New symptoms arrising

Ive had Aps and lupus for over ten years now and its been reasonably managed with daily steroids, asprin and blood pressure meds. Last December i got very confused and ever since my memory has gotten much, much worse, i now also suffer quite severe pains in my legs and what have been described as spasms in my back. Im due to go and see a Neurologist next week but I wonder if theres anything I can fo for my memory and concentration problems? Im not currently working and Im due for an assesment for disability but I dont hold out much hope as this will be my second application.

I recently managed to complete a degree but only six months later I have forgotten most of what I learned

18 Replies

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  • Hi there.

    You need to have an APS/Hughes Syndrome experienced consultant managing your APS.

    Many on here, including me, need to be adequately anticoagulated in order to deal with symptoms, including memory issues.

    Where are you located?

    Dave

  • I've seen my haemotologist and also a rheumatologist quite recently, ive had MRI scans but they revealed nothing. Im not due to see either for a few months but they dont seem overly bothered by my sudden loss of memory or concentration

  • Oh and Im in Wigan, lancashire Dave

  • Hi there, firstly make sure they check your INR is stable and high enough, secondly do really make sure that your levels of Iron, B12 and vitamin D are up to scratch and thirdly make sure they run a thyroid panel, as if any of this is not right you will feel very much worse. I hope things improve for you. MaryF

  • Thanks Mary, in all the years ive been getting treated ive only ever heard INR disgussed here, my doctors never talk about it, though they do perform blood tests.

    How would I check that my iron levels etc are ok?

    As I mentioned Im not due to see anyone but the neurologist for a month or two. No one seems overly concerned with my condition, in fact even though it'd taken ages for the haemotologist to get my meds at the correct level the first thing the rheumatologist did was to reduce the amount of steroids I was on by half. Bar the memory problems i wasnt too bad prior to that

  • all the things above need testing, and it is all in a blood test. MaryF

  • Thry've probably been tested then as I have blood tests when I go to see the specialist

  • INR is only relevant if you are on warfarin

  • Hi.

    INR is only relevant if you are on Warfarin, of course, which I don't think you mention that you are.

    Have a look at the HSF charity's website;

    hughes-syndrome.org

    and the list of APS specialists in the UK, on this page:

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

    Dave

  • Hi Tomcat,

    As I said before, the Neurologists we have found here on this site, do not "get" what APS is about - too thick blood. It has to be properly and well anticoagulated otherwise there are risques for new PEs and clots etc etc.

    Now you also talk about Lupus. I also wonder if you did find that Specialist you talked of 10 months ago?

    It is very important with APS that you keep your bloodpressure down. Especially if you are starting Warfarin. I was on baby-Aspirin at first for those neurological issues you also have (bad memory like you) but had to start anticoagulation with Warfarin to thin my blood. That is why we speak of INR when we have Warfarin. Aspirin is not an anticoagulation drug but an antiplatelet-drug. Perhaps you need something "stronger" than Aspirin now.

    A Rheumatologist, who you have seen, should know both Lupus and APS (as they are Rheumatological illnesses both and very close) but pick a Rheumatologist who is a SPECIALIST of APS! A Hematologist should understand your blood as APS is also a blood-disorder.

    Best wishes from Kerstin in Stockholm

  • I've always been told that Im not bad enough to need warfarin however i am currently taking three different types of blood pressure meds to keep it down to a respectable level.

    I dont remember which specialist I was looking for unfortunatley.

    The rheumatologist was the one who told me I also had Lupus, previously I've always been told i just had APS.

    I'm going for an interview with Atos shortly for my disability application, worried about going as I know at the last one they were next to useless.

    Thanks for all the help though.

  • Please look at your earlier post here. Mary and Dave had given you info about APS-Doctors and you were going to see one.

    I can tell you that it is very unusual to first be diagnosed with APS and later on with Lupus. I wonder if that Rheumatologist did understand APS.

    For you own sake look for a SPECIALIST. I know and also a lot of other members here, how exstremely important it is to get a Doctor who knows what symptoms to look for.

    APS will never go away but it is treatable and you must have someone who can give you the right drugs!

    Kerstin

  • Thanks Kerstin, in the middle of major changes in my life so once things settle back down I'll see about finding one. I will say that I've had my bloods checked again recently by my neurologist (due to my memory problems) and I am low on b12. Any idea how much difference this will make to my memory and concentration?

  • I do not know so much about B12, but I do know that it is a important bloodtest to feel good when you have autoimmun illnesses. Mary often speaks of that!

    I do not know if you ever have seen an APS-Specialist but you may also have been diagnosed with Lupus. Are you now on Baby-Aspirin? It is also important that you keep your bloodpressure down.

    Try to get copies of all your bloodresults from the time you were diagnosed (was it 5 years?) Also talk to you GP and ask to be referred to one off the list as you live in the UK. Perhaps you need something "stronger" than Aspirin and with the right Doctor (an APS-Specialist also knows about Lupus) you will get the right drugs for APS and ev also for Lupus and you will feel much better!!

    Tell us please how it goes for you!

    Kerstin

  • I was diagnosed about 13 years ago now, I spent a good few years seeing Dr Pendry at Wigan A&E. Around the time I had been diagnosed I asked about seeing Dr Hughes in London but after he saw my notes he said that although he'd see me if I wanted I was already being treated correctly so there was no need.

    Currently on Baby Asprin, Prednisolone and three different blood pressure meds (Atenolol, Amlodopine and Lisinopril) Should be starting my B12 tomorrow, hope to god it starts to help with my memory and concentration...

  • It will be fine that you start with B12 tomorrow.

    Good luck with yóur disability application! Hope you will sort everything out soon.

    I wish you A Happy New 2016!

    Kerstin

  • Thanks Kerstin, Happy new year to you as well!!

  • Well I'm a couple of weeks into the B12 and although my energy levels are on the up my memory and concentration are sadly no better.

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