I was so hopeful that this third neurologist would come through for me. After all, I had two names to drop as referring me to her. A mutual friend and a doctor.
It was awful.
I should have known it was off to a bad start when a resident walked in the room first. I appreciate residents. I just wanted to give the doc herself my name dropping and my prepared speech that my PCP and I worked on together.
I want to be clear. I have a great job that I like. In fact, in the past 9 months of my illness, I’ve received 2 promotions including wage increases totaling more than 20%. I have not taken any time off due to my illness, except for doctor’s appointments. I am not looking for a diagnosis so I can get on social security disability. The most devastating thing you or anyone could tell me is that I could no longer work. That’s why I am here. To make sure I do what I can to get well so that never happens.
This neurologist could care less. Seriously, she couldn’t have cared less about me. Especially because she defended the last two neurologists I saw and said they were “extremely intelligent.” My response? “I’m not doubting their intelligence. I’m saying they blew me off. And the University doc was patronizing. Good bedside manner or not, she didn’t even check my atrophy and suggested that because I am a working mother that I don’t give my all at physical therapy. That is completely incorrect and shows she didn’t take me seriously.”
So, the diagnosis, “It’s your thyroid”. But my endocrinologist says that “yes, hypothyroidism can cause weakness in the legs but not like this – atrophy, hyper reflexes, asymmetry, etc.”. Neuro’s response: “Maybe you need a new Endocrinologist.” I kind of feel sorry for my thyroid getting all thi explainable blame.
So, I pushed further. “My PCP sent me here because she considers me to be a puzzle. I don’t fit the mold. For example, I have Hashimoto’s without the antibody. She wants me to be tested for things that may have not shown up in the initial testing.” After some back and forth, the Neuro finally looked at the very top of my quadriceps, where the atrophy is. I let her know that the left leg is 2 inches smaller than the right. After poking and pulling on me, she suggests an MRI of the hip and a CT scan of the pelvis and abdomen. I never did get to name drop directly to her. I think that would have made a difference.
Anyhow, my wonderful PCP called me that afternoon to see how things went. I let her know that the appointment was essentially awful and I have no plans to return. She laughed when I told her about my comments and she says we can look at doing the suggested MRI and CT scan once the muscle biopsy comes back. Sounds good to me.
I’d love to hear from you!
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Grrrr. That makes me angry to read.
I know that I’ve glossed over to my current rheumy why I left my first rheumy (essentially, after I tested positive for monoclonal antibodies in my blood, he referred me to a hematologist saying my illness wasn’t rheumatological). But mostly I didn’t go back because he was incredibly old fashioned and seemed to be trying hard to find an excuse to send me away. Not what I wanted in a doctor, and this neuro sounds an awful lot like mine.
I hang out some at the multiple sclerosis forum at medhelp.org, and even though I have no reason to think you have MS, there are some GREAT people there who really know neurologists around the country and have great advice. You might want to check it out. I haven’t been very impressed with the rest of the medhelp fora,but the MS one is very welcoming and helpful to people in limboland like us.
One thing I read there, I think — although my brain is like swiss cheese so it may have been someone’s blog — is that sometimes it’s helpful to go to a new specialist and not give all the records from your previous visits. And not to volunteer too much information, because doctors who aren’t smart or intellectually curious (and unfortunately there seem to be way too many of those) don’t like challenges. And we, my chronic illness twin, are definitely challenging.
Your PCP sounds awesome, and might be willing to help with that by only sending over SOME of your records, perhaps test results, etc., without the reports from other specialists and/or their conclusions. Sometimes I think that’s what it takes to get a fresh opinion and make them really LOOK at you as an individual. The other thing I’ve found helpful is when my PCP actually calls and talks to the specialist in question. She has had a way of piquing their interest in me in a way that I don’t think my file would on its own. Mind you, it hasn’t gotten me a diagnosis yet, but I only occasionally get dismissive docs like that.
I’m really really sorry that she wasn’t The One. And I’m so sorry that you had to go through all that while you’re just starting to recover from the biopsy. I’m sure it didn’t make your leg feel any better to get poked, prodded and pulled.
*hugs* Here’s hoping next week is a better week!!