10 Feb 2017 – Rheumatologist appointment. She’s totally on my side again

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Today was a good appointment.  I thought my rheumatologist was going to do an ultrasound today, but she just wanted to examine me, and book me in for an ultrasound.   The thing is, her attitude has changed. A lot!

She brought up the pictures I sent her of my feet and hands and said she wished she’d seen me then, and apologised for not getting back to me sooner.

Wow. It was nice to hear her acknowledge that she should have called me in sooner.

She told me she’d been speaking with my Immunologist, and they came up with a few theories together.  I told her about the long list of blood work that my immunologist ordered –  all the usual stuff, FBC (Full blood count), LFTs (Liver function tests), CRP and ESR (inflammation markers).  She’s also checking my folate and B12 levels, which were only done a few months ago, iron studies and my EBV (Epstein Barr Virus) status.  She’s checking my IgG and IgM,   T and B cell subsets,  and Tryptase.

She’s thoroughly checking out the status of my immune system, and also ruling out a few rare nasties while she’s at it.   When I told my rheumy that my Immunologist already told me she wants to do a bone marrow biopsy Rheumy looked shocked.  And started telling me not to worry about it.

I told her I wasn’t worried.  I understand that with my symptoms there’s a small chance that there’s something really nasty going on. When you add the big dark ugly bruises that come up regularly, then disappear, and the degree of nausea, fatigue, confusion and general yuk I’m feeling, all things are possible.  It could just be the autoimmune mish-mash that is me is just worse, and this is what is left when you take the prednisone away.

Or it could be something worse.  It’s always better to know. I did have a day where I worried about it.  I talked to a friend about it and worried about what it might mean, and considered the worst-case scenarios.  And that’s it. I won’t worry any more.  Not unless there is something to worry about.

I’m still kinda hoping this blood work comes back perfect and she decides she doesn’t need a bone marrow biopsy.  It’s an invasive procedure, its painful, and its most definately an infection risk, especially for an immunocompromised patient.

She wouldn’t order it if she didn’t really think it was essential.  Hopefully it won’t be.  My rheumy agreed.

She treated me very differently today. She was back to ‘old rheumy’.  She seemed to remember who I am as a person.  I’m not paranoid chick. I am not just an annoying anomaly that she doesn’t know what to do with. I’m a person, with a life, and a family and she was back to treating me like an intelligent, educated partner in crime almost.   When we were looking at the photos of my feet, one of them had my alcoholic cider next to my foot.  She laughed and said now she knows what my drink of choice is.  And that most patients tell her they don’t drink, even when they most likely do.  So she had a good laugh that I sent her a picture of my foot and my drink!  She appreciates that I’m honest with her.  She also understands that I sometimes drink more than I should to try and control the pain.

This comfortable, easy relationship has been lacking for a while.  I told her that I’d seen my shoulder ortho, and she did say she’d talked to her too. So I believe the combination of my Immunologist, and my Orthopod has gotten her head back in the game.

She examined my hands, knees, ankles and shoulders. She said there wasn’t much swelling there, but she could definitely feel the bogginess in my finger joints.  She is a little concerned about how I will cope with 7.5mg of prednisone, but I will see her in a week and she will perform the ultrasound scans, and she said we’ll discuss whether we slow down the taper at that time.

The appointment time is 5:30pm, and she warned me that she’s seeing a few patients, and it could be a two-hour appointment, with lots of waiting.  That being the case, she’s going to get to see me at my very much un-best.  I’m usually pretty broken by 5:30pm.  And I’ll be there potentially until 7:30pm.  That will also be good for her to see.

She checked my blood pressure, at 147/82, a little high, but Ok.  She noted the hemorrage in my eye, which can indicate BP spiking.  I get them often…every two or three weeks.

She said she was more concerned about a blood pressure drop though, because that would indicate an adrenal crisis. She ran through the symptoms of Adrenal Crisis with me, and told me that if I feel unwell to that degree, to just call an ambulance and explain I’m on long term steroids and tapering.

She’s back to being thorough, compassionate and communicative.  It’s good to have her back!

She also called my Neurologist and got his thoughts.  He said if the right sided headache continued, or intensified, or if I had double vision, to make an appointment and he would order another brain MRI to look for progression.

So she really has hit all he bases. All the things she should have been doing for the past few months, she is doing now.

I am still getting my second opinion.  But today was a good day. By this time next week she will have the results of all of that bloodwork, she will have examined my joints with ultrasound, and she should have a treatment plan.

Progress.

3 COMMENTS

  1. Thank God! Feels good to have 2 other doctors who probably took her to task and make her understand how sick you really are. Ugghh!! I hate it when you have to prove your sickness.

  2. Great news, them communicating is undoubtedly helping her to focus on just how much you’re dealing with. Still no harm in a second opinion, see what his take is and then make decisions from there.

  3. yeah, me too! I’m so lucky to have two other docs who can see it though. It’s going to be a rough ride, but we’re getting somewhere at least!!! :). Best to you Maria, hope you’re doing OK.

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