AWOL, update as to why

[LupusKaren]

My apologies to everyone for not being around very much atm, but am really very unwell, and have been since last June, and having PE'S in December, and a whole myriad of other worrying symptoms, which to be blunt have not been taken seriously by doctors (GP the exception, in fact he is my hero), I found myself not only bedridden for 3 weeks, but housebound, with breathing problems, visual disturbances, coughing up blood, skin lesions, heavy blood in urine, flank pain, and unrelenting back and hip pain, suspicious lumps in lower mouth mucosa, which dentist has referred me to Max Fax and Dentist for, she did not know what they were.

I had an ENT appt a month ago, the 3rd attempt to get them to take me seriously, only this time I went armed with photographic evidence of what was coming out my nose, blood clots and foul crusting, and the fact my nose was swollen and closed up, photos of my rashes, and swelling in lower limbs.

Wonderful consultant this time, repeated the Nasendoscopy and could only view one side, heavy crusting, lots of blood, sinuses clear. He had my hearing tested, I failed that on my right ear. I am since that appt totally deaf in my right ear now. MRI pending of head to include ear structures.

He suggested that I may have some sort of Vasculitis (GPA) and sent me off for a ANCA blood test, which was negative, but thanks to Vasculitis UK I understand you can still have Vasculitis, and again thanks to Vasculitis UK for a long chat with their chairman, he gave me some solid advice, that at the very least I should be seen by someone who specialises in Vasculitis to rule this out, especially given my already known AI conditions, one of which is IGA Nephropathy of the kidney.

Back to my GP yesterday as I am getting worse, and now have in place an appt with Vasculitis Clinic in June.

I am with my Lupus clinic in a few days, and my husband is coming this time, as we are determined that we need to get some grown up thinking now, some dots joined together if possible, and acknowledgement that something is going on, regardless of blood test results looking reasonable. I am not living, existing right now.

OK that is where I am at, I will try to pop on when I have spare spoons. Love to you all.

[panda2]

That is an awful lot, LKaren... Thank you for taking the energy, of what little you have, to share with us what you are going through. It has been such a long battle with little progression for you of late and it must seem so discouraging to be in this position. What a relief to read you had a good/wonderful(!) consultant this time, followed up by GP with referral to Vasculitis specialist and the back up of a bright and grown up husband for next appt. (I smiled at your grown-up reference--definitely understand!).

Spoon well. And take special care.

Panda x

[LupusKaren in reply to panda2]

Panda, thank you. It has been a horrible few months, but with the support of my GP, who is fighting so hard for me, really going above and beyond, I have to keep battling to get answers, and definitely not helped by my established team being less than helpful, who frankly should know better. The camera never lies, so top tip peeps, take photographs of rashes, swellings, alien substances that you have from whatever orifice, don't be shy, not like you have to face these people regularly, call it your photo diary on your phone. I wish you could have seen my ENT'S face when he saw the photo pic of contents of my nose explosion, he shot back in his chair saying good golly grief, that will stay with me forever, priceless.

Seriously, your one picture could make all the difference.

[panda2 in reply to LupusKaren]

Too right! And you are excellent proof that the gorier the better! : ) Weird, isn't it, how we're inwardly pleased by a shocked/horrified reaction. They should know better, you're right, but when they don't sometimes we just need to remind them what it's really like. : )

P x

[Hidden]

Ditto to what you’ve just said to me LK - no advice but total empathy and sympathy and masses of (((((((((((())))))))))))) X

[KellyInTexas]

Hey Karen- I’m sorry to hear this news...

Ive joined up here as well. I messaged Paul ( admin) first and asked permission as I only have one ANA positive and no double stranded DNA so my diagnosis is , low Lupus , or mild lupus but , as you know the very severe APS, on the lupus spectrum.

Karen, I am newly diagnosed with likely Vasculitis also. But negative ANCA. We will have to learn from each other. My heme diagnosed me quickly ( small vessel) due to purple dots and swelling veins but I haven’t had my Rheumatoligist do a proper evaluation yet. It may not be.

[LupusKaren]

Hi Kelly and welcome. I am sorry that you too may be dealing with Vasculitis, am very happy to share my diagnostic findings with you, privately if you prefer. Wishing you all the very best.

[milkwoman]

I’m so sorry to hear you have had more than your share of a rough time. How you have the strength to post an update is nothing short of miraculous.

I am sending you gentle hugs and a purseload of hope that you find some answers and some relief.

I, too, feel that I’m merely existing instead of living these days and it is simply exhausting. We all need an influx of miracle physicians who listen with compassion, act quickly, and treat us all as if we were their beloved family members!

[LupusKaren]

My lung function test has come back as showing obstructive element. GP advised to trial me on Salbutamol. Fine, but sadly it exacerbated my breathing problems, and triggered what I now know was a thunderclap headache. As a sufferer anyway of cluster headaches this was a new experience to me, and not one I wish to repeat. The diagnostic journey continues, and I will keep rocking up to the hellish amount of appts before different specialities, until I find someone who can join some dots!