Long, whiny post. Just skip to the end for cute Benedict photos.
I had hoped this would be a better appointment. After all this is a doctor experienced in autoimmune disorders…but it wasn’t. I tried to get through to him how 6 years of pain feels. How right now I hardly ever have any good days. How it hurts to even breath on bad days (especially while lying down). He was adamant that it couldn’t be lupus because “only” my ANA came back abnormal (twice). I have a highish titre of 1:460 – a significant finding, as although up to 10% of “healthy” people do have a positive ANA, less than 5% have one that high. And with my symptoms, so many of them classic autoimmune symptoms…I hoped he would listen. I told him about my extreme sun sensitivity, my facial rashes, the pain on inhalation, the joint pain – worse before my period, the extreme exhaustions, the confusion and disorientation after sun exposure especially, followed my flu-like symptoms for up to two weeks, the low grade fevers, the oh so painful nasal ulcers and oral ulcers, the protein and blood in my urine for no reason, and he just refused to listen. Add into all that the very pprom I had with Gideon and preterm birth, and you have a pretty clear clinical history that something is wrong.
He decided to run one more antibody test, that he says will rule out lupus…even though it’s only positive in 30% of lupus patients. He said it wasn’t RA (rheumatoid arthritis, which I pretty much already guessed) and that because most of my blood work looks normal, I’m probably fine. Well, guess what? I’m not fine. I have the copy of my blood work and yes it does look pretty much OK to me too (although I was annoyed to see my ANA was 1:460, when I had been categorically told it was ‘weakly’ positive – a blatant lie). I would expect to see low white cell count or red cells, my White cell count was 6 during my severe flare last year and 8 last week. But you sometimes have to look beyond that and at the symptoms. If we look at the diagnostic criteria for lupus:
Serositis (pleuritis or pericarditis)
Renal Disorder (persistent Proteinuria in the urine or cellular casts)
Neurological disorder (seizures or psychosis)
Hematologic disorder (anemia, Leukopenia or lymphopenia on two or more occasions, thrombocytopenia
Immunologic disorder (positive LE cell preparation, abnormal anti-DNA or ANTI-Sm values, False postive VDRL (syphilis test)
Abnormal ANA Titre
“The american College of Rheumatology (ACR) an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints and muscles, has developed and refined a set of diagnostic criteria…if at least 4 of the 11 criteria develop at one time or individually over any period of observation, then the patient is likely to have SLE however, a diagnosis of SLE can be made in a patient having fewer than four of these symptoms.”
I can highlight four of these that I have or have had over the past few years.
Malar Rash (or more like a blush)
Persistent Proteinuria in the urine
Abnormal ANA Titre
I’m not asking directly for a diagnosis of lupus. I never even mentioned it as I know doctors hate you self diagnosing. But he had a big rant about people using the internet to self diagnosis and then dismissed all of my symptoms, focusing on my joint pain as common “rheumatic” pain. Perhaps it is. But it certainly doesn’t explain the rest of the symptoms.
He says he will see me again in three months unless those tests come back positive, which I doubt. He also took an xray of a dodgy shoulder I’ve had since a car accident a decade ago. One examination it was very “clicky” which it has been for a while.
So…what is my plan? I’m going to do the only things I can, take supplements such as fish oil, vitamins, eat healthier, take exercise when I am able, try to lose weight, and make the most of the good days – no matter how infrequent they are.
I don’t want to spend my life worrying and trying to figure all this out. I had a reasonable day the other day and took Benedict to softplay. I even climbed to the top of the play frame. And then remembered I had claustrophobia and had to keep calm so as not to freak out Benedict who was having a wonderful time. Then i came down the slide (luckily made for all ages – including adults). It was great and exhausting.
Anyway my point is that I need to just keep going, do my best, and hope that either I get better (it could happen) or I get a diagnosis (hmmm) or I get some treatment that works! Whatever is, simply is right now. I’ve done everything I can. I have nothing else to do.
Anyway here is Benedict in the dome, he loved it, but got scared after a few minutes:His dad is behind him by the way, he isn’t up there alone.
and because he has been so…spirited recently (read grumpy, I’m being nice) we took him a little fireman sam ride. It cheered him up.
I think he’s dropping that first nap. He has always been a nap fighter, and goes through phases of no napping every few weeks, but he hasn’t taken the morning nap in weeks now. So he’s tired, grumpy, fed up and incredibly whiny. If only he would take a long afternoon nap to compensate, but 30 minutes is hardly enough!
I have to think of a way to relax that doesn’t involve eating. I’m thinking of going back to my drawing maybe. Or actually keeping up with this blog