Fair warning, I was cranky for this appointment. I am no longer Miss Smiley-Pants. After sitting in the waiting room for almost an hour, and enduring the panic that now goes along with that, I wasn’t in a great mood when I walked in.
The first thing she asked me was whether I’d had my MRI.
Annoyance levels increase a little more.
She tells me she sent out a form two weeks ago so that I could get an MRI before this appointment, to confirm the diagnosis of Ankylosing Spondylitis.
Ten points for being prepared, except I never received the form. Maybe a phone call to alert me to the fact that it was on the way might have helped? An email, anyone?
A brief investigation (talking to the receptionist) found that the MRI referral had been sitting in her out tray for a week and a half, and she sent it out three days ago. A few more days and it might actually turn up in my mail box.
Her staff are hopeless. They are always hopeless. A simple message generally takes a week or more to get through, a simple MRI referral sat for ten days. Previously I’ve had to go in there personally to pick up my biologic script, else I would have run out. All because this receptionist can’t get to the bottom of her intray. Stunning efficiency.
Great theory, but success is all about the follow through. In the real world the thought alone does NOT count.
It took all my self-control to not give them both the eye-roll. I am most definitely not the happy, patient, understanding person I used to be. I’m done with this shit. It’s pathetic incompetence.
But people have given me the eye-roll (a lot, especially lately) and it’s not a good feeling. So I refrained. I just looked dumbfounded. And yet, I was too slow witted to ask her to just write up another one. At least I would have had it then and there. Brain sludge.
So why the MRI? My x-rays strongly indicate Ankylosing Spondylitis, but she wants an MRI to be sure.
MRIs are usually ordered in early disease to try and confirm the diagnosis BEFORE the damage is done, and therefore start treatment early enough to prevent that damage from occurring. I can’t see the point of an MRI now. And I said so…the damage is there on x-ray, a radiologist has written bilateral grade 3 sacroiliitis on it, so what will an MRI prove?
She said sometimes damage happens to SI joints in childbirth.
Yup, heard that one before. A friend of mine was given that line. But bilateral sacroiliitis, with erosions and sclerotic changes are much more indicative of AS, not childbirth. She even showed me the changes on the x-ray, the sclerotic bone being white, the widened joint space and the fuzzy edges that mean bone erosions. It was interesting to have that pointed out but also bizarre, because those changes are downright diagnostic, according to the New York diagnostic criteria.
ACR (American College of Rheumatology) have changed the name and downgraded the criteria to allow diagnosis of axial spondylitis without x-ray changes expressly to allow for earlier diagnosis, and earlier treatment. Treatment BEFORE you get erosions and irreversible damage. That’s where MRI usually comes into play, because its far more sensitive and can see erosive changes long before they can be appreciated on plan radiographs. By the time you have damage visible on x-ray, you’ve had active disease for 5-7 years, on average. You’ve well and truly missed the window of opportunity.
Yes, I have been on treatment, but I have been without any serious medication for months, and without a biologic for over a year. Damage is being done. Plaquenil is about as helpful as tic tacs and does not prevent bone erosions. If I have erosions at my SI joint, you can bet there are erosions elsewhere as well, I have inflammation everywhere.
And I thought she’d be pleased that it was such a clear-cut result. Guess not.
It’s like she just doesn’t want to believe me. Oh wait…maybe that’s me. Refer back to “no more Miss Smiley-pants”. I debated it with her.
If the damage was there from childbirth, why were my x-rays clean six years ago? (The last time I can remember having my SI joint x-rayed). I had my last child 15 years ago. If childbirth caused the damage, would it not have been seen before?
She said it can take time to develop. And that the MRI is free, so I may as well.
Well that’s a great medical argument…”You don’t have to pay, so why are you complaining?”
I’ve had enough MRIs and CTs and x-rays and bone scans to last me to the end of this life and three more. It takes time, effort, energy.
I also reminded her of the Spect CT that showed active inflammation around my SI joints, hips, and knees. If they’d scanned my shoulders I’m pretty sure they would have lit up too. It was that SPECT CT that prompted her to see what a plain x-ray looked like. It’s a very sensitive scan, and she wanted to see what a less sensitive scan showed. Now we’re going full circle, back for a more sensitive (but different) scan, and I don’t see the point. Can you say beating around the bush? Shuffling deck chairs on the titanic? Fiddling while Rome burns???
She said she needs confirmation. Ok, fine. We’re not going to get out of here unless I agree.
I’m not in terrible pain, I’m in moderate pain. I can wait.
And after that, I start a TNF blocker.
I tried to tell her about everything I’ve been through in the last five weeks. I reminded her about the hysterectomy, and reminded myself about the pre-cancer cells and made a note to chase up that pathology. I had forgotten that a pre-cancer diagnosis kicked all of this off. I guess I can understand why some people don’t believe me…cancer, surgery, complications, bleeding out, transfusion, kidney disease. It might just seem like just a little too much to believe…if you’re a cold, insufferable asshat.
She didn’t really want to hear about it, she said that’s nothing to do with my arthritis. She only wanted to know if the neurologists in the hospital put me on extra prednisone for my Rheumatoid Arthritis or for other reasons. I said quite bluntly that no, they increased my prednisone to save my life.
I told her that my surgeon didn’t give me pain relief, didn’t give me steroid coverage and I needed a transfusion because I lost so much blood. The steroids were to allow my body to cope with the crisis.
She nodded, but all she could say was ‘that’s very unusual. Dr Xxxx is usually very good.”
I’m tired of people telling me how unlikely my story is. It fucking happened. Anyone who doesn’t believe me, or didn’t believe me, is dead to me. Simples.
I told her I’d send her the hospital records when i got them.
She backpedalled and said she didn’t mean to say I was lying.
I was overly assertive, and more than a little defensive. It’s the new me. I’m extremely on edge in any medical environment now. It’s not her fault, but it is what it is. I’ve spent a lifetime making other people comfortable. I don’t feel the need to do that anymore.
I told her about my neurological symptoms, the pronounced left sided weakness and pain for the first few days, the double vision, loss of hearing. The function returned within days, but the pain and numbness remain. Too long for a TIA, too short for a stroke.
But not a migraine.
She listened and agreed, not a migraine. And she called for the MRI results, which surprised me. The appointment hadn’t been going well up to that point.
She told me there’s a venous malformation on my MRI that, to her, offers a simple explanation of my neurological symptoms. These malformations can cause headache, seizures and stokes (hemorragic). She said these things often cause small bleeds in the brain, some don’t even cause symptoms, but some do. I’ve googled, and it seems plausible. The signs and symptoms fit remarkably well, headache, nausea, weakness, dead heavy feeling…there’s a case study that I could have written, except that gentlemen had facial numbness, and I did not. She recommended I go see my neurologist and talk to him about it, let him read the films and he could decide.
Maybe I’ll do that. If so, I’ll write more about it then. It’s just a theory, but it’s better than wondering what the hell happened, and if it will happen again. I will talk to my GP, he is back tomorrow.
I have come a very long way in five weeks. When I came home from hospital, I couldn’t walk unassisted. The effort involved in using crutches meant for weeks I lay on the couch. I went to the bathroom and back and that was it. I couldn’t use my left side. I couldn’t hear out of my left ear. I couldn’t speak above a whisper. I couldn’t do anything but lie in a recliner, or on the couch. It was pretty damn awful. Minor stroke, or something else, it was awful. So many ways it could have been made easier, but ultimately time is the only thing that helps.
Time heals all wounds. And time wounds all heels. Let’s hope anyway.
But back to the rheumatoid arthritis and ankylosing spondylitis. She said she hadn’t had much luck with Simponi, and she prefers Cimzia. Also, Cimzia does not require methotrexate.
Her other option is Remicade infusions. She said because I’m a larger person, that an infusion can give me a higher dose, because they are dosed on body weight, whereas injections are a prefilled and preset dose. (No shit, I suggested that to her back when I was on Orencia, to switch to infusions for a higher dose). The bodyweight that injections are based on is 60kg. Whether you’re a 50kg woman or a 120kg man, you get the dose for a 60kg magical ‘average’ person. It’s a limitation of prefilled syringes and autoinjectors. I weigh 78kg, so I would get a higher dose by infusion.
Injections are far more convenient though. I hate the idea of spending one day a month at an infusion centre a 40 minute drive away. I’d need someone to drive me and pick me up. There’s no one I would ask that of, and it’s an expensive cab. And given my newfound panic at all things hospital, I think I’ll stick with an injection.
So it looks like Cimzia.
We then discussed mtx briefly. I told her my moods have changed with my HRT. She looked doubtful, but told me I could try it again if I felt like it.
It’s really up to me.
She has no idea what to do with me. But at least she’s no longer talking about palliative care only, like she did last time. Palliative meaning pain relief only.
She did fight for Xeljanz in there somewhere…I refused. She said again the damage that medications do to the liver usually don’t involve pain and she didn’t believe Xeljanz was the problem. I flatly refused. I am NOT going there again.
I told her that I’d read back through my blog, and that Enbrel was effective, but only for a few weeks. Humira only a few days. She told me that the only biologic she’s ‘failed’ me on was Orencia, due to an allergic reaction. Any others I can go back to, and currently my biological fail count is one. I’m not quite sure how that works, but it’s great news.
She said she is quite happy to just rotate me through all the ten currently available biologics until we find one that works.
Wow. That’s huge. Just when I was about to walk out, she’s handing me the keys to the kingdom. She knows how to bait the hook.
But first, a prednisone taper. She wants me to get to 10mg before I have the MRI. She wants to see active inflammation on the MRI, just erosions aren’t enough.
Ok, fine. Fast taper to 10mg. Four weeks for that. Two weeks to schedule the MRI, get the report, let her read it. four to six weeks to apply for Cimzia. Another week to get the pharmacy to stock it. We’re looking at mid-October here.
And then she asked about my Immunologist. I told my rheumy she’d discharged me, no further appointments necessary. To come back if my blood eosinophils ever go over 2.0. Still, my rheumatologist wants to talk to her, run it all by her. She really just lacks confidence. She hasn’t accepted that her dragging her feet has been just as harmful to me as making the wrong choice might have been. If my immunologist expresses the same opinion she expressed to me though, that I should not take further biologics, this plan is sunk.
I don’t think I really mind. I can wait. Because I’m not in horrible pain now. I’m in moderate pain. When my energy returns, I’ll manage. I’ll go back to gym. I am curious to see whether more activity makes my symptoms worse. Or whether HRT is protective.
I’ll do the taper and I’ll get the MRI and see what that says.
I will make an appointment with my GP to update him on where I’m at. If I could get rid of this headache, dizziness and brain buzz, life would be better.
And on Thursday I see my gastroenterologist to find out if there are indeed any eosinophils in my gastrointestinal tract anymore. Or any other pathology for that matter.
And I’ll decide if I want speech pathology to try and restore my voice. Get my blood work to see if my kidneys have recovered. She didn’t mention it, and I forgot, so I can only assume they are getting better, else she would have mentioned it.
And try to spend as little time in doctor’s offices as possible. And as much time living life as possible.