Finally got my appointment ๐Ÿ˜€

Went out yesterday to come home to an appointment letter, 8.30am which would be good first appointment but I have children and hospital is 25 miles away ๐Ÿ™

Rang to change it, they had just had a cancellation 11am 3 weeks sooner.

I should have been seen in May so this appointment is a long time coming, it's my 4th appointment at this hospital, I've had several blood tests, a change in medication but still no firm diagnosis.

I have some photos to show them of the rash I had in the summer, plus details of my symptoms, worsening brain fog, can't even get the wrong word out some times, copy of blood test results my GP has done-they thought they should do some as I had not had any since Jan.

What else do I need? What to get the most out of the appointment?

It's over 12 months since I had a lung function test, I was told I have lung scarring, although I did have a chest x-ray about 12 months ago, do I need another? I get out of breath walking up stairs or a hill, I'm 45 and have never smoked.

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  • Hello gymbabe,

    Doctors like numbers and long term records. There was a brilliant post a couple of weeks ago describing how someone else here charted their symptoms on a spreadsheet, with colour coding so that relative severity could be seen at a glance.

    I have interstitial lung disease, so to monitor lung function between appointments, I have a peak flow meter (you can get them prescribed or buy them for about ยฃ12). Sometimes, I even remember to use it! Failing that, I try to keep a record of how fast or how far I can walk a standard circuit. Doing that every week - say - for a couple of months has helped me have an clearer idea of how things are deteriorating.

    With things like brain fog and pain, I wonder if it would help if you could assign a number code to how bad it is on a given day? For instance, you could score a "1" for a day when brain fog causes you to forget a word two or three times in the day, and a "10" when it is completely impossible to string a sentence together all day long? Or something like that.

    Now, all I have to do is take my own advice!

    Hope all goes well x

  • Make a diary of symptoms n severity over 7/10 day period b 4 u r appointment. Would also between then n now write down any questions that come to mind because if your like me once your there your mind goes blank and you get side tracked with the doctor guiding the app in the direction they want .the minute you leave hospital ten things will pop in to u r head that u ment to bring up.

  • Hello,

    I am sorry to hear that you have had to wait so long for an appointment.

    You might want to write down in advance a list of questions you want to ask the consultant.

    You could also keep a diary/record of your symptoms, as well as a list of all the tests you have had so far and the medications you have been on and what worked and what did not.

    You might also consider bringing someone with you to the appointment so that they can support you and ask any questions you might have forgotten and also help you recall the details of your conversation with the specialist after the appointment.

  • Hi gymbabe. Hope your appoinment goes well so you can get answers. I have been waiting 7 months for MRI x all the best x

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