Lupus + Marfan + Ehlers-Danlos? Syndrome. My rheumy is convinced that this is what I'm suffering from (having tests etc).

[jayniey]

Does anyone know anything about this? She told me it's very rare (about 1 in 200,000). I've been stuck in front of a psych (without being asked or told). At least I know I'm sane, yet still I have other docs giving that look that tells you everything. Are any of the next 200,000 out there cos its very lonely being one and never meeting another one. Sorry for whinging I'll try and be more cheerful next time. Currently on hydroxy but it's not helping and I just feel so ill. Stay sane all.

[Purpletop]

Hi, I've heard of ED but haven't been diagnosed with it. I understand it is a rare disease, for other sufferers you might want to try the forums at rarediseases.org supported by NORD (National Organisation for Rare Disorders). It can't be easy for you, please don't worry about not being cheerful, it is understandable.

[jayniey in reply to Purpletop]

Tried them and no-one else seems to have the 3 that I have. I'll hang in there cos never know. Maybe sometime.

[Purpletop in reply to jayniey]

Then you will need to look at separate forums, one for each. They are useful, even if you won't find others having same interactions between the illnesses, at least you can get first hand feedback on what the others are doing in each of the three.

How are you doing, now that you have this diagnosis? Have you started any specific treatment yet? How are you feeling?

[jayniey in reply to Purpletop]

Haven't started any new treatment yet, they want me to have more bone density (done this morning) and 2 more mris. I have an appointment for ot after crimble for bone protection, an appointment with the eye consultant mid jan. Then 3 days after that I c the rheumy and then hopefully treatment will start. Understandably I feel like stink, like somethings eating me alive and god do a I hurt. Apart from that everythings wonderful. Even my husband and carer has got flu (and he had the jab). Life could be a dream der dum! Hope your well at the moment and happy crimble and healthy (ish as possible) new year.

[Purpletop in reply to jayniey]

Thank you and all the best to you too and lots of luck with the treatment.

[jamg3916]

I use twitter and someone I follow suffers with this...if you are on twitter you could try asking around...

[jamg3916]

PS have just put a tweet out to ask person to get in touch with me...cross your fingers

[jamg3916]

Hi janiey, Have just had a reply and they suggest HMSA Hypermobility Syndrome Association as a contact which has other EDS sufferers. Good luck

[jayniey in reply to jamg3916]

Thanks 4 that. I'm not on twitter so I really appreciate it. I'll take a look and c what comes up there. Got a load of bone density tests tomorrow, so I'm looking forward to that. Not. Everything hurts so much, it'll be a real effort. Desperate to feel a bit better, maybe next year. Stay well and chirpy all. Ciao 4 now.

[Melinda]

A blogger who writes for the website, BenefitScroungingScum, has Ethlers-Danlos syndrome. You may find it helpful.

[Sher78]

Hyroxy can take MONTHS 2 kick in my lovely, it works 4 some but not every1, I found it as useful as a chocolate teapot myself but I know others that swear by it. Good luck 2 u ;0)

[jayniey in reply to Sher78]

Been on hydroxy 4 over 5 years. It helped ny skin a bit but my eyes and the rest of me are a complete mess. My body seems to be eating me alive. They won't change it until I've had some more bone density tests (back and hip) and some more mris (head and spine). I think they want 2 make sure that my brain hasn' t gone awol.

[Sher78]

Well if it was going 2 help, it would've by now lol! It can cause problems with u're eyes & u should have u're eyes tested every 6 months while on it, didn't they tell u that? If it's affecting u're eyes u need 2 come off it :0/ I've been on hydroxy off & on, it doesn't do anything 4 me except bring a load of unwanted side effects with it, pretty much the same with everything they've put me on 4 the lupus etc so now I no longer take any treatment 4 lupus (although who knows, in the future I may change my mind) & just take a lovely concoction of pain meds . I'm happier doing this at the moment & it suits me better. Had checks 4 cerebral lupus myself back in Jan & turns out cns is kinda screwed up a bit now on have 2 take antipsychs as have acute psychosis caused by the lupus & APS but hey, I'm still breathing, even if I am a little unhinged at times ;0) Hope the teats r all clear, but then again on the other hand, it can b frustrating when u have no answers as 2 what's happening :0/ Double edged sword :0( Good luck my lovely x

[jayniey in reply to Sher78]

Know what you mean. At least I have a certificate to say I'm sane. The shrink was completely nuts but I talk sense at least. I used to be a wolf you know, but I'm all right noooooowwwww! Seriously though, anyone ever heard of your body firing off ultra-fine strings of something elasticky clear strong stuff then retracting it back (it happens constantly and from all over me. I feel like a reversing polarity magnet, almost like I've built up loads of static). I tingle all over and god it hurts so much. I need stronger painkillers. Am I actually imagining this part or is it real. A lot of the docs (not my rheumy) think I've gone bats because you can't c them and they can't be hacked to just check n c if they might exist. Hubby has felt them, says they feel like being under a cobweb but they reckon that becoz we r so in tune with each other, he's imagining it 2. I can't find reference to this on google and don't know where else to look. Anyway sweet, finished whinging, have the best crimble n new year that u can manage n most of all a painless one. X

[Sher78 in reply to jayniey]

What a complete & utter Aphid lol! I've had the tingly thing u describe, I know what u mean, it's difficult 2 explain 2 people exactly how it feels & I sometimes feel like my limbs etc is all being pulled in different directions, not ALL the time, but it happens nonetheless, but then again in all fairness I HAVE been diagnosed as being Psychotic so I think every1 just thinks I'm mental whatever now lol! Thanks 4 the Christmas wishes my sweet, & u have the best 1 u possible can x