Misdiagnosed?
25 Jul
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David saw his New Jersey rheumatologist again last week. He still doesn’t have David’s file from his Texas rheumatologist. They’ve sent a second copy, but I’m tired of calling back and forth between the two offices. I want the offices to talk to each other. We signed a release form. My TMJ specialists can talk to each other. Why can’t rheumatologists? I want the NJ doctor’s office to call me when they receive the file so I can quit calling them to ask about it. And if his file is on CD, why can’t they just email it?
It was a frustrating visit all around. The NJ rheumatologist thinks David doesn’t have arthritis. David has never had swelling in his joints. David’s blood work and new x-rays looked “perfectly healthy” to the doctor. David is on “one medication from almost every classification of drugs”, but he’s in extreme pain. He’s not in remission. The rheumatologist thinks that if David has arthritis, he should be responding to all the medication. He thinks David has fibromyalgia. But, the rheumatologist is hesitant to take David off of anything until he sees David’s complete file and bone scan.
We think David does have Psoriatic Arthritis. The Humira has helped, just not as much as we’d hoped. Two different rheumatologists in Texas came up with the same diagnosis of Psoriatic Arthritis. When he was first diagnosed over two years ago, he had joint damage and high levels of inflammation.
We are so grateful someone is saying that David should be better, that this is not an acceptable level of pain. David would love to stop taking Humira and all of his medication. From how friends have described their fibromyalgia pain, I don’t think David has fibromyalgia. David isn’t tender to the touch. He doesn’t have the burning pain, or the “needle” pain.
Yet, wouldn’t it be great if he’d been misdiagnosed, and it was something simple to cure? I don’t think that’s the case, but we can dream.
Writing about David’s chronic pain and the possibility of Psoriatic Arthritis being the wrong diagnosis has made me remember something my TMJ Disorder specialist once told me. I asked him if there was something wrong with my brain, and if I could be imagining the pain. He told me that in order for me to be imagining the kind of pain I was experiencing, I would be experiencing other hallucinations. My family would have taken me to get psychiatric treatment. He told me to never let anyone tell me I was imagining the pain.
Whatever David’s diagnosis is, God’s grace is sufficient, and we are incredibly blessed to have health insurance, good doctors, and support from our family and church family. Thank you all so much for your continued prayers.
Love,
A Young Wife
Hi sweetie, oh is a hard road, isn’t it. I have chronic fatigue and fibro. his pain does not sound like fibro. Im glad David is able to work..I have been fighting Social Security disability for a couple years..I keep saying if they put themselves in my body for a few days, they would have a different decision about me!
I might be interested in doing a guest post..feel free to email me or post on my blog with details. I have never done a guest post, but would be willing to chat about my illness and it’s effect on my life and those around me!
hugs
Barb
Hi y’all. I know it is frustrating. I am praying for you. It is so hard to start over with a new doctor because so many seem to go by what they see at the moment. You can’t see pain. But it is sure real. With the diagnosis I have of psoriatic arthritis I have pain in shouders, elbows, knees, hands (sounds like a song!) but often no swelling.My doctor keeps telling me he thinks part of the pain is fibromyalgia but he is always willing to say it might not be also. He never discounts the pain though – Ashley, you and David together will find the answers you both need. It is sometimes like a frustrating puzzle that it appears someone stole a piece! Know that others understand and care.
In a way, I’m glad the new rheumy is being thorough. At least he’s taking an interest and making sure the diagnosis is correct and not just signing new scripts. I would assume the Humira has helped some of the latest results look better. Praying for you (both) always. Gods grace is sufficient and new each morning. I’m leaning on Lamentations 3:22-23 myself.
Holy crow!? Seriously? Misdiagnosed? We have a lot to talk about on Skype!
Ashley thanks for stopping by my blog, the mac and cheese is super easy..I will get the recipe to you..
Barb
I appreciate when my dr recognizes the fact that my pain level is unacceptable. But, for me, it never seems though anyone is working too hard to find answers. 6 years of pain levels at 6-8 daily. Enough already!