Ok, truth? I only really attended this appointment in the vague hope that my immunologist might have something to offer for the constant runny nose and itchy EVERYWHERE that I live with daily. It’s not a serious symptom, sure. But it can be the thing that just tips me over the edge, the proverbial camel-back-straw.
You know how miserable you feel when you have a head
cold? Yeah, that. Every single day. All day.
All she had to offer was to change the daily antihistamine that I take to a different formulation. So instead of fexofenadine, try loratadine. Again, at 4x the standard daily dose. Similar medications, same class, just try a different one to see if it helps better.
But she was empathetic.
She always has been. Where all my other doctors want tos huffle me off as quick as possible onto someone else, she takes the time to talk to me. Frankly, I needed to complain. I needed someone to listen. I mean, honestly, I can’t eat most foods, I only ever eat two or three mouthfuls ofanything at any ‘meal’. I have constant itchy rashes, and occasional angioedema and hives. My throat closes almost immediately if I eat anything with wheat in it and it takes days to resolve. I had some wheat a few days ago accidentally (bread crumbs) and I am still having trouble swallowing even liquids. It’s like my throat clamps down, and then only another dilatation will open it up again.
But I’m not having another endoscopy and dilatation. I only had one two months ago.
I told her I’d seen the local Boy Wonder, and she told me she’d actually trained under him for several years. She has nothing but the highest respect for him, and she was very positive about me seeing him. I was going to bring all the tests he ordered, but I was so tired and fed up this morning, I just left them behind. I told her about the bone density, the massive weight gain despite eating next to no food, told her my blood eosinophils had risen on occasion, but never high enough to be worth calling her about , being only JUST about the normal range. She was happy I’m back on methotrexate and very happy that I’m down to 10mg of prednisone.
I explained to her just how hard life is right now and how close I am to upping the dose for a few weeks, and she agreed. She could see how desperate I am. I told her, very honestly, that most nights I feel suicidal because the pain is too much. I lie awake begging any deity I can think of to just relieve the pain a little. And if they don’t, I will. My son will be 18 in about six weeks. Legally an adult. Able to stay in this house and be a legal guardian to his sister (regardless of whether he’s capable of that, he is the legal adult of the house).
She knew I wasn’t kidding, and told me to up the prednisone for the week before and of Christmas. Try to get some enjoyment. A little reprieve. A pain holiday. Whatever it takes. Just hang in until early January, less than one month, when I will see Boy Wonder again.
She was openly sceptical and quite scathing when I told her about my rheumatologist and his ‘placebo effect’ speil. I swore on my kids’ lives that I’m telling the truth. About everything. She believed me, I know she did.
I told her I’m seeing an endocrinologist and because I’d found another blogger online who had very high bone density (though still about half what mine is), I’d asked my endocrinologist to order some tests for Osteopetrosis, or something alone those lines. Arthritis can go along with osteopetrosis. She agreed that was quite possible, and though there is no treatment for osteopetrosis, it would give me credibility with my other doctors.
She also said she was never quite happy with the rheumatoid arthritis diagnosis with me, I just don’t ‘look’ like an RA person. She said the diagnosis just doesn’t ‘fit’.For the most part I’m far too sick, I have too many systemic symptoms that don’t make sense, that aren’t common or even uncommon, with RA. The hearing loss. The eosinophils. The platelets. The persistent macrocytosis. The lack of any autoantibodies, except thyroid antibodies.
She acknowledged that seronegative autoimmune disease is probably far under diagnosed.
And yet, I don’t ‘fit’ eosinophilic esophagitis either. She’s never had a patient this unresponsive, on prednisone and STILL having 37 eosinophils per high powered field in my oesophagus. She has discussed me with the Australian expert in EoE. He literally wrote the text book on eosinophilic disorders. She said again, I am too systemically unwell for EoE as well. And 10mg of prednisone is ALWAYS curative.
I meet the diagnostic criteria for RA and for EoE and a few other diseases. But there is no over-arching diagnosis to tie everything together. And that’s what she is trying to find. Has always tried to find.
I told her I am always looking for someone else who is like me. The only person who is remotely similar is this other blogger. She has 4 standard deviations higher than normal bone density, her spine is severely degenerated, she has RA, IBD and something else I think. She doens’t have EoE or hearing loss, and she has other things that I don’t have. So we’re not the same…but its a connection. I cling to that sometimes. We all want to be understood…I don’t think many people understand me. It’s very, very isolating to be a rare orphan.
But back to the point. She feels that arthritis is a symptom of some other disease. Something very rare, and hard to diagnose or I’m an extremely unusual presentation. She’s still searching for the unifying diagnosis, and she feels that a bone marrow biopsy might be the only thing left. She wanted to order one in the past, along with other tests, but the expense would be prohibitive. The Boy Wonder works in the public system,and therefore he can order these tests for me and they will be free, not cost a cent. So she said she highly recommended I wait and see what he said. If, by some miracle, he had no interest in my case, or no ideas, she told me to come back to her and she’ll order the tests. She said she hadn’t wanted to put me through a bone marrow biopsy, but it might bethe only way to get more information.
She again said that I needed to get lower on prednisone. That after Christmas I should taper down to 5mg, and then more tests could be rdered. The prednisone will continue to mask whatever the true problem is, and so the deal is to come back when I’ve made it to 5mg. I told her I would need help to get there. I reminded her what happened last time. She understood.
Ultimately, she felt that something along the lines of osteopetrosis was very possible, but a variant. Because the childhood version is unilaterally fatal, and the adult version is much milder than what I’m experiencing I don’t fit the current diagnoses, but I could fall in between. Or it could be one of the more obscure eosinophilic disorders. She said given my 1 in 3 million bone density, I may literally be the only person in the world with this particularly set of symptoms. A true orphan disease. But it will be similar to something else. And she still had hopes that once we figure out the cause of all of this, there will be a treatment that will improve my quality of life.
That was what I needed to hear, I guess. I just wanted to know that at least ONE of my doctors does care and is still interested, ands till wants to help. Is still on my side.
So, its back to the drawing board. Or back to the couch. And wait.
I’m exhausted and need a rest now. But I feel better emotionally. A bit of support goes a very long way.