any help would be kindly appreciated x

[miiiy]

hiya! okay so this is like a little update since my last post, honestly thank you so much for the responses, you guys are all so clever and helpful!

i made a google photos folder for the pictures since i couldn’t figure out how to add more than one to this post!

*photos.app.goo.gl/t4w33bBKz... *

anyways, since then my ANA test again came back negative, yet my aPTT still prolonged (and has been for at least 3 years now, i think it was about 55?)

yet recently i’ve been having more weird symptoms like red and white patches appearing on my knees which aren’t swollen yet hurt when i bend them, and this morning a almost burn like mark on my tongue, yet i haven’t burnt it at all!

i’m also wondering if i have a valid reason to be worried/ self-isolating due to COVID-19, since i’m still not diagnosed with anything (i have a rheumatologist appointment in 6 weeks yet likely it’ll be delayed) am i just being silly?

i just want a diagnosis of some sort yet everything keeps coming back negative whilst i keep having all these horrible symptoms. i just want to know what it is at this point and not feel like i’m crazy and wasting everyone’s time :c x

is there anything else it could be other than lupus? my doctor said celiac disease could be a possibility too?

list of my symptoms (i’ve been trying to keep a little note of them, ill add some pictures below too)

*prolonged aPTT

*impetigo

*Livedo reticularis

*cold shivers, especially at night

*poor immune system

*flu symptoms

*recurrent unexplained uti’s

*weakness/ fatigue

*recurrent mouth ulcers for the last 2 years

*pelvic pain + numbness

*tingling + numbness

*anxiety

*red and white mark on legs

*red patch on tongue

*incontinence

thank you x

[tree_shadow]

My understanding is it could be anything that effects your immune system.

Based on that, again my personal impression only, is that therefore Lupus is notoriously difficult to diagnose for that reason, as it could actually be so many other things.

It may be worthwhile to check your thyroid function if you haven't done that. That could be causing some of the symptoms. At least it did for me, and was missed by the doctors for a few months whilst they were trying to manage my ITP. And also when I was initially diagnosed for ITP the ANA tests did not indicate Lupus. Which they did though twenty years later, when I was eventually diagnosed with SLE.

[miiiy in reply to tree_shadow]

they’ve done lots of full blood count blood test and all my levels of everything, blood cells, vitamins, platelets etc. were normal, i think my gp said they tested for all the antibodies and they all came back negative x

[whisperit]

If you ask Foggyme , she'll suggest it might be worth looking into atypical B12 deficiency

She's not often wrong, either x

[miiiy in reply to whisperit]

they thought that too so check that too and found my levels of b12 were normal :c

[whisperit in reply to miiiy]

I guessed this might be the case. The reason I mentioned this is because some people are actually B12 deficient despite having normal bloods. I managed to pursuade my GP to give me a "therapeutic trial" of B12 injections despite normal results on the basis of the guidance suplied by Foggyme . After all, it's a treatment with few/no significant risks, and I was desperate (it didnt help, but I'm glad I was able to rule it out) x

[miiiy in reply to whisperit]

sorry i forgot to mention! they gave me a shot of vitamin b12 a few months ago to see if it would help with my mouth ulcers yet it didnt unfornatley!

[whisperit in reply to miiiy]

ah, fair enough. Sorry I cant think of anything brilliant. Just the obvious - keep a symptom diary; don't give up; keep in touch with support groups like this - even if they dont come up with anything concrete, it can be very helpful to chat to people who share a story of long term, mystery illnesses. x