I would like your opinion

I am in a kind of dilemma (not a bad one).

My health situation is that I have APS (Antiphospholipid Syndrome), ITP (my immune system is destroying the platelets), PTC (Pseudotumor Cerebri). In the last 14 months I had 1 small CVA and 4 TIA, the last last week.

I am followed in an hospital that is close to my home (20 minutes walk). I am followed by a neuro-ophtalmologist (for PTC), a neurologist specialized in strokes, a neuro-immunologist, a rheumatologist and a haematologist. All are very competent and all have a good knowledge of APS in their domain.

What is missing is a specialist in APS.

I have the possibility to be followed in another hospital and see a specialist of APS there. The problem are that this hospital is far (1 hour by car, 1 hour and half by bus) and that I will have to be followed by specialists only in that hospital.

In both hospital they are in the opinion that I should be followed in a single hospital. And my assurance won't allow me to see two doctors with the same speciality in two hospital.

Now I don't know what is the importance of a specialist in APS and I am not sure if I should switch or not. I would love your opinion on that subject.

3 Replies

  • Hi,

    I was faced with a similar situation although the my commute was not that far. My haematologist is not an APS specialist but is up to date with everything. So after my hospital stay at the beginning of the year, I had to decide to keep all of my specialist in the one spot (which is way more convieniant) or switch. I stayed and so far, my health is being managed to the same effect in sure it would be with an APS specialist. However, I also do depend on this forum for answer though.

    Life is already hard with these medical issues so if the stress of longer travel will undo any good, I wouldn't.

    Best of luck!

  • If it were me, I would stay as local as possible, especially if the care and knowledge is good regarding Hughes Syndrome/APS. Some medical staff are rapidly improving their knowledge of the syndrome in detail, while others do not. There are plenty of books for sale regarding this condition on our charity website. I gave quite a lot of the doctors my family see, some of these to read, having read them myself. MaryF

  • Hi David where abouts are you ? I would agree with Mary re keeping local and withon one hosptial. Like you, I have a number of issues dealt with by different depts and this seems enough of a nightmare for co-ordination etc. I wonder if you would be able to become on 'friendly terms' with an APS specialist who could monitor and advise your team from afar ? I have a brilliant heametology dept who seem to have adopted this model - much as i was loathe to give up going to see them in person, they now look at my bloods on the computer and advise my GP/ Neurology etc. I couldnt say the system is perfect but i might be something worth pursuing - you can but ask.

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