Am I ever going to get anywhere?

Posted , 3 users are following.

Hi all,

Two and a half years ago, I got a bad case of bronchitis. The breathlessness and coughing and chest pain just never went away. It got progressively worse until I, a young woman who walked everywhere and did 4 different sports activities, could not walk across flat ground for over 20 feet without panting like I'd done the 100m sprint.

I got referred to the Royal Brompton Hospital, where you see the consultant once every three months. I've had spirometry, bronchoscopy, and various little tests like CT scans and bloods, but not got much of anywhere other than a raised white cell count and a flattened expiratory flow loop. I don't have another appointment until August.

But the white cell count was high enough to see me referred to haematology. Also in august. And now I have massive purple bruising cropping up, and feel exhausted and dizzy a lot. So my GP urgently referred me, only for them to give me an appointment later than the original. I got lots of blood tests done, most of which came back normal except for the still very high white cell count, and raised calcium levels. I was asked for a PTH test but that hasn't come back yet. I've now also been referred to endocrinology, though I have no idea why.

I feel like it's taken me over two years to even get to this point, I still have no relief from my symptoms, it concerns me that I'm now seeing several disciplines but there isn't really a holistic view anywhere, and that they're now so worried about the big purple bruises and losing sight of my main complaint...the fact that I get pneumonia 3 times a year and can't walk up stairs.

Does anyone have a similar experience who actually got anywhere? I'm beginning to feel that I'll go on being poked and prodded with no actual diagnosis forever. It's making my work life a nightmare as obviously, I have no actual reason for absence to give my employer when I wake up in the morning and just can't breathe. So it would be nice to know that others have been through this and actually had results.

0 likes, 3 replies

3 Replies

  • Posted

    Please talk to your GP he might be able to help write something to your employer to maybe adjust your work shift or make your employer aware of your condition and needs so they will be more understanding.

    Have you tried air purifiers?

    • Posted

      I was going to say the same thing and about the air quality in your house but the bruising doesn't add up.

      Are they all over or just the stomach area?

    • Posted

      They are all up and down my arms, deep purple. They come up, then fade away after a few weeks, and then return. We've had the air quality in my home checked, and the issues persist when away from home.

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