Specialist

Hi, just thought i would say,opened the post this afternoon,and i have a date to see Prof Belch at Dundee on the 25 November. So although im pleased its such a quick date,im panicking at the moment on how im going to get there. As its a good 4 hours drive. Because its such short notice,my husband doesnt think he can manage to take me. Typical !! What annoys me with this situation is, how not too long ago i wouldnt have even worried about simple things like how to get there. I just havnt the confidence now.

But while im on " a moan " Even though i know i havent got a reason to at the moment

Im feeling a bit of a fraud at the moment,im feeling the best i have done in 18 months. I had forgotten what its like. So of course i have done "my usual" and do as much as possible. Because i dont know when i will have a "bad day" next.

As ive had difficulties trying to get my Gps and Neurologist to understand my Aps, and asked to see a Specialist. Will she think im a fraud ? In the letter she wants me to bring a urine sample and a list of the medication im on. Will she have the results from all my previous tests and scans ? Should i have a list of my symptoms ( my Gps and Neurologist didnt even look at them)

Any advice will be much appreciated

Christine

16 Replies

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  • Hi, please don't see this as a barrier, you need to look at community transport in your area. Do a search with your nearest town and there will be some numbers, you can then ring them to try and get help. Another plan is to send an email to all friends and relatives explaining you will pay petrol money etc. Usually community transport schemes are a fraction of the cost of a taxi or at least fairly heavily subsidized, also you need to also look into hospital transport itself, they will normally help if you can't get to hospital as long as you deal with it sooner rather than later. Do your research now, and then make those calls on Monday, you will feel better for having done it. They will make you go through a check list, answer the questions as if on your worst day! Also make it clear you do not drive and there is nobody available to take you. I would look at hospital transport first. MaryF

  • Hi,Thanks for thesuggestion. But hospital transport wouldnt work. As its 135 miles (approx) each way. But im going to have a look at train times. If necessary i will travel down the night before,and stay in B&B. I deffinatly intend getting there somehow.

  • If you have been referred patient transport should pay your train fair... and would operate to get you to the station and pick you up on your return, at least it has worked that way for me down in England. Also check if that hospital has cheap accommodation for patients who need to stay over, some hospitals have this, like a cheap hotel room. Certainly some of the London ones do. Also another cheap option is AirB&B. Best of luck. MaryF

  • I see a dr doney in dundee but they have a specialist team in ninewells. Also in victoria in dundee have a dr gentleman thats an acute brain injury clinic. Had 2 strokes ninewells i see every 6 months and victoria every 3. Dundee worth the visit. Cheryl

  • Hi Molly

    Are these doctors APS specialists? We don't have them on our list yet: hughes-syndrome.org/self-he... and it would be good to include them :)

  • As one "fraud" patient to another: see if you can get your hands on and read the book, "In the Kingdom of the Sick." The author gives the reader validation as well as a clinical perspective which helps us deal with those citizens of the Kingdom of the Well who have no idea what chronic illness citizens of the Kingdom of the Sick must live with.

    And good luck with transportation to Dundee.

    Gina in West Virginia

  • Hi Christine - please can you let me know how you get on with Professor Belch at Dundee as our charity maintains a list of APS specialists in the UK. If you'd recommend them after your appointment on the 25th November, please drop me an email at the charity: kate.hindle@hughes-syndrome.org. It's really helpful for other people to know if there is a specialist near them.

    Good luck with the drive and I hope all goes well.

    Kate

  • I would recommend Prof Belch and her colleague Dr Baines. I have been attending their clinic every 3months since last September. Prof Hughes recommended Prof Belch to me and I'm so glad he did! I have APS, Sjogren's and Hypothyroidism and they seem to understand these conditions well.

    Good luck Christine!

    Avril

  • Hi Avril. Thanks for recommending Prof Belch etc. I went to my Gp and asked for a referal. I couldnt believe my luck,when i got a date for next Tuesday.

    But at the moment im feelin "pretty human" will she have access to my notes to see that im not a "fraud" ?

    Do i need to take anything apart from a urine sample ? will they do frther tests ? and will i get any results that day ? Sorry for all the questions,but i am just wondering what happens.

    Any advice will be much appreciated. Sorry for all the questions.

    Christine x

  • Hi. Christine, I'm not sure that she will have access to your notes but if your GP has done a good referral letter that should help. You may not see Prof Belch herself but her colleague Dr Baines is very good. He sent me for lots of tests (a full MOT!) You must explain how you feel on your worst days even if you feel fine at the appointment. With this illness we experience flare ups and it's so unpredictable. Write a list of questions as you may forget on the day. Best of luck!

    Avril x

  • Thankyou x

  • Thankyou x

  • Thanks Avril - that's really helpful. We will contact both Prof Belch and Dr Baines to make sure they're happy to be included in the register.

  • I've seen Prof Belch at Ninewells and I liked her ...but it was a good few years ago and I can't remember anything else really! (Have seen quite a few drs in my life...) But I think she was looking mainly at the blood return in my leg damaged by my big DVT...

    On a practical level - get there early!

    I have found parking at Ninewells can be a nightmare -and (unlike most Scottish hospitals) you still have to pay for parking - if you park on the car park (max 4 hrs) nearest the main building it is (or was at least) more expensive, you needed change and sometimes you couldn't get a space - better parking on first car park on the RHS (car park 9) or the multistorey more or less opposite that and walking/getting the shuttle bus (depends on your mobility I guess -about 5-10 min walk to main doors) .

    There lots of buses that stop right outside the front doors from the centre of Dundee...

    Quite a walk from train station to bus station (and it is all a bit of a mess at the moment as they revamping the roads around the train station) Guess a taxi to the hospital would be around £5-6.

    Also lots of Travellodges/premier inn type places where you might be able to get a good deal on overnight stay (Travel lodge at one point £19 a night for a room for 2 - there are 3 in Dundee and all suitable)

    Also main hospital building is a nightmare too - not the best design - quite a walk to the main entrance and then that full of shops/cafes etc so a bit of a walk to clinics etc and finding your way round can be very confusing -eg it is built on a slope so the front main door is actually not at ground level but level 6 (?or similar) - you go down to most clincs etc (first time I was told to go to level 5- I got in the lift expecting to go up 5 floors - and it went down one!) . But the main outpatient bit is on level 6/main door level - so easy enough. But I have a feeling I saw Prof Belch (once at least ) not in the main building -it was another building nearer the multistorey car park etc...

    Good luck !

  • Thanks for ALL the information. My son has volunteered to take me. So seeing my appointment is 10.30 its going to have to be a very early start. Especialy if parking is such a pain.

    Thanks Again Christine x

  • No problem..was a long one! but I worry about the practicalities of going somewhere different especially if I'm not feeling 100% and my mind is on what is going to happen etc . Especially if you get brain fog. Good you will have your son for support.

    My other advice, as someone else has said, would be to write brief notes for yourself, questions you want to ask and don't feel like a fraud! ....it is actually better you are feeling well at the moment, means you will be in a better position to speak up for yourself.

    Good luck with your appointment !

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