Looking for some help, feeling very lonely

Hello everyone,

It's my first time here. I'm a 30 year old man and I'm Just looking for some help and answers in what has been a tough few months.

Over the past few months I've been having terrible heart palpitations. So much so they have nearly made me collapse on occasion and certainly put me in to hospital a few times. I'm currently on a 7 day monitor which almost certainly will catch it.

I suffer from horrendous leg spasms, bladder weakness, numbness, crushing fatigue, mouth ulcers, dry eyes and splinter haemorrhages.

All the while my GP is refusing to help and just keeps trying to fob me off as I'm clearly stressed and it's all in my head even knowing my family history

I've had a clear mri and all blood tests he has done are fine.

I have a family history of immune disorders and my mum has a positive diagnosis for APS and MS. I'm planning on seeing my GP tomorrow to ask about the blood tests listed on the Hughes website, on my mums advice.

Just wanted to see if anyone else has any ideas or thoughts. Helps just getting that off my chest to be honest. Don't know if this is the right place to do it but hey....


16 Replies

  • Hi and welcome, and yes to those blood tests, but do them at the hospital as the samples taken are time sensitive is is also important that your GP refers you to the nearest specialists on that website, in you area, and that you also have your vitamin D, B12, Iron and Thyroid tested, very important, please let us know how you get on. MaryF

  • Thank you for your reply I have had the vit D, B12 and iron. All okay. Also had an ANA which came back negative

  • That is a starting point, please make sure the Thyroid is done, and also these:

    Anticardiolipin antibodies (aCL)

    Lupus anticoagulant (LA)

    Anti-beta2-glycoprotein-1 (anti-B2GP1)

    Also always a good idea to get print outs of any tests already done, so you can actually see the levels of things.


  • And if your GP is not listening to you, attend the next appointment with your most articulate and firm friend, relative, colleague or neighbour to act as your advocate. MaryF

  • Have you had any tests at all for autoimmune disease? The blood tests are so simple I wonder why doctors are so reluctant to do them. Splinter hemorrhages were one of the first things that sent me to the doctor. They are incredibly painful for such an insignificant sign! My problem was that I was in Europe for 5 weeks and they had nearly faded by the time I came home. I munched on a lot of paracetomol at that time. :(

    Can your mum go with you to the doctor? If you're feeling less than 100% it's hard to remember everything you want to ask.

  • Hi and welcome to this friendly site for APS !

    I wonder if your mother has a Specialist for her APS and MS (both illnesses at the same time are uncommon but MS and APS are often mixed up) and that you could speak to that Specialist and ask him to get a blood-test done?

    I wonder if you two have read "Sticky Blood Explained" by Kay Thackray? She has APS herself and writes about the symptoms we usually have. Many members on here like that book.

    Please let us hear how it goes for you!

    Best wishes from Kerstin in Stockholm

  • You not alone anymore . X

  • If your GP won't listen you may have to see another or even change GP's. You may also want to consider Bechets another condition quite often having similar symptoms to APS. I myself was evaluated for it but APS was confirmed. I say this because you don't mention migraines a very common feature of our condition. Autoimmune conditions often seem to run in families but they can change ever so slightly so that one family member has MS another, RA and another Bechets. Look up the symptoms and see if you may be a fit. Bechets have 3 specialist centres throughout the country with muti disciplinary teams which are centres of excellence.

  • You are not alone now. Like you I'm new to this site and I have found it to be very reassuring. The advice here is excellent. Don't give up with the doctors someone will listen.

  • Hi, I think you are doing the right thing but if your doctor isn't helping - get a new one and try again! They are there to help not hinder!

    Good luck.

  • Seen my GP this morning who can't do any of the tests on the Hughes website without a referral from a rheumatologist or haematologist

    After a 40min battle and discussion he has finally agreed to refer me to a local rheumatologist.

    He originally didn't know what to do and wanted to wait and discuss it with a colleague.

    I've been trying to get help for 4 months and maybe now I will get some help!

  • That's good you got the referral but I don't like the sound of your GP! Can you not change to a different GP who is willing to work with you to try and help you as best they can? I have not heard of a GP not being able to order a blood test without a referral he sounds like he was being awkward.

    Glad you have got a referral but is it with an APS expert or just the local rheumatologist?

    Wishing you the best of luck and hope you get the answers and treatment you deserve.

    Kelly x

  • Well done! That's s start but I agree your GP is being difficult and suspect is being held back by local CCG funding restraints but you can once again fight that. As you now have agreement for a referral, go to the above pinned posts, look at our list of specialists depending on your location, then once you know the name of the one nearest to you, if it's not the one you are being referred to, write an email to your practise manager and tell them that you want the referral to that specialist. Say that patients are allowed under the NHS guidelines to go to the Hospital of their choice and see the Dr of their choice and that was the whole point of the CCG changes to give patients more choice!

  • thank goodness you got the referral I w as diagnosed with sticky blood after a stroke I also had AF I did not get to see a specialist until last year good luck and please let us know how you get on

    regards Rose

  • Brilliant news! Good luck.

  • Yes I agree with the others that it has to be an APS-Specialist!

    If your mothers APS-Specialist is not willing to do the tests you must look for a Specialist. I think you need one as you have autoimmun illnesses in your family.

    An APS-Specialist is usually a Rheumatologist or a Hematologist and that person also knows about other autoimmun illnesses like Sjögrens, SLE or Thyroid-issues (they are known to be "cousins"). He knows that MS and APS often are mixed up as the symptoms are mostly the same.

    We have found here on this site that the Neurologist do not "get" what APS stands for - that is too thick blood that has to be properly and stable thinned.

    Good Luck!

    Kerstin in Stockhom

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