Blearyeyed in reply to gillianTS

That's interesting , you have been diagnosed with EDS as well.

I am still in that unconfirmed diagnosis flux for BD via the CoE , and they are now still hesitating over adding EDS as part of the mix for my other issues.

They have already said Fibro , and severe hypermobility with parathesia , along with pre diagnosed Trigeminal and Occipital Neuralgia , and I am now being seen by a Cardiologist to confirm POTS but the Rheumatologist was not ready to take the last step on EDS at the last appointment until those tests were done ( he is also under the illusion that you have to have hyper flexible skin, mines flexible but I can't wrap my cheeks round my face!! not just skin fragility and scarring so wants a Dermatologist to look at my scars) .

I am still not getting any useful treatment for anything , I have a small maintenance dose of Pred from the local Opthamologist because she diagnosed GCA at an eye emergency appointment ( despite my age ) but then the treatment was instantly reduced by the Rheumatologist until the EDS/ Behcets mix could be sorted. That was last June!!

I also have bouts of costochondritis , but I also get the swelling of one or both ears with hard spots that last upto a month and a hard and painful , and this also happens in my nose , and my eyelids swell, plus my joint pain/ inflammation is similar to reactive arthritis but comes in sero negative . I have mentioned the ear inflammation at two appointments already ( before I read this article ) but that seems to get lost in the mix as their only priority seems to be getting to see ulcer at the clinic ( even though they have seen enough photos of them and Lead said they are apthous stomatitis , the Gynaecologist also confirmed genital scarring , and I have had uvietis and episcleritis ) .

The possibility of adding RP into the already growing possibilities next week just doesn't seem practical right now , as they are already dithering on the other two diagnoses .

Yet also, it is frustrating that I feel I can't mention it , as there is a very big possibility that I could have this crossover , or just RP. Unfortunately , in my whole catalogue of photos , because they were so dismissive of the ears symptoms before , I haven't taken regular photos of my burning ears , because I was concentrating on trying to get the photos of spots ( I have at least one of each type now including PGs!) not realising how significant that ear shots could be.

I have , however , got many photos this time around of my Chilblains , and the necrosis I got on the tip of one toe this time around and they did a blood test that proves this is not cold / immunoglobulin related so again , it adds into that RP mix. I am also have confirmed pectus excavatum on x-rays.

I had an MRI scan which I was hoping would give some answers on all the other head , neck and shoulder related pain and swelling , but it turned out that when I got there they had only ordered a scan of my brain , not the whole area , so it came out normal

( Damn the EEG/ strobing I had the week before which seemed to clear my head pain and inflammation for the first time in three months!) It just seems so stupid to me that with all the varied symptoms in one place they didn't just spend that little extra bit of time and money to test it all at once , instead of just doing tests and tick off options one at a time, meanwhile leaving me in limbo and still in constant pain.

I really don't know what way to approach this next appointment .

As you are a little further down the diagnosis road than me ( crazy though that may be after more than 12 years!!) perhaps you might have some suggestions of how I should tackle it , or how I can make them speed up and listen.

Any helpful advice would be hugely appreciated .

Right off to the forward minded Opthamologist today , whom will sit , hear that we are still nowhere further , and tut alot at the idea that she too is being held in stasis in her treatment of the GCA related eye issues and the only good news is that at least my Dry Eye Syndrome has reduced so that I only have to use drops 6 times a day , and I don't have to squirt them so that I can literally peel my eyes open each morning at the moment.

The worst part , and you probably understand as you've been there , is that all their hesitation means you go to clinic appointments wishing you had the symptoms back. How crazy is it to live in a world were you hope your Uvietis has returned just to be able to tick the right box !!

Thanks hope to hear from you , my next BD appointment is Tuesday xx

gillianTS in reply to Blearyeyed

Don't hold back, what I do is take control of my appointments and when I go next, in June I will be taking a print out of RP simply because it could explain more of my other symptoms, I will suggest she reads it and considers my other underlying symptoms that have supposedly no link and yet I can see this cartilage link. When I mentioned my sinus, eye and head pressure it was discounted, yet I read others with the same, I was with ENT yesterday and after a camera he said he could not get into left sinus, right sinus full of clear mucus which is what I have been complaining about dripping down my nose and throat along with the pressure, anyway I am to try a spray up my nose for a month and uf still the same will carry out CT scan.

Do not think you are adding another condition to the mix all you need say is another Behcet's sufferer has exactly the same symptoms and this is being investigated as a link between Behcet's and EDS, it's not like you don't fit into both issues and would explain a lot.

You do not need to have stretchy skin to have EDS, the criteria for Joint Hypermobility Syndrome is now classified in the 13 separate areas of EDS you need to look at the criterias and print the whole lot off and give to your rheumatologist, he or she is living in a previous diagnosis life, all these categories were made and are recognised:

ehlers-danlos.com/eds-diagn...

New Diagnostic Critera 2017:

ehlers-danlos.com/eds-types/

Do not be afraid of speaking out or questioning what you are being told.

Let me know how you get on. Good luck with your appointment. We both share very very similar issues and I have fought for over 40 years for any diagnosis and any treatment and I still don't think I have finished with finding out how these things are all linked. I truly believe all of my BD symptoms are linked to bacterial infections for the first sepsis episode st 15-16.

Gillian x

Reply (0)Report