Frustrated

[ScottishGirlGla]

So now get a letter as follow up from Rheumatologist.

Bloods are mainly normal but now instead of anticardiolipin antibody I now have positive Lupus anticoagulant to go along with low vitamin D.

With reference to further tests - ENT for nasal ulcers have another at least 5 month wait, however I am thinking if don't have ulcers then (similarily to when leg rash wasn't there when I saw Dermatology) they won't do anything and then I will still be left in limbo.

Bit fed up and my headache today is awful!

[KayHimm]

It isn’t really instead of but in addition to with your blood tests. You should get clarification from your doctor. Both of these positive tests - the anti-cardiolipin and the LA - are tests for anti-phospholipids. These are auto-antibodies that occur on their own and in lupus.

I noticed you have a headache. There is increasing awareness of the neurological symptoms of these antibodies in the absence of a clotting episode. Do you have migraines? Any other neurological symptoms?

Really feel for you. Hope you get answers. Happy to help any way I can.

K

[ScottishGirlGla in reply to KayHimm]

Hi she says now -ve for anticardiolipin but +ve for lupus anticoagulant but i suppose since both canmake you clot more i should still be on my aspirin.

The headaches have been there since July 2015 since first episode of the vasculitic rash, see previous post for example of that. Had CT back in 2015 which was OK, none done since that. Seen neurologist since then but since not symptomatic of migraine or respondent to any of the gamut of drugs they gave me so they tagged it with non specific daily headache.

I normally have mild daily headache which i have learned to ignore but have escalations ( a flare) which can last few days or several weeks where right side of my head feels like it has a poker stuck in it. No other neuro symptoms though occasionally get blurred vision.

Thank you for your reply

[Salzer in reply to ScottishGirlGla]

I have this exact headache since early last year. Permanent low level one I've just got used to, with flares of horrible right sided headache that doesn't go away with any of the painkillers or anti inflammatory meds I've tried either. Rheumy is going to see if it eases with hydroxy and if not refer to neurology as migraine. But sounds like you didn't have much luck with neurology? Sorry can't suggest anything to help though sometimes a cold compress reduces the pain a bit for me - one of those freeze pack things. Can sympathise big time. It's horrible. S

[ScottishGirlGla in reply to Salzer]

I sometimes use a compress too. It's just so frustrating that they won't take all symptoms into consideration as a whole and want you to jump through so many hoops to get any resolution

[svfarmer]

Hi sorry your feeling frustrated and fed up I know how it feels - I get terrible nasal ulcers a lot of the time , I’ve tried creams that have been prescribed but it didn’t help at all - I know how painful they are and they last for weeks , am interested to know if you get some thing that works . Hope you get an appointment soon xx

[ScottishGirlGla in reply to svfarmer]

Yeah the current wait for ENT is June and my issue is what if they aren't there when appointment comes up. I take photos all the time as outside of nose gets red too but obviously can't take pic of what's happening inside

[Hidden]

I get nasal ulcers and also burst capillaries with spells of heavy nose bleeds and intense pain. Naseptin helps mine. I have Sjögren’s. Also get Vasculitis rashes on my legs sometimes. Do you take photos and show them to rheumatologist and dermatologist? I have found this has helped me a lot to get taken seriously.

I’m also in Scotland - other side from you though. 😊

[ScottishGirlGla in reply to Hidden]

From all episodes of vasculitis rash taken photos but when had have been abroad so obviously seeing someone when away costly. You can pretty much guarantee it will come up when I'm in Florida though. Going to try and get rheumatologist email so if it does can email rash progression