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We went to the neurologist on Monday, and I totally dug this doctor. He did a very thorough intake; he was in there with us at least thirty minutes, maybe a little more. He was not dismissive; he listened to everything we had to say. And he treated her holistically. He obviously was looking for neurological issues, but he wanted to know about everything, and he wasn't done the second he'd ruled out MS or some such. He really wanted to help me figure out what's going on with her. I was also a bit validated when he agreed with me that there might be some latent autoimmune thing going on that we just haven't picked up on yet.
But the best thing is that he took a couple labs, and one of them was for ferritin. I am not certain how that is different from the usual testing they do for anemia, but it is. Apparently you can have an iron test come back fine but still be low on ferritin (kinda like how whenever my thyroid levels get checked, they're totally fine; it's only when they test me for Hashimoto's antibodies that it becomes clear that my thyroid is diseased as fuck LOL). So she's at 7.7 for ferritin; the bottom threshold of the normal range is 20, and he wants to get her up to at least 50.
And guess what? Our appt was at 9:00 and by the afternoon, he'd already run the labs, called in a scrip and notified me in the patient portal.
I am so happy about this! It's treatable, and I think it's going to make a dramatic difference for her.
He also said that there's a medication that we can try in future if she continues having inexplicable muscle pains, so I'm glad to have something in reserve.
OMG, I am so relieved.
But the best thing is that he took a couple labs, and one of them was for ferritin. I am not certain how that is different from the usual testing they do for anemia, but it is. Apparently you can have an iron test come back fine but still be low on ferritin (kinda like how whenever my thyroid levels get checked, they're totally fine; it's only when they test me for Hashimoto's antibodies that it becomes clear that my thyroid is diseased as fuck LOL). So she's at 7.7 for ferritin; the bottom threshold of the normal range is 20, and he wants to get her up to at least 50.
And guess what? Our appt was at 9:00 and by the afternoon, he'd already run the labs, called in a scrip and notified me in the patient portal.
I am so happy about this! It's treatable, and I think it's going to make a dramatic difference for her.
He also said that there's a medication that we can try in future if she continues having inexplicable muscle pains, so I'm glad to have something in reserve.
OMG, I am so relieved.
no subject
Date: 2019-05-08 12:06 am (UTC)no subject
Date: 2019-05-08 10:31 am (UTC)no subject
Date: 2019-05-08 12:07 am (UTC)no subject
Date: 2019-05-08 10:31 am (UTC)I love that icon.
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Date: 2019-05-08 12:42 am (UTC)Did they look at hypermobility? Because if your joints are doing things they shouldn't, it's going to yank your muscles painfully.
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Date: 2019-05-08 10:33 am (UTC)I think they did. Both the RA and the neurologist did different little exercises with her, and the physical therapy people looked at all her ranges of motion and gave her exercises to do. So, I think so. Not sure.
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Date: 2019-05-08 12:50 am (UTC)no subject
Date: 2019-05-08 10:33 am (UTC)me too!
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Date: 2019-05-08 01:31 am (UTC)no subject
Date: 2019-05-08 10:34 am (UTC)I'm so pleased.
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Date: 2019-05-08 02:16 am (UTC)fingers and toes crossed.
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Date: 2019-05-08 10:34 am (UTC)no subject
Date: 2019-05-08 02:40 am (UTC)(My ferritin got down to 6 at one stage. I felt like I had glandular fever or something, and then my GP practice called to tell me the blood test results and I was like, "Oh, yeah. That checks out." *facepalm*)
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Date: 2019-05-08 10:36 am (UTC)I feel so shitty that it's been something this simple all along, and it took us 6 months to figure it out.
(no subject)
From:(no subject)
From:no subject
Date: 2019-05-08 03:31 am (UTC)no subject
Date: 2019-05-08 10:36 am (UTC)I hope it doesn't take her long to start to feel better.
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Date: 2019-05-08 03:53 am (UTC)Glad you found a solution hon.
"HUGS"
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Date: 2019-05-08 10:37 am (UTC)*hugs*
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Date: 2019-05-08 03:55 am (UTC)no subject
Date: 2019-05-08 10:37 am (UTC)no subject
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Date: 2019-05-08 10:37 am (UTC)no subject
Date: 2019-05-08 07:20 am (UTC)no subject
Date: 2019-05-08 10:37 am (UTC)I hope it won't take her long to start feeling better.
(no subject)
From:no subject
Date: 2019-05-08 07:48 am (UTC)no subject
Date: 2019-05-08 10:38 am (UTC)no subject
Date: 2019-05-08 07:52 am (UTC)no subject
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Date: 2019-05-08 10:38 am (UTC)no subject
Date: 2019-05-08 11:32 am (UTC)no subject
Date: 2019-05-08 11:49 am (UTC)*crosses fingers*
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Date: 2019-05-08 12:18 pm (UTC)no subject
Date: 2019-05-08 09:04 pm (UTC)no subject
Date: 2019-05-08 01:23 pm (UTC)no subject
Date: 2019-05-08 09:04 pm (UTC)no subject
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Date: 2019-05-08 09:05 pm (UTC)no subject
Date: 2019-05-08 05:00 pm (UTC)Good luck to Emma!
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Date: 2019-05-08 09:06 pm (UTC)(no subject)
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From:no subject
Date: 2019-05-14 07:47 pm (UTC)no subject
Date: 2019-05-15 10:50 am (UTC)