Symptoms

[Natz36]

Hi there

What are the symptoms that you have please ?

I am currently waiting to see a rheumatologist for suspected SLE but someone mentioned APS due to a balance problem for nearly two years now .

Just feel like no one is listening when I know something is wrong with me .

Thanks for any help

Natalie

[MaryF Administrator]

Hi, you GP can test you for Hughes Syndrome/APS, here are the three tests.

the anticardiolipin test

the lupus anticoagulant test

the anti-beta-2-glycoprotein 1 test

If you let us know which area you are in we can recommend some specialists for you, this will make things far easier for your GP, and rule it in or out in terms of whether you have Hughes Syndrome/APS or not. A lot of us also ask the GP to look at our levels of D, B12, Folate, Ferritin and a Thyroid profile, as it is not unusual to have low levels and things with these, best of luck. MaryF

[veganworld]

Hi

I agree with Mary that is good advice. I found the book Sticky Blood explained by Kaye Thackeray and available on Ebay really useful. The vast amount of different symptoms that everyone can get are complex and not everyone has the same symptoms but the book covers them all.

Good luck with your tests and keep us posted.

Kaz

[KellyInTexas Administrator]

Hello Natalie,

We are listening, and we will do our very best to help you, and we will not leave your side.

I was very lucky that my rheumatologist suspected APS , and balance problems were a clue. ( the blood can sludge before forming an actual “clot” and this sludging / micro clotting of the blood can impair flow in the tiny capillaries that feed , or innervate the nerves off the spine, creating balance issues. Can also cause dysautonomia. )

You could even possibly have tiny clots in the inner ear causing balance problems, vertigo.

If indeed, it is APS.

[Natz36 in reply to KellyInTexas]

Hello thanks so much

It’s so strange I had labryntihitis Years ago and was just given tablets

I’ve had an MRI it came back clear as requested by ENT as they couldn’t find anything but I have constant tinnitus and always feel off balance like I’m just not grounded if that makes sense.

When I itch I bruise lots of other things I have been going through but I just don’t know until I see a rheumatologist who knows when that will be now ☹️

Keep blaming myself for experiencing so many symptoms but no answers too

Thanks everyone I think I’ll be allowed to have some bloods done in the next two weeks once the doctors have started to relax the social distance thing a bit x