London appointment today

[Charli84]

I just want to let you all know how my appointment with dr D'cruz went today.

I couldn't of asked for more. He listened to everything I had to say and I have to go back for tests and then again in October to discuss the results. We will then sort out a care plan to manage it. He told me that I'm not the worst case he's seen (which I have been led to believe) and the best bit, I am allowed a baby. I will have to have my care in the pregnancy unit in London but it will be worth it.

I'm slightly confused as to why I've been told I was not allowed anymore children and we were advised for my partner to have a vasectomy from a hospital down this way by two separate doctors. Does anybody know if I have a case with that one? It's not the money I am after all I would like is a reversal on the NHS. I'm not sure i have a leg to stand on but either way we will be having a baby in the next few years ..... All going well of course.

I feel like a weight has been lifted seeing him today. Finally not being passed from pillar to post anymore

Xxx

[Hidden]

That's great news! Really pleased for you. In terms of whether you would have a case, I'm not sure but must be worth looking into, it would seem that many medical 'specialists' are not that up to speed with this condition. I was told it is an emerging field of medicine. I'm keen to have a baby too as I've had one miscarriage and lost identical twins at 30 weeks. No live births yet. I've been battling a bit for a formal diagnosis. I tested positive for Lupus Anticoagulant after the stillbirth and then again 12 weeks later. I've also had visual disturbance. My obstetrician where I used to live said I had APS. I'm waiting to see a Rheumatologist after a battle with my GP and hopefully a specialist obstetrician in my new area- Cambridge. I've been told that there are specialist obstetricians dealing with blood disorders at my local hospital in Cambridge. Fingers crossed. How would I get an appointment with a specialist in London? Would I need a referral? Would I have to go private? Like yourself I'm determined not to give up!

[Laurabborrell]

I'm pleased it all went well. I'm currently struggling with my consultant at tommies. Prof Hughes has asked for me to change ASAP, due to a gross lack of listening and it appears understanding. The consultant I see, after a similar time in cambridge - ugh!, was not one of Graham Hughes doctors who he trained or is involved in and he is very frustrated at how things aren't progressing.....hopefully I too can get to see Professor D'Cruz as he does seem to be very good. Am pleased that your conflicting information has been resolved and what wonderful news regarding being able to have another child. Am glad that I spent the money to see the wonderful GH at London bridge where everyone is amazing....I have a follow up appt with GH in November....so hopefully progress of some sort will occur even if I have to wait to November!!!!! Ps the obs and gynae at Addenbrooke's are very good, as I saw them regarding my aps and the possibility of having children...was advised against it in my case sadly. Good luck with your continuing treatment.

[Coppernob]

catesykes, as I understand it, you are entitled in law to see any consultant at any hospital anywhere in the country, so if you can identify a consultant you want to see in London, just ask your GP for a referral to that consultant. He/she may kick up a bit of a fuss, but it's your right, so don't be fobbed off. Is worth making really sure you've picked the right consultant though, so you don't have to go back, tail between your legs, to your GP at a later date and ask for a new referral to someone else! One way to achieve that is to pay to see your consultant of choice privately in the first instance. Usually you can self-refer, though a GP's letter would always be helpful. If you self-refer, make very sure to have all your medical notes with you so the consultant knows what he's dealing with before you start. Good luck!

[bluebutterfly101 in reply to Coppernob]

Hi, I find that very interesting as like Charli I was referred to Dr D'Cruz at St Ts, but when I arrived on Monday I was seen by a Dr Lewis. I asked the receptionist why this was and was told that although my referral from another consultant was made to Dr D'Cruz, it is their policy for each new patient to be assessed by one of his team. That dr will then make referrals to whoever in the team they feel you need to see. I must say I was rather disappointed because I had written to Prof Hughes and had a lovely personal letter back from him asking me to get a referral to Dr D'Cruz. My next appt is also with Dr Lewis so I don't actually know if I will ever get to see the main man.

If I don't get the answers I want at my next visit I will look into that further

Thanks Monica

[Manofmendip]

Hi Charli

That is great news.

Best wishes.

Dave x

[Charli84]

Thanks Dave. I'm over the moon it's going to be a lot of time for the tests and also we need to get my partners thing reversed but the future is looking good xx

[bluebutterfly101]

Hi Charli, this is Monica. So pleased that you did actually get to see Dr D'Cruz as stated on your letter - I believe it is because you went for different reasons to me. I also am so pleased for you that you can have another child and that all will go well. It was good to meet you and your partner, even though it was briefly, and would love to keep in touch with you. Are you able to send a private message via my email? Don't know how this is done.

I saw Dr Lewis, one of Dr D'Cruz registrars, who was also very pleasant and explained things in an easy to understand way. I had 15 different blood tests after I left you and have an appt to go back end of September for the results. He will then advise me of my care plan and be referring me to the relevant people to look after my complex needs. I understand I will be seeing Dr D'Cruz at some stage but because I do have such a complicated medical history I need to be seen by a number of different members of their team.

At long last after so many years I feel as though I am moving in the right direction!

Hope to hear from you

Monica

[Charli84]

Hello Monica I would like to start by saying it was really good to meet you to, it will be nice to keep in touch. I also had the 15 blood tests done after, my arm today is very bruised, and I also went for a ctg ( I think that's what it's called) I have to go back for a brain ct scan, a scan of the veins in my womb and an echo.( i don't know what an echo is) and then back in October for all the results.

I also feel that I'm moving in the right direction especially after all of the doctors passing me around I feel like a massive weight has been lifted. Did you have a test done to test if you had dry eyes? I did and it was horrible but apparently I do have dry eyes ... Whatever that means I don't know.

Charli x

[bluebutterfly101]

Hi Charli, that's great I would like that too. I also have to have a lung/chest CT scan and brain ct and MRI, but he wanted to get the results back from the bloods before he moves forward with the rest.I was a bit disappointed at having to wait do long for the results as the nurse taking the blood said they would have all results back later that day! But as you say it is moving in the right direction at last. Apparently I have had Hughes for more than 40 years - going by my past medical history, but was only diagnosed in 2001. Since then have been sent from one dr to another each giving different diagnosis and treatments. It will be good to know the exact situation and how we will deal with it. I was hoping to come off warfarin after 40 years on it but the dr said that I have too many other complications to consider any of the other thinners. I wanted fragmin as so many others on this site swear by it but apparently it has a lot of side effects and would not go with all my other meds. The test for dry eyes is to see if you have Sjorgens which you usually have a dry mouth too. It is a condition that many with Hughes also have.

Will catch up again later

Monica x