Newly diagnosed APS

Mea few seconds ago

Hi

Today my hubby has been diagnosed with APS after being told he had thrombophilia for the past 25 years. Told has to stay on warfarin 12 mg a day currently. Haematologist told him doesnt want too see him again. He is under vascular surgeon for leaking veins and blood pooling in bottom of foot. Cardiologist for constant chest pains. He has chronic lower back pain and now pain in groin. He also suffers with bad headaches. Does anyone know of any APS specialists near Cambridge dont care if have to pay private but to say no more can be done and ring this number if you think you may be clotting. Any advice would be appreciated

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10 Replies

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  • Hello

    I'm sorry your husband has just been left. He does need to see an expert in APS. Here is a link to the recommended list of APS Drs for the UK. You can see some privately. Ask you GP to refer you to any of these and they should be able to help. Kelly x

    hughes-syndrome.org/self-he...

  • Hi and welcome

    I see one of our other members has kindly provided you a link to a list of APS specialists in the UK.

    Please let us know how your husband gets on.

    Dave

  • I have aps and live in Norwich. There is a leading aps specialist named dr c mukhtar ( not quite sure of spelling) at Norfolk & Norwich hospital.

    Also don't know names but a very good rheumatology unit at Ipswich hospital

    Ask your gp for referraled to Ipswich . I would try Ipswich first as I've been under dr mukhtar for 3 years and am now being referred to Ipswich by my gp as not happy with my last consult with him. Gp quite upset

    Very best wishes

    And good luck

    Diane

  • Was your GP upset with Dr Mukhtar? Are you not happy with him either?

    If you have been referred to Ipswich hospital are you sure they have an APS-Specialist there? Is Dr Mukhtar known and on the list? He should not be there perhaps? Important to get the right Specialist!

    Kerstin

  • GHi kerstin

    dr Mukhtar is extremely good he diagnosed me when no one else thought of aps However because of all the problems I have I think he couldn't possibly deal with it all at once so both my gp and I think I Need to try elsewhere

    He is on the aps list

    My gp assures me they are very good

    Regard

    S diane

  • This is disheartening to read as Dr C Muktar is on the list of recommended specialists. Do you mind sharing your experience?

    Thanks

  • A few months ago I had my appt with Dr Mukhtar. He asked how I was and I told him about problems I was having and asked him when I would feel marginally better. He told me I was as good as it got. With that I left. I thought it was a good appt and jokingly referred to my glycerol trinitrotoluene patches as my g & t patches as I call them and we laughed about it.

    However a couple of days later I received a copy of his letter which he sent to my gp. It stated I had many problems and he couldn't possibly deal with them all on my present medication so I would have to go on my grumpily way. Shocked I thought he was talking about another patient or even his secretary had made a mistake as he never mentioned to me about alternative medications. I was very upset as I felt I had nowhEre to go.

    A couple of weeks later my lupus really flared I spent three weeks getting from bad to worse and eventually had to see my gp.

    He read dr mukhtar's letter. I commented that perhaps he had a bad day or was extremely busy that day but my gp said that was no excuse and asked me if I would consider going elsewhere and has referred me to Ipswich hospital. I am awaiting an appointment now

    I will always be grateful to dr tMukhtar for diagnosing me and giving me a measure of my life back and I wish best wishes but perhaps my gp is right and I need more than dr mukhtar is prepared to offer

    Regards Diane

  • Thank you for sharing. I'm sorry you have had a bad experience and I do hope your next dr will be able to offer you some more help. X

  • Many thanks and best wishes

  • Has your husband been tested for sleep apnea? It can also cause chest pains and headaches. He could have some vascular issues in his lungs as well from undiagnosed blood clots. I used to have a lot of swelling in both my feet and ankles before my diagnosis. Blood thinners have helped this a lot. I suspect your hubby has probably had many undiagnosed DVT's in his legs that have contributed to his leaking blood vessels. The best thing he can do to help his feet is to wear medical grade compression socks. His chest pain could be from many different issues. Maybe they can do a CT scan to rule certain things out. An echocardiogram would be another useful test to check for heart valve damage or pulmonary hypertension. APS can also cause pulmonary hypertension. Again, these are merely suggestions. Your hubby might actually not be too bad off, and the blood thinners might make most of his symptoms (even his aches and pains) go away. His stomach pain could be from lack of blood flow during digestion, which will also get better once he has been on blood thinners for a while. Hang in there. Your hubby is lucky to have such a swift diagnosis. He is protected from blood clots now. His condition has already begun to improve immensely.

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