The next step?

When I come out of a medical appointment be it with my asthma nurse, or one of my physios, or my rheumy I usually have an idea of the short term goal. Usually it is to try a new inhaler or try some different exercises or go for ore tests, and on the whole I am pretty happy with the outcome of my appointments at first.

But after a day or two I’m usually still thinking about my appointment. And it’s by then that I realise that I still don’t know what the next step it. With my rheumatology appointment, for example, I go in she asks me how I’ve been, asks what is sore, may or may not to a physical exam, sends me some bloods and then I’m on my way. Then a couple of months later I would get a 2 line letter saying the bloods are the same as usual I’m sending you for another scan. But what is the next step?

To give you a little summary of my joint issues… I started getting sore joints 6 years ago, went to my GP who referred me for physio, after numerous rounds of physio with 2 different physiotherapists I was sent to the rheumatologist. I didn’t have swelling in any of my joints just pain. Then a few months ago my hips flared and they have been bothering me ever since. If I am standing up too long my hips get pink and hot and sore. A month or so later my ankle was bothering me, but this time only with swelling and pain. There was no pink/red colour to my skin and no heat. Last week my knees flared too… They both got hot and pink and sore and puffy.

So I’ve now been started on a quite strong NSAID called indometacin which has helped a fair bit with my morning stiffness but my joints are still getting more and more puffy as the day goes on, my joints are still sore. So now I wait till my next rheumy appointment. They are supposed to be every six months, I waited 11 months last year to find out the my next step was just taking me in a big circle again… More tests, more scans, more physio, no answers. So what is the next step? I’ve had people asking me if I am taking immunosuppressants or steroids for my joints but I’m not. I have no official diagnosis. I have no idea if my next step is to try a medication called methotrexate which is often used in arthritis if it isn’t controlled by NSAIDs alone… but in all honesty I’m not entirely sure I have arthritis, all I know is that “my symptoms sound like arthritis”.

The same goes for my asthma clinic appointments although they are a lot more productive. I have realised that my steroid inhaler has not been increased since my diagnosis despite an increase in the severity and frequency of my symptoms. Yes, I do increase my dose when I have a cold, but by then I feel terrible. I don’t come out of the appointment thinking that I know what my plan is for the next 6 months, and I know that is partly due to my asthma being, to a certain extent, uncontrolled. But I would like to know what my asthma nurses aims are. Does she want to get my peak flow back to 400? Because at the moment all I am being offered is oral steroids, which I don’t really want to take unless I have to. So what is the next step with this.

Every appointment I go to I have a little list either written down or in my head of things if like to know by the end of my appointment. But not many of the things on my list are answered very often. And yes I’ll admit sometimes I don’t push enough for the answers or I will get side tracked my something that has happened during the appointment. But what my aim is for my next appointment is to know what the next step is, be it a dose increase, a medication change, a new approach to thinking about something, a new doctor… Anything.

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15 thoughts on “The next step?

  1. I dont think should always need to know the next step as it is the next step it might not come to that, things might change etc. I go into my appointments with the idea I wont get anything out of it so when I do it feels more postive and not get upset when I dont get anything

    1. Haha that’s a good take on it. I think I’m a little OCD about everything now, especially with rheumy appointments, since its been 6 years and I still have no answers. I’m not even sure what my bloods say. I’m going to give your idea a go and just have urgent questions and see what happens πŸ™‚

      1. I would look up what my tests results meant if I actually knew the name of the antibodies that are present in my blood. All I’m told is that I have antibodies that indicate juvenile arthritis but no specifics or numbers even when I ask for it. I think I need to be blunter with questions πŸ™‚

      2. I’m supposed to get but I haven’t had any. I’m going to try phoning my rheumies receptionist and see if they would send them

      1. 1st a dr who specializes in cfids in charlotte…internist and rheumatologist who also has fibromyalgia,which is also part of cfids… yes auto-immune disease…
        it took several years.. was bitten by mosquitoes in st thomas.

      2. well i was just telling you cfids..your immune system doesn’t work , so a lot of people get asthma and fibromyalgia… but now i am very ill from toxic molds-12 yrs- bronchitis and heart problems dehydration and 1 million other problems mold caused…so i was just saying check into cfids.dr in charlotte is dr cheney, but he moved to another city..

      3. Thank you for the advice… I’m googling it now and I’m going to ask my rheumy at my next appointment. Hope you feel a little better soon!

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