Status from my PMR (?) journey

[krillemy]

As promised, here is the latest news. Last week I saw a dermatologist who specialises in connective tissue diseases. It was a professional connection of mine that made that happen. She asked a lot of questions about my skin, and took a biopsy for dermatomyositis. It could explain everything, but was earlier ruled out due to a normal muscle biopsy. Anyway that same night I was admitted to the hospital for acute asthma! I thought I no longer had asthma, however it was brought on by a virus that my family brought home from a trip to London. So I was unable to breath and all blood samples where completely off. I stayed in the hospital for 5 days, and during those, they actually stated to look at the PMR "condition" as well - might be connected. So they called the special unit for inflammatory disease and now it seems that they all agree that something is wrong, and that it is not PMR but a connective tissue disease like polymyositis/dermatomyositis, Lupus or the like. So I was put on 37,5 mg pred. for 10 days for the asthma, and I am feeling good in my arms and legs :). I was in my summer house when it happened, and omitted to a country hospital. They seemed just more professional, and less stressed out there. Sometimes it has to be very bad I guess before it is better. I hope for a diagnoses soon so I can get the best treatment and plan ahead with life and work... but let's see - it might still go wrong, and I will be back here

[jinasc]

I hope you get it all sorted out as soon as possible. If you don't hear within 7 days - a telephone call?

[krillemy in reply to jinasc]

Yes I will follow up. Has the hospital doctors direct number ....

[PMRpro Ambassador]

Oh excellent! Not the being in hospital or the asthma - but the result!

Reminds me of when we lived in Germany and our older daughter had all the signs and symptoms of appendicitis. We lived exactly halfway between the big university hospital and a regional one so when the GP said to take her to hospital we took her to the big one - so her father could visit her, he worked a few hundred metres away and it saved me a lot of messing about. On the Friday they sent her home, it DEFINITELY wasn't her appendix. On Saturday she was worse and this time I did take her to the other hospital who kept her, confident it was her appendix and they would operate on Sunday if she didn't get worse before. It so happened I met the ward doctor the following year when he did a locum for our GP and I was finally told the result: the appendix would have burst with one more episode. It looked absolutely normal from outside, all happening from the inside out.

Lots to be said for smaller hospitals!!!

[tangocharlie in reply to PMRpro]

I have a theory about big hospitals, that most of the work is done by the junior doctors who just don't have the experience, especially in the big teaching hospitals like Leeds. They are supposed to refer upwards if unsure but they're never unsure of themselves. Last year 2 mums of friends died through things not being picked up in casualty, one sepsis and one heart problem. When I had suspected GCA in Dec the first doctor I saw didn't know what I was talking about so if I'd just gone in complaining of a headache I doubt I'd have got seen so quickly.

[PMRpro Ambassador in reply to tangocharlie]

It is that lack of experience at the front line that concerns me. Interestingly, the duty ED doctors here are at least in the middle of their specialist training or higher. The baby doctors are on the wards usually - and that is where things seem to go pearshaped at times, especially at discharge!

[Hidden]

Good luck!!!

[Blearyeyed]

Thank goodness that this is being investigated more seriously now.

The Pred will also help manage some of the issues you discuss so you may feel a lot better all round , and may find you will still be on Pred in the future.

The ticking off list can take some time as they don't have a habit of doing the tests for everything at once , but in some ways , this trip to hospital may have end up having a happy ending . Or at least a Happy Chronic Ending anyway.

Good luck and keep letting us know how you are xxx

[krillemy in reply to Blearyeyed]

Thanks - I still feel a lot of support here

[Blearyeyed in reply to krillemy]

Always XXX😘

[tangocharlie]

So glad you're making progress at least in terms of finding out what's going on. When something makes you feel so terrible it helps to know what you're up against at least. I'm also interested in your story and will be following you as I have allergic responses to all sorts of things and am sure there is more going on than 'just' PMR. All the best x