Access to Health, were really good at the hospital, if you put in a request for full records on hospital related stuff you can get it all in 28 days, including x-rays etc. I do not know if the name is the same for NHS in England, I just asked for records and the main reception found the right people for me.
When you have them, and if you are like me there may be alot, it is worth taking time to go through them and making easy to follow summary of your tests and results, what you have been checked for, number of hospital admissions and why, medications, recurrent issues on record and what you are being treated for apart from Behcets.
It is also worth having a list of GP visits, your most significant history and family history , have copies of them to give to the main consultant to add to your file , have a copy for yourself , and a summary of what you have had done under eyes, oral, gynae, rhemy and skin to show the consultant you see for each of these areas,.
It is alot easier than taking a huge file of stuff and you can refer to it when brain fog sets in. Use paper copies separated under category dividers for speed , only use the tablet for photos, you don't want to get lost or wound up trying to find all you want to show them , although the different appointments are quite long Inthe most part , the move between one and another can be quick.
Take a drink of water, a friend who doesn't mind silence, sunglasses ( I need to wear them anyway under flourescence) a mini fan,
You will see a nurse for standard health checks, have bloods at the end and a full eye exam, the oral was very quick and rudimentary, surprising considering ulcers are so important to diagnosis, I was expecting a dental chair and something to show the past scars but it was done sat on a hospital bed with a headlamp and spatula.
The appointment in total took about 5 hours , so be prepared for feeling rundown next day. I found it helpful to walk up and down a little rather than sit between doctors ( you know what those hospital chairs are like).
So, I hope this helps anyone with questions about how it works and if you want to know more about it feel free to ask.
The best tip though, photograph those ulcers!! And try and get as much rest as possible the day before, and be prepared that your symptoms may play up a bit afterwards because no matter how calm you are, the physical process of appointments do aggravate your symptoms as much as stress can.