Guidance, anyone?

Hi, I'm new here and I hope I can get a little insight into what is going on with me, medically. I have a history of cyclic periods of profound illness, with symptoms such as arthralgia, low blood counts, frequent illnesses, dry eyes requiring lacrimal plugs, frequent dry mouth, facial rashes, etc. About two months ago, one of these "active periods" started again, with a mind numbing headache every single day, pins and needles in my fingers and legs, horrible pain in many different areas, and when I went to the emergency room it was determined that I had an enlarged spleen and every blood count was low, from wbc, rbc, and platelets. I had a wbc of around 3.3 for over a month, and in addition, my liver was in crisis, with my enzymes over ten times the higher end limit. The doctors got my enzymes to go down, through stopping a medication I was on for the headaches, but the spleen has remained enlarged, along with my portal vein being distended.

The doctor and I discussed what she thought was possible, such as lymphoma, leukemia, or an autoimmune disorder. I researched Lupus, and I have several of the criteria required for a diagnosis... However, when the ANA came back, it was VERY negative, I had .3 units. The criteria that I meet are: (Both current/this active period, and through the last couple of years) Extreme photosensitivity, (When I'm in the sun I flush almost immediately and I get a rash all over my trunk if it is exposed to sunlight. I frequently have a rash that goes over my cheeks, but rarely on my nose unless I'm in the sun. I have had several occurrences of almost a raccoon like rash around my eyes. I have a history of mouth ulcers and frequent small ulcers in my nose. However, they are somewhat painful so I'm not sure that they are the "required" lesions. I've had the dentist laser off many of these over the past couple of years, because they grow so large. My wrists and arms are often involved in severe painful periods, worse in the morning, and every time there is a change in the weather, I almost lack mobility. As mentioned, I have had leukopenia on many occasions, four or five times in the last year. I have had diagnosed kidney or bladder infections that were cultured out negative, but due to red blood cells and wbc they assumed at first it was an infection. At one point my platelets were under 100.000 although just barely. (96k)

With these symptoms, and the fact that the Hemo/Oncologist felt strongly we were looking at an autoimmune disorder, I honestly believed today I would find out that I had Lupus. With the negative ANA, however, I was shocked, and she admitted today she was too. She did say that I could have a seronegative Lupus, but according to my research, that is rare. I have not been tested for the other antibodies, but the hem/onc is pushing me off to another set of doctors, she says cancer wise, and blood wise, there's nothing remarkable, but I did have an elevated LDH and an inverted cd4:cd8 ratio, pointing toward at least some evidence that there is something going on, not just me being out of my mind.

I will be seeing a Rheumy but not for a month, that's the soonest they could get me in, and it's almost three hours away from my home, but its worth it, but only if it's probable that I'd get some answers, and maybe some treatment. I am just tired of feeling so terrible, I'm just tired period, I guess.

So my question is, has anyone been through this process, being ANA-negative but having many symptoms that point toward the Lupus diagnosis, and then a doctor doesn't just diagnose you and sends you somewhere else? I am just lost as to what I'm looking at. I guess I'm just looking for a little idea of whether or not I should assume that is what is going on, since I meet some of the criteria, or just stay in the undiagnosed and wondering no-mans-land that I've been in for far too long. Thanks for any input, I really appreciate it.

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Hello mama

This subject is discussed a lot on here! I am sero neg too, but i do meet enough “official diagnostic criteria” to have been formally diagnosed. There is a difference between “signs & symptoms” and “official diagnostic criteria”. From what you’ve explained, I understand why you & your medics suspect lupus. I wonder whether you could at least meet official criteria for diagnosis in the lupus spectrum.

This link to a recent discussion here gives you a few great links to officially acceptible websites with solid info on seronegativity and the lupus spectrum etc:

healthunlocked.com/lupusuk/...

Am not sure if you live in the UK or the USA, but i think official diagnostic criteria are pretty much the same:

uptodate.com/contents/diagn...

And, of course, the Lupus UK website is full of great info re signs, symptoms and diagnosis:

lupusuk.org.uk

Hope you’ll let us know how your diagnoses work out

🍀🍀🍀🍀 coco

PS this may be useful to you....i just posted my fav chart showing official diagnostic criteria:

healthunlocked.com/lupusuk/...

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Hello mamaholes,

I was diagnosed with SLE over 20 years ago by meeting other criteria, although I was frequently showing negative ANA when blood tested. I was going to my Consultant feeling dreadful yet nothing was showing up in my blood so J was referred to another Rheumatologist and was diagnosed with Fibromyalgia about 4 years ago. The doctors were never in doubt at any time I had SLE but it certainly made me feel like I was lying about my bouts of pain, so when Fibromyalgia was diagnosed it sort of explained a lot to me as when sometimes I went to the Docs and got my bloods done and nothing showed up, yet I was in so much pain I assume that my Fibromyalgia was really active. When I went to the Docs and got my bloods done and the Lupus was active, I used to feel vindicated! I’m certainly not trying to throw yet another miserable and terrible disease on to you but you sound exactly how I felt many moons ago. I’m so sorry you are in so much pain, it really is very hard to stay positive, but do try because this disease is bad enough so don’t let it take your personality away, we are all worth more than that!!

Good Luck and keep posting to let us know how you get on!

Wolf_1 🐺🦋😴💤

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Thank you Barnclown and Wolf for your replies! I am a little over my head right now, not knowing if I will be diagnosed or if it's going to be the same-old run around. I am really hoping to get a concrete answer. I have been going through this since 2015 or 2016 and it has been a long road. I feel like I see the end but who knows, I may be a little too optimistic. I see the Rheumatologist on the 7th of March, so we will see. Thanks again for your help, I have been reading up on all of this as much as possible. Have a great night, all!

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Glad you’re here! Hope you’ll let us know how you get on. Wishing you every best wish 🍀😘🍀😘

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