First Appointment NHS Behcets CoE, my tips!!

[Blearyeyed]

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.

I had

[lesleyg]

How frustrating! I’m in much the same position - had something come up in my eye it looked like a vein had been attacked by Behcets or three styes in one. I was so busy trying to deal with it I forgot to photograph it. Of course when seeing the doctor today it was dismissed because there was no photograph!

[Blearyeyed in reply to lesleyg]

To be honest, the reason I didn't get a picture of the small one or ones at that back was because I couldn't take them alone and my husband was so busy at work and had had to have all the responsibility at home while I had been flaring up I didn't feel happy having to ask him to do that too.

Plus, there is the embarrassment factor, you feel so useless and unattractive with all the symptoms you can't hide that encouraging someone you still want to find you attractive to take close up shots into your diseased mouth is really uncomfortable.

After the appointment however I know that I have to take photos of everything as soon as I can , and the progression of them no matter how I feel if I want to be believed or have the help.

What they don't seem to realise or care about is how this affects your family having to help you jump through hoops , and see you lesions , when they worry enough already.

[Minnskimoo in reply to Blearyeyed]

Hi Blearyeyed.

So sorry to hear this. How frustrating, disappointing and downright annoying. I understand exactly how you feel. It is typical after prodding and poking that you then have a flare up ulcer almost instantly. 'Sod's Law'

Bearing an ulcer filled mouth to my husband is something I try to avoid - it isn't the most pleasant of things to be doing for either party. And, I am sure that in spite of feeling unattractive you are most certainly not! I do totally understand why though.

It seems one can't win - I have taken many photographs at various stages and presented to the rheumatologist (he was interested and initially thought Lupus). The Oral consultant didn't even wish to look at the photographic evidence. He said that my medical records and many visits spoke volumes when putting together 'the bigger picture' and 'treating the body as a whole rather that looking at the itty, bitty individual symptoms'. The problem being, when visiting the GP, it is never my named one or, ever the same one. No continuity and no time to actually look at said 'the bigger picture' This, I believe, also contributes to the lengthy process of diagnosis. Lack of time. One GP put 'menopausal symptoms' on my records with regards to oral ulceration! Had a total hysterectomy 20 years ago...I ask you.

I am pleased to hear that you are still on the books and have not been written off just yet.

Sue. x x

[Blearyeyed in reply to Minnskimoo]

Exactly the same issue with the GP , kept putting dental absesses or infection , because they didn't want to deal with it, I would go to the dentist but then they would deal with a then infection like reaction caused by the initial ulcer.

I have also had multiple symptoms for the issues , the original letter it took them a month to send had none of my clinic or hospital admittances on and was all abbreviated.

I also got into the habit on the last two flares visiting them to go to the dentist before the GP to prove it wasn't dental and dental infection was still written on the notes!!

I will now have to get the fuller appt. Notes for those visits, I am assuming they don't want that as they should prove these conversations.

Unfortunately, I had had the foresight to ask my main dental help, an oral surgeon for a letter, but he based it on specialist clinic history visits and work that was done, and unfortunately, had not looked at my normal dental appointments or most recent emergencies which would include info on the ulcer origin of the facial swelling on at least two occasions.

I am beyond the embarrassment now, currently nursing second ulcer under my tongue in a photo accessible position and possibly two smaller ones growing by it, so hopefully that will be enough.

To be honest, I don't care if it is BD now, or what it is , my Vitamin D is also abnormal, I have had a right upper GI attack this weekend, constant headaches despite the increase in Garbapentin, eyes reacting and my skin makes a nice map of inflamed insect bites and inflamed ulcer like spots, the skin guy wasn't sure if the lesions were BD , maybe a test of the skin on one of the ones I had healing that day would have helped. I would just like someone to give me some anti inflammatory medication and useful steroid cream that would tide me over as the snail paced progress to diagnosis continues.

Next appt. in October, but I may just send the photos now in the hope that this is sorted out a little sooner, before another bout of the balance, confusion and slurred speech symptoms kick in.

Hope you are doing alot better and enjoying your school holidays

[Minnskimoo in reply to Blearyeyed]

It all sounds horrendous! This is the problem and it becomes tiresome, the ‘dental abscesses’, perhaps ‘stress’ maybe ‘your age’ and so it goes. No one looking at that ‘bigger picture.’

I agree, who cares about a title when suffering? Surely to goodness someone can prescribe something to help with said inflammation and skin issues? The dermatologist prescribed Elecon cream for the horrible bite-like spots - having had the rash/spots for many months. It did a really good job of clearing them up. Purple scars left behind however. I would definitely send the photographs in now. Still another eight weeks plus to go until October-can seem forever when struggling.

My oral and genital ulcers have gone due to Prednisolone. That said, it has been suggested that I taper off to see if they return. And back to the rheumatologist, as It is now thought there may be some other form of auto immunity -strangely enough related issues with balance, slurred speech, extreme fatigue, breathing and gastric related problems. MRI scan required, bloods, chest X-Ray. Today, I have been prescribed Adcal for low Vitamin D and calcium. The GP believes this to be related to steroid usage. Who knows? I was Vit D deficient prior to taking the steroids.

I do hope you manage to be prescribed something before October, it is ridiculous.

Sue.💐

[Blearyeyed in reply to Minnskimoo]

Did the dermo say you insect bite like rash spots/ ulcers were BD?

The specialist on the day said not sure, at least now I have actual photo of an inflamed insect bite, an inflamed skin spot like an insect bite next to it and the more ulcer like one in the same pictures it might help in his assessment.

I definitely need something other than standard hydrocortisone or fucidin cream, they only work on certain spots caught when the itch occurs deep in the skin and I put it on early, when they grow its pointless.

I am obviously not on steroids since the drops for the eyes back in April.

I have been told that Vitamin D deficiency can help in evidence of auto immune , inflammatory disorders because of its use in cell production being related to inflammation.

My Vitamin D issue must be from GI pancreas symptoms and malabsorption because as a nature artist and designer I spend alot of time outdoors, I take a Calcium / VitD supplement when stuck in or in flare ups because I am aware of the need for these and I make sure my diet is rich in them too.

My own research has shown that VitaminD and relation to Calcium means it can cause bone pain, muscle weakness , eye and neuro issues. But I also know that the joint stiffness, fatigue and head and neck pain and pressure related symptoms have happened for years, separate from this present long lasting pain, a symptom of my other issues not the cause.

I am also going to have my Calcium level checked before embarking on VitD supplements, as if it is normal or high, there could be some thyroid related issue which needs to be checked before just stuffing in more pills to address one issue that is only one of many new symptoms.

Feel free to drop me a line via email BD Buddy and we can catch up

[Minnskimoo in reply to Blearyeyed]

I had a skin biopsy and was told that it was perhaps ‘stasis dermatitis’ - this was during the period when Lupus/MCTD or Vasculitis was a possibility. The spots didn’t quite resemble the photos on Dr.Google. I do try to avoid ‘Googling’ but wasn’t totally convinced at the time. My legs did look like they had been bitten by bugs (my medical records stated : bitten by arthropod!) they turned Into deep craters.

I have read that Vitamin D deficiency can be due to malabsorption issues-which in turn can be connected to autoimmunity. Worth looking into as you so rightly say, being outdoors regularly should keep your Vit D levels up - during the summer months, at least! Will be interesting to hear if any other AI disorder is maybe lurking in the background. Do hope not, as one already has enough to contend with.

Will be in touch soon.

Sue.

[Blearyeyed in reply to Minnskimoo]

Yes, I do not rely on Googling images or general stuff.

It is based on knowing that I have not had an insect bite , during the living like John Travolta in " Boy in a Bubble" in my last flare and getting them coming up like red bumps first that then get a central head, and crater with an outer red halo and blustering appearance around, some then act like ulcers filling with fluid, breaking then going deeper .

Any research I do to try to help my symptoms involves reading official medical sites and clinical research ( unfunded by interested parties) the research done for medical investigation purposes only.

This has helped in giving me information only , often I could use it to tell friends etc. who have tried to diagnose with everything under the sun that my symptoms don't match what they are sure I must have. It also helps when understanding the "hospital speak" in your letters and to prevent confusion when they use clinical terms when talking about symptoms , so you know what is being talked about, and can agree or give them more helpful information on your circumstances that show it cannot be a thing being discussed ( years of experience , as you know, makes knowing some medical terms a necessity ).

Let me know how your tests go and did you get any Calcium levels or thyroid tests done?

[Minnskimoo in reply to Blearyeyed]

Yes, the amount of times friends have come up with a solution as to what I might possibly have - courtesy of Google.

How you describe the spots is exactly how mine evolved and progressed!

No thyroid tests, and unsure about calcium. I will be enquiring as to wether this was part of my blood work. Have an eye appointment too -5th Sept.

[Blearyeyed in reply to Minnskimoo]

How did you eye appointment go, and how are you doing?

[Minnskimoo in reply to Blearyeyed]

Hi Blearyeyed.

Huge apologies for the late reply.

In response to eye appointment - sadly, it was cancelled and I have only in the last two weeks seen the Ophthalmologist. He said eye involvement was 'minimal' but, my left eye, (which gives me the most trouble ) is the one that he has doubts about re- inflammation and therefore suggested an appointment for a Fluorescene Angiography procedure. I have to be truthful, this filled me with dread... the very thought of a luminescent dye being introduced to my hypersensitive body and how it might react led me to discuss with the rheumatologist the pros and cons of having that done. I asked if there was any chance he might be able to perform some other, less invasive test/tests , to help determine what is perhaps causing the problem with my left eye. So, I have an appointment booked for next Monday, at 8-45. The Angiogram has been put to one side for now. So, I shall see (pardon the lame pun) how that pans out next week.

I have also been referred to Gastroenterology and back to Dermatology as my digestive problems and now, new skin manifestations are not going anywhere, any time soon. I have also developed a strange indentation in my right cheek along with a feeling of skin tightening. All very odd and at times disconcerting. My face appears to have changed shape slightly. Hence the rheumatologists referral.

Sighing here.

Thank you for asking. x

How about your good self?

[Blearyeyed in reply to Minnskimoo]

Suffering on and counting the minutes to my next appointment.

I have a GP appointment tomorrow , as my Vitamin D levels have not improved despite the supplements , only my cholesterol shot up, this can be a side effect of the Vitamin D without calcium, but they jumped on the possibility that it could be parathyroid, and we must let them have their fun!!

What type of tests are they doing instead of the FA?

I understand that that test sounds scary with our issues and how we react to foreign bodies, but it may be the best test to see what is happening to your eye, and getting any vision stuff sorted as quickly as possible is key to preventing deterioration or vision loss.

Why not put a post up asking for advice from the site members about the test and if anyone has had it and if it caused bad side effects or not.

I asked a question about the flu jab recently and got lots of really helpful advice.

They may have had the test done a particular way or with a particular version of the dye that prevents or reduces a flare up, all that info will come in handy for you , and others reading the post , if you do elect to have it done. It may also put your mind at rest a bit.

Take care and I hope things go well