All these things at once!

Since being diagnosed with aps two months ago I have been to see lots (!) Of specialists. Things keep coming out which seem to b potentially random and I'm feeling quite overwhelmed and confused.


Mri scan showed soft tissue mass in my throat

24hr BP monitor showed I am level 2 hypotensive

Blood test shows my cholesterol is 7.

Found minor gyny issue

Also had cateract in my eye

None of these seem directly aps related...

In the next month I'm due to have calcium c score scan of heart, ct scan of kidneys, breathing test, fatigue clinic, ent specislist appointment - so who knows what will come out of those!

I'm glad things are being checked out but it really does feel like a bit much!

Anyone else found random stuff wrong after hughes diagnosis?

20 Replies

  • Hi it is not unusual to have several things going on, did they mention Thyroid to you? As sometimes the first sign of it for some people is a goitre in the neck and also worsening fatigue? Hope they continue to look into things for you. Do make sure they test your Thyroid, B12, D and Iron, if you are in the middle of investigative tests. Lots of people with Hughes Syndrome/APS have Thyroid problems, and an untreated thyroid and raised cholesterol is a related issue. MaryF

  • I was just telling my husband yesterday how overwhelming it is when i decide to see one of my doctors cause it turns into2-3 appts A WEEK with specialists and other issues. He really didn't understand, said i tell drs every detail. So frustrating. Now i just want to sleep all day. Plus having 5 kids and their appts. Im over doctors for myself. I have to fool myself into continuing care for me

  • Yes I agree since Octoner2015, wen I was DX'D with APS, it's been a whirlwind of specialists, hospitals and tests! It's all cuz one doc just don't know! I also have been DX'd with RA/Rheumatoid Arthritis! Been told I'm very complicated and have a lot of inherited diseases! They want me to have genetic testing now! I say NO to that! I'm not giving up my DNA to anyone! Doing what I Gota do not to keep my INR numbers coagulated at good rate for me! That argument will happen for me on Tuesday! I understand what you say and agree, but it's good you r being tested and treated well! Most of us have to fight for everything we say or do! Good Luck and hope all goes well! Let us know how u do please! GODSPEED!

  • My specialists just don't seem to care. They arent explaining anything to me just say ok take aspirin everyday. Now I'm waiting for a new hematologist to see me, hoping her yelp reviews are bogus cause they were all horrible. Obama care insurance doctors just seem to pass me along. I think i would rather be researched lol then passed along and my time be wasted.

  • Omg where do u live! Obama messed me up disgracefully! I

  • Im in southern California. And you?

  • I live on Long Island, New York! There shud b APS SPECIALIST near you! I'm lucky because a Dr. DORUK ERKAN has a whole team of APS sat Hosp for special Surgery in NYC! He's only doc in USA that has this! He tracked at Cornell and is connected with UK for all his research! I hope I'm on rift person! Cuz I'm on anxiety support too! Another site! Good luck and keep in touch!

  • I do hope you get some answers soon. I know that with my condition I seem to get better with something then my systems break down in another at one point I asked a consultant if I was a hypochondriac? His answer no I because of the positive results I have. So do go to the appointments and with the answers that Mary has given, get some answers, write down all your questions as I know when I go to an appointment with my doolally brain I am liable to forget. If you don't get answers to your questions cause they don't know find out if you have to go back to your GP to be referred to an appropriate other. Stick up for you and get answers as to what they will be doing.

    At one point I was under an allergy professor and I said surely there must be a name for what is wrong with me. He said well if you want a name we will call it "surname" syndrome as there is no-one like you. I would love to revisit that Prof and hand him a leaflet!

  • Hope you have now got a Doctor that call it not "surname syndrome" but its real name and that he also understands your symtoms.

    Best wishes from Kerstin in Stockholm

  • Yes finally went to St Thomas and got diagnosis after 18 years of not being well!

  • Happy for you! Hold on to those doctors and be well!


  • Hi Hanbur,

    What did the Cardiologist say about your chestpain, weak left arm and high bloodpressure when yo saw him a week ago? I have forgotten; are you on anticoagulation that works for you?

    Kerstin in Stockholm

  • Hiya

    The cardiologist said my heart seems fine from echo and ecg. Also ran Doppler and that was fine. Did blood test for blood clots and I don't have any.

    Being given calcium score ct to check for arterial schlorosis.

    Been told my apl and lupus anticoagulant only just over limit so probably not that.

  • Good about the Echo.

    As I recall it you are only on Aspirin. I wonder if you have seen a real Specialist of APS. There are Rheumatologist who do not know much about APS. I think you have had typical symptoms of APS but you were diagnosed only some month ago and have not had so much time to look for a Specialist and ev "stronger" anticoagulation. Aspirin may help at first but it is not an anticoagulation drug.

    I know that we need a Specialist otherwise we go round and round and no one knows. Surprisingly many symptoms are APS-related and disappear when we are propperly and stable anticoagulated (learned from prof Hughes himself).


  • I keep being told repeatedly that since my apl is only slightly raised it can't b related to that. I do feel like a hypochondriac. I hate it.

  • What sort of antibody is slightly raised? One or all three? Some of us here have symptoms but are sero-negative. Antibodies can go up and down so that is not a correct answer if you ask me.

    Have you got a Specialist of APS? Where do you llive?


  • Apl g and lupus anticoagulant. Both slightly raised. Due to be refered to St Thomas in London but not happened yet.

  • Good. Hope you will see one there who is an Expert on APS. Many things are changed in England regarding Health-issues I have heard but I guess the Specialists of St Thomas are still there.

    Kerstin in Stockholm

  • Yes certainly in Prof Hunt's Team x

  • That is very good!!


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