Not panicking. Much. UPDATE

I spent yesterday in the emergency assessment unit of the local DGH after weeks of feeling progressively worse and worse - extreme exhaustion, nausea etc - to the point where I am now struggling even to do basic stuff like getting up from my chair to make a cup of tea. There, the non-specialist consultant said she needed a specialist opinion. She joined my GP and the out-of hours GP I saw recently in saying, basically, "I have no idea what is going on".

I returned for the specialist opinion this afternoon, and now I am back home.

The good part was that the specialist was my respiratory consultant, who I like and trust. Since I last saw him only 3 weeks ago, he could see how I have deteriorated since then, and I didn't have much explaining to do.

The bad part was that he concluded that he couldn't work out what was going on either!

He suggested some minor adjustments to my drug regime - a small increase in prednisilone and stopping the myco altogether - but thought these were unlikely to be at the root of my problems.

More blood tests, a full body scan and an urgent review with my rheumy are now on order. Luckily (?), since I live only 100 yards from the hospital, I can be a "Virtual In Patient" and sleep at home.

So many thanks for the supportive replies I got earlier today. I really was in a bit of a panic


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11 Replies

  • Glad you posted whisperit...we're right by your side 👭👭👭👫👭👫👭👭👫...please keep us posted when you can

    🍀🍀🍀🍀 coco

  • thanks coco, i'll post when i can x

  • Has your urine been checked for proteins? Sounds similar to what happened to me recently, lupus nephritis. Hope everything settles soon x

  • thanks. I have lost track of what bloods Ive had done, but i think my urine was clear. am returning to the ward with many questions! x

  • Thinking of you. xxx Virtual hugs

  • thank you PMRpro. Although I didn't pick up your message until getting home, knowing that I am not entirely alone in facing this makes a huge difference x

  • Hope it all gets sorted whisperit - hug for you!

  • thank you Lupiknits!

    I feel really rough right now, but hope springs eternal...!

  • Hi whisper it

    So sorry to read how poorly you are without the doctors understanding why!. Hope the extra prednisolone helps and the further tests your having come up with answers. At least they acknowledge how I'll you are and want to know why, you've not been dismissed!. Fingers crossed your better soon. Post when you can. X

  • Thanks misty14,

    You're right, I cannot fault the attention I have been getting from my specialist teams - my rheumy specialist nurse even rang me first thing this morning to see how I was. I was dead impressed with how she responded when I explained that I was currently a Virtual In Patient. Instead of assuming that everything was in hand, she took a my whole history again, confirmed that I was taking an appropriate med regime, and said she would also tell my rheumy consultant to see me soon.

    I didn't sleep last night, and feel ghastly again this morning, but having that sense of people keeping me in mind makes all the difference x

  • Hi whisper it

    So pleased the LSNurse is looking after you very well and is asking the Rheumy consultant to see you. Hope you get treatment decisions soon, you must be very worried. X

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