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My first appointment with KDM

Discussion in 'ME/CFS Doctors' started by Spinney Lainey, Jun 24, 2014.

  1. Spinney Lainey

    Spinney Lainey Senior Member

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    I went to my appointment back in May. Sorry this has taken me so long to document! I've had a lot going on.

    Generally, it was a very positive experience and am now eagerly awaiting the results.

    I went with my Mum, who I needed to push me in a wheelchair and we took the Eurostar. The Eurostar only stopped at the central station in Brussels and we got a taxi from there to Euro Volley Hotel, as getting the connecting train with a wheelchair would have been very difficult. Apparently, you're supposed to inform the stations beforehand if you plan to travel in a wheelchair (I will remember this for next time!)

    I think the taxi cost 30 euros, which was expensive but necessary. It took about half an hour to get to the hotel. We had a very good experience at the hotel with friendly and extremely helpful staff. We had dinner at the hotel, whilst watching the volleyball players.

    My Mum got excited about the 'fit men'! We then arranged with the staff to take a packed lunch the next day, as we wouldn't have time for breakfast. We also arranged at reception for the shuttle service to take us to the clinic in the morning and went to bed.

    On the first morning, I needed to be there at 8am for the lactose test, so it was an early start! It was also fasting from 8pm the night before. One of the hotel workers (who my Mum nick-named 'Gerard' because she thought he looked like Gerard Depardieu) drove us there in a van for a small charge.

    We got there on time - I commenced the lactose test and then sat in the waiting room, having to continue giving breath samples every half hour, or so. I went in for my appointment with KDM at around 9am. He got straight to business - asking me about my symptoms and ticking a checklist.

    After this, he seemed ready to finish but I then asked if I could ask him some questions he said yes and I started asking him about my symptoms and what he thought of them. I was so totally brain dead that I can't remember a lot of it and a lot of it was speculation until I get the results, anyway.

    I guess the main point of it really, was to make him aware of my main symptoms and concerns. What I do remember is that I asked him about my bloating and he seemed to think it could be caused by not having B12 injections, as this is an important factor in digestion. However, I've been tested for B12 before and my level was OK.

    I also mentioned that I'd got a lot worse since my appendectomy and he said talked about the role of inflammation. He also gave inflammation as the reason for why he thought I was having brain fog. I asked about my constant hunger and blocked nose and for both of those, he said he thought it was probably to do with prostaglandin and suggested taking a supplement of Efamol Efamarine, which I've now started taking and hasn't really helped my blocked nose much but may have helped the hunger, slightly.

    Whilst answering my questions, he was charming and made a lot of jokes. My Mum was very impressed by him, as was I. The only think we found a bit strange was that both he and a lady, who was shadowing him just watched whilst my Mum struggled with the door and my wheelchair (one of them could have held the door open!)

    I then stayed in the clinic to finish to lactose test until 12. The receptionist phoned the hotel for 'Gerard' to pick us up and we then went back to the hotel room and had a rest before going out to check out the local restaurant. It was in a stunning location with an enormous garden and a peacock! The prices were quite expensive, so we just had a drink and some starters, then went back to the hotel for dinner and watched the 'fit men' playing volleyball again!

    The next day was a crack of dawn start again and did the fructose test. I also spoke to a nurse about the tests recommended by KDM, agreed which ones I'd have and then had a blood test. They took a hell of a lot of blood and I felt totally 'out of it' afterwards - I couldn't even move my arms and went all floppy and lost all strength.

    It was the combination of not eating (because of the fasting) and losing loads of blood. After I finally could eat at 12, when the fructose test had finished, I felt a lot better. The receptionist phoned for'Gerard' to pick us up again, we picked up our luggage from the hotel and then got a taxi back to the central station in Brussels for the Eurostar.

    I'll be getting the results soon (they said 8 weeks in total from the appointment) and apparently I'll get the treatment plan about a week after that, which I was pleased with because other people on here said it could take up to three or four months.
     
    Last edited by a moderator: Jun 24, 2014
    Sushi, RML, xchocoholic and 5 others like this.
  2. justy

    justy Senior Member

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    Hi Spinney, thanks for letting us know how it all went - your experience was pretty much the same as mine - I went about a week after you did. The restaurant in the gardens is amazing isn't it? we didn't eat there but mu husband pushed me all round the gardens in my wheelchair which was lovely after sitting in the Eurovolley - which is nice, but in a bit of an industrial type park.

    Are you having your follow up apt by phone or in person - im having mine by phone but wish I was going in person now...
     
    merylg and Valentijn like this.
  3. xchocoholic

    xchocoholic Senior Member

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    Hi @Spinney Lainey

    Could you please separate your text ? It sounds interesting but I'm having trouble reading it. Tx.

    Good luck with this. Tc .. x
     
    minkeygirl likes this.
  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Yes please put in a bunch of paragraphs. Every 3 lines or so. It doesn't have to make sense but as @xchocoholic said, many of us can't read huge chunks of text.
     
    xchocoholic likes this.
  5. Spinney Lainey

    Spinney Lainey Senior Member

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    Hi Justy. Glad it went ok for you, too. And yes, I agree - that garden made a refreshing change from the industrial estate!

    Stupidly, I hadn't thought of booking my follow-up yet! Totally kicking myself! I guess I was thinking of seeing his treatment plan first but now it'll probably take ages before I can get an appointment, if I need to ask him anything....Will book tomorrow. Why do you want to go in person? For tests? I can't afford it..........
     
    Last edited: Jun 24, 2014
  6. Spinney Lainey

    Spinney Lainey Senior Member

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    Sushi changed it :)
     
    xchocoholic likes this.
  7. Spinney Lainey

    Spinney Lainey Senior Member

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    As above :)
     
  8. justy

    justy Senior Member

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    That's strange they didn't ask you to book at reception when you pay - was told I would get my results during the follow up appointment, then I think the treatment plan comes in the post after that.

    Yes I need to have an echocardiogram - he also wanted me to do exercise testing, but as I knew I wasn't going back soon I did the exercise test on the second day - yes after all that fasting and blood letting! I wasn't able to produce much energy that's for sure.
     
    RML and Valentijn like this.
  9. Spinney Lainey

    Spinney Lainey Senior Member

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    @justy - how long after your visit to KDM did you booked your follow-up consultation? I just booked mine for 11th July, which is just over 2 months after. Hopefully the results will be back then.....
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My experience has been receiving the lab results together with the treatment plan by mail or email. After that I book an appointment to discuss any questions I have. My first followup appointment was 3 months after my initial appointment. All the labs weren't back so he had not yet made a treatment plan and nothing much happened in that appointment! :(

    Sushi
     
    Valentijn likes this.
  11. Spinney Lainey

    Spinney Lainey Senior Member

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    The receptionist said I could cancel the appointment if my results weren't back and she also said that the treatment plan would be send after the phone consultation.
     
    Valentijn likes this.
  12. justy

    justy Senior Member

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    The clinic told me to make the apt for 8 weeks after the initial apt - I then asked if all my tests would be back then and the receptionist did agree that it was worth ringing a few days before and checking he had them all. I was basically told the same as you above Spinney.

    I have though e mailed the clinic at the beginning of this week to ask if they have the results and if they could e mail them to me (she originally said they wouldn't e mail them, but I thought I would ask)
     
    Spinney Lainey likes this.

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