Hughes disease - Auto Phoslipid Syndrome

Hello everyone, cannot find MaryF Administrator on here who has helped me so much along with everyone else. Not been on here s while.....low immune system, unwell, you all understand.

Found out 3 out of 4 bloods positive so AOS (Hughes Disease?) . Brain scan regarding 2014 TIA and 2015 Heamaplegic migraine attack - loss of left side for days, showed as not irretrievable damage so awaiting MRI full spine scan next Sunday.

Previously told I had depleted folic acid months ago. Was being tested for lupus - great news I have not got that, but another set of bloods taken few days ago just to check readings.

MTHFR hererozygate negative gene found from one of parents. Consultant said lots of people have this no need to pay attention to. Fortunately the registrar had shared this with me and I looked it up on net. Quite interesting, folic, migraines, heart, depression, nerves however not many websites on it, just one stating people need to know about this!

Will stay in touch whilst well.

Much love and thanks for keeping me sane. Memory loss improved with 3 months folic acid 👍🏻

21 Replies

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  • Any questions especially Administrator MaryF as I'm sure parts of my body that Doctors state that's different, nothing to do with this, have all had a knock on effect or secondary/primary effect and they are all me!

  • Here I am, MaryF

  • Make sure they also test your levels of vitamin D, B12 and iron, and also run a thyroid panel to check that out also. MaryF

  • Hi Mary, previously had depleted D. I asked University City London Hospital about my iron and they added that to the bloods they took last week.

    My Dictors surgery do not like it when I mention the Internet. Also Dr Cohen in the rare disease dept at UCLH said I have not got Lupus and wants to see me now in March. She wanted to put me on warfarin but said it would do more harm then good so stay on Cloridopegil, spelt wrong but so tired apologies.

    Salstar

  • Have you seen any of our recommended specialists yet, of our charity website? If not you must take somebody to your GP surgery to act as your advocate and help you. MaryF

  • Can I have charity web site address please? Many thanks apologies for stressful posts, I am finding everything out with second opinions and just been called back from mamma gram after three days to be given hospital treatment st yet another hospital - district in three days. Plus having MRI and injections re spine two days after. Things seem to get worse even though I am trying to keep my mental attitude positive.

    Thank you for help xx

  • Here you go, appoint the person you most trust to be your patient advocate, as well as the usual tests you need iron, B12, D and a thyroid panel. Choose your most articulate friend, colleague, relative or neighbour to help you fight your corner. Write your history out in bullet points and also symptoms. Be firm and assertive with your GP. Actually it will help your GP as well as yourself to be guided by the right expertise. Best of luck and good wishes to you. MaryF

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

    MaryF

  • Hi Mary I just found this most amazing site! You r wonderful!!! I have Primary APS, but also have another extremely rare blood disorder cald Polycythemia Vera! I was dx with that about ten years ago! I recently read up on PV and it said not to be surprised if u get anothe blood disorder with this! I've had APS most of my life! At age 24 i had my first PE? Then Phlebitus, arm clots! A TIA after birth of my son! Had hi BP during pregnancy and was hi risk, also slightly premature birth! I lost my leg this past January! You're all correct about Neurologists, they just don't get it??? B4 my DX I was under care of Neurologist! He tuk several blood test and said I was ok and that I had a virus that went thru my body! If he don't know wats wrong WHY not say it! They're not GID! Two weeks later I got a call from my Hemotologist whom had tested me without telling me ! Due to the waiting of 3 monts till repeating blood tests he didn't want me to worry! I've been with him for over ten years for My Polycythemia! I do have very low vitamin D, but due to my polycythemia have extremely hi iron! I'm wondering if my PV and APS are working against each other! From PV also have thick blood! I make too much blood and use to be Phlebotomized! You are very helpful to me Mary and I wish you the best! Thank Yor for all you do! How r you feeling my dear! How has APS effected YOU? If I ever can be of any assistance to you please ask! I'm a woman from Long Island, New York!

  • Thank you for your kind reply, we are all on here to help each other out, we have many people from the USA who provide very useful knowledge to each other regarding care etc. Also some useful names on here: apsaction.com/

    MaryF

  • Hi MaryF Went to UCLH Registrar and Doctor attended. Was told just one IGM 16.9 weakly positive and looks like not got lupus. I added that four bloods one as above two high positives, one normal. Wants to see me in March. Got letter today cholesterol 8mmol/L so my doctor needs to attend to that to minimise cardiovascular risk factors. letter states: Will repeat bloods including haematinics cholesterol lupus anti screen in 3 months. Lupus anticoagulant screen negative. B12 folate and iron studies normal.

    DR VT negative, homocysteine 13.3, anti thrombin, protein C And S normal. ANA negative anti DNA Meg. Factor V Leiden Meg. Heterozygate for MTHFR found but explained from one parent but normal variant?

    Sorry long Salstar x

  • Let us know how the next one goes, you are getting there, i also added something else for you further down the thread. MaryF

  • Many thanks x

  • Hi. Mary and us other Admins are here. :)

    dave

  • Hi,

    Have you asked your GP for an urgent referrel to Guys Lupus Clinic as APsnotFab suggested some time ago?

    I think she said that they had an urgent clinic every week and your GP could call them and refer you to them. APsnotFab is also an Admin here and she also knows a lot of things like Mary and Dave.

    Take care!

    Best wishes from Kerstin in Stockholm

  • Hi if I've been told I do not have lupus but 3 out of 4 bloods I positive one low positive is it possible that I could have lupus still with the amount of bloods taken?

    Thanks S x

  • Hi Kerstin

    if I've been told I do not have lupus but 3 out of 4 bloods are positive IGM one low positive so APS is it possible that I could have lupus still with the amount of bloods taken?

    Thanks S x

  • Hello I think you have helped me before. I went to my doctors as my big toe had black lines in and a big yellow mark. I had a chipping sample taken and no fungi I went back and was given tablets again. I asked if it was the APS and he asked what's that? I informed him blood disorder. I've also been told by Hospital I have MTHFR heterozygate gene. Having an MRI Sunday on spine as nurologist thinks spine making me lose balance. Also got call back from breast scan and due at different cancer hospital on Friday as day patient.

    Feeling forgetful again and weak in fighting spirit but folic down again?

    How can I tell Doctor I want Guys when he don't even understand APS? UCLH think I do not have lupus but have taken few bloods just last week to check all okay.

    Sorry gone on a lot but surprised at another hospital and not UCCH McMillians unit as other adjacent hospitals have all bloods.

    Kindest regards

  • I will add this regarding the black lines: Under the section skin: hughes-syndrome.org/about-h...

    MaryF

  • Hi again, I wish I could help you better but I live in Sweden with other rules about seeing a doctor. I advice you to follow the advice from APsnotFab. You must speak up and that you have rights to see a Specialist. Take copies from this site an show it to the GP.

    I am sure that many of your problems would be solved if you only could talk to an APS-Specialist. An APS-Specialist knows also about Lupus. The antibodies can go up and down but when you once are diagnosed you need an anticoagulation-drug to thin your blood and then you will be better in dizziness. We have also found that the Neurologists do not "get" what APS is - too thick blood that gives us a lot of neurological issues.

    Please follow the advice of the Admins here. I can not help you with the doctors.

    Kerstin in Stockholm

  • Many thanks for your advice. I know my Doctor will say the Haemotologist has said APS even though he doesn't know what that is, also he will say they have out ruled lupus, so why would I need another opinion? Are you saying only Guys could read the results differently to the UCLH?

    If so I will ask straight away.

    Many thanks S x

  • Hi I'm on anti congulant clodipidigrel for two years. Consultant said last week warfarin would be better but more harm than good due to other health issues.

    I have made an appointment today for Dr managed to get December one but will go tomorrow and ask for one earlier.

    Thank you so much for your kind help

    S

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