newbie

hi everyone.

i have just joined tonight and wanted to introduce myself. im linda and think there is a very good possibility i might have hughes syndrome. i am waiting on the results of my blood tests which were taken by my gp on 14th december but have been told it could be another week or so before i get any results and even when the results do come back my dr may not act upon them as she has never heard of hughes syndrome or even the two blood tests (which i requested from gp - read on the site which tests to get). not sure where to go from here. due to my symptoms i am being tested for alzheimers, awaiting spect scan, ophthalmologists, speech and language therapist, neuropsychologist, psychiatrist and neurologist and am thoroughly fed up with it all!! reading the symptoms of hughes syndrome i have or have had 12 of the main symptoms in the past 30 years. i would be very very grateful for some advice as to what to do next. when i spoke to the neurologist re hughes he said he didnt think it was hughes as stroke didnt show up on my last mri scan although he did admit he thinks i have had a couple of tia's. (this is a very very shortened version of whats been happening over the last 5 months although as said previously have had many symptoms for years now)

Any help/advice would be very much appreciated as am totally fed up with pain all over, headaches, visual problems, memory loss and speech problems to name but a few.

Sorry for the moan!

Linda x

15 Replies

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  • linda are you in u.k. or u.s.a. - there is alot of info you can get from this site, copy them take to your docs and make them read them, have done this it will work ,but you cant take no for an answer from them. you have to make them understand aps is real as is the sym toms. it may take a while, but be persistant, i had to do this with my 3 rd neurologist- your problems are all so familiar to alot of us . welcome you have landed in the rite place-------jet

  • Hello Linda, and welcome. This tie offers a wealth of peer information and support and some very useful articles on diagnosis and full symptomology. As said above, plenty of articles which would be of use and help to any GP. It appears that you may be on the right track. Do please keep us informed of any news you receive, and good luck.

  • I have gained so much insight into this condition (APS) since joining the group and its good to know that we can get help and information to enable us to take to the doctors. I was diagnosed many years ago whilst I was living in London (1980) also I had a baby which was stillborn at full term due to clotting of placenta. However over the years never experienced too much problems but then in March of 2011 after having a splenectomy due to low platelets etc I suffered from a TIA and have been on Warfarin ever since. But because here the doctors are baffled as to do next I have been referred back to London and I am so relieved as the doctors just hand out this and that not really understanding the condition at all. Also the unit at St Thomas is all compact and it is good to know that there are good consultants. Arm yourself with all the questions, symptoms and history and hand them to the doctor, this is what I did last time and it makes it easier, because it is all there for them to see and keep a copy and also having memory lapses it helps me too.

    It has been a constant battle down here but at least I am getting somewhere again. Also because my 16 year old daughter suffers from it too, the consultant reccommended that she attends too.

    Good luck and don#t forget we are here to have a moan at.

    Daisy

  • Hi Linda and welcome.

    I'm Dave from near Bath. I'm puzzled as to why the results of your bllod tests are taking so long. Usually the results of tests for APS come back to my GP within a week at the longest. If the tests come back positive then, if at all possible, I think you need to try to get an NHS referral appointment at St. Thomas's or a private appointment directly with Professor Hughes at the London Lupus Centre at London Bridge Hospital. At both of these centres you will be seen by consultants who know APS and what it can do. In the case of Professor Hughes you would be seeing 'the' man of the syndrome.

    I was diagnosed with APS in 2002 and saw prof Hughes several times. Even on warfarin I still get bitten by symptoms, such as: a clot in my hip; TIAs and a small stroke. Without Prof Hughes and warfarin I would probably be dead by now.

    Good luck and keep us posted.

    Dave

  • Hi everybody, this is my first time here and I am so glad I have joined. So many questions that were unanswered for years are slowly coming to light. I am 29years old and had been diagnosed with DVT 3 years back. after reading a few of your posts I realised that although i was diagnosed with it 3 years back I could have had this issue for the past 10+ years as I have had reynauds from the age of 17 or 18 years. I now understand there it could be a result of Hughes syndrome (correct me If im wrong). I must admit APS causes me no trouble as of now but after having read all the blogs here I'm begining to freak out. I am on a daily dose of asprin for life (200mg per day). Incase of pregnancy I will be moved to injections I am told by my doctor (clexane). Been married for 3 years but have been trying to conceive in the past 1 year with no luck. I am begining to worry if I am not going to be able to conceive because of APS. I have a blood clot in my leg leg which causes constant swelling and tightening of my calf when i sit for long, but i have been blessed with no pain. That has been my only symptom. Should i expect loss of vision and memory,seizures and tiredness in the future? or its not necessary to have all these symtoms. I do not know a single person here who has the same problems I do and it becomes difficult to explain to people what you really go through and why the leg is constantly swelling. Having said all this I am really begining to worry if i am going to be able to conceive or not. Is there anything i can do differently? or Do i have to just wait. My reynauds has seemed to disappear ever since i have started my daily dose of asprin and thats a relief coz pain in the fingers and toes (in the past few years) was really inexplicible.

    ever since I have been diagnosed with APS and put onto asprin that pain has gone and now i experience nothing but swelling of my left foot.

    just a word on my past :

    1) i have had an oral abortion at the age of 18. just took pills and it was over. I dont know if this could have caused the APS

    2) Been a pot head from the past 12 years. Love it. Smoke it. dont know if this has caused it.

    3) Have a stationery job and am in one place for most of the day. Dont know if this caused it.

    Please help and tell me what i should expect< what i should do? should i just continue living a normal life since i feel no pain? or am i just going to start feeling pain in my chest, or head suddenly? Will i ever have a healthy baby with no problems? aaargh!

    Please throw some ligt my way! cheers

  • First of all Linda - Blood tests can for some reason take awhile to come back especially if there has been Christmas in between. When I was first tested mine took two weeks but I have no idea why some are done faster in some labs.

    Secondly, I have to say I am biased. I was seen by Prof Hughes and I think he is just the best Doctor in the whole world (sorry but he just is!). Its not just the fact he has the knowledge about APS but it is his manner and the way he treats you. Even if you saw him and you did not have it I am sure he would point you in the right direction as he knows so many people. So if you can afford it that would be my advice because it just takes so much weight of your mind once you have that dx. Then you can asked to be referred to St T's on the NHS where they will manage the condign from then on. Good Luck

    Now Manali2512 - I am slightly confused because you say you were dx with a DVT but although you indicate you have APS you don't say if you were actually dx with it. So I am assuming you have been.

    I can't tell you what causes APS, I don't think anyone can. I also can't tell you what you can and can't do about your life style choices but my instinct is to say that smoking pot may not be the wisest of those choices if you want to get pregnant.

    Even if you were the healthiest person in the world with no medical conditions and you wanted to get pregnant, most people would stop drinking and smoking and start taking pregnancy supplements to help themselves and give themselves the best opportunity to get pregnant and have a healthy baby. I have no idea if it does affect getting pregnant but it maybe something you may have to sacrifice to give yourself the best chance.

    Anyway thats the light Im throwing your way. Hope its useful!

  • Tell the doctor it's the same as "sticky blood". That's the only thing my doctors understood.

  • Also see a Hematologist, they know what it is.

  • Hello, and welcome, I also am fairly new to the site and have already learnt so much, and for the first time in years really don't think I am going "mad" any more!! Although diagnosed in Nov last year, I am been having symptoms for at least 30 years, all of which doctors came back with hmmm we don't know! - my only advice would be if you smoke, then quit..... My APS was picked up by Hammersmith doctors when they thought my breathing/lung problems were Pulmonary Hypertension after a PE and following routine blood test the gylco protein (excuse spelling) B2 came back positive as did a 2nd test by my chest physician I got my diagnosis.

    The people of this site, are so open and friendly, I can' thank everyone enough... without this sharing, maybe we would all be thinking we are mad!

    Happy Tuesday everyone :)}

    Lesley

  • I agree ask for a referal to see a Haematologist , London if possible, I don't know why Neurologist at least mine didn't believe in Hughes syndrome. I could go on

    Karen xx

  • Hi Linda,

    My question also is are you in the USA? I am and have run into almost every doctor not Knowing what this is.. I was diagnosed with my 2nd DVT and the Hematologist said he had never seen a case of it before and he had been a Dr for 25 years..My OBGYN said she had seen it after patients had several miscarriages and was tested for it...I can't find anything online about APS in the US, it just seems Drs here arent up on it...very frustrating...

  • Hi All

    Thanks so much for your comments. They were very helpful. x

    I am 45 and have 2 children aged 22 and 3 lol !! I am in lanarkshire in sunny Scotland an have attended 3 hospitals for my symptoms both in lanarkshire and glasgow not to mention various clinics for the neuropsychology cognitive testing outwith the main hospitals.

    I was told the reason for the delay with my blood tests was - as its such an unusual blood test the lab does them in batches! ive never heard anything so crazy - if they are so unusual then why wait for more? how often do these tests get done? doesnt make much sense to me but then at the moment not a lot does!

    I mentioned to my gp about 'sticky blood' and she looked at me as if i had horns growing out the side of my head. again she said she hadnt heard of that either!

    As for asking for a referral to St Thomas' hosp, i really dont know if my gp would agree to it. I am still being tested for early onset dementia and asked for a referral to a private clinic here in scotland which specializes in cognitive testing and she refused to refer me even although she now has various correspondence from the psychologists showing there is a profound degree of cognitive failure. Who would the referral have to come through ie would it be gp or could i ask another health professional ie consultant neurologist. what would be the costs involved? dont want you thinking im a stingy scotswoman rather i am trying to be practical re costs and childcare etc.

    I did receive a call today from my fabulous speech and language therapist (who originally suspected Hughes after trawling through the internet and putting my symptoms to this syndrome) to see what progress has been made and she too was pretty annoyed about the lack of speed and lack of communication between the hospitals. it seems there is no one person who is putting all the data together and each hospital is just 'doing its own thing' if you know what i mean. apologies again for bad use of language and word finding as thats one of the many symptoms!

    anyway, id better sign off now before this turns into a book!!!

    Thanks again for your help and i'll try keep you posted.

    Linda x

  • Hi Linda, I was diagnosed in 2002, all thanks to a young asian dr at the borders general at Melrose. She had an interest in aps and other auto immune disorders.She sent me on to Dr Horne, and now Dr Anderson, who replaced her. I had heard a few years ago that the young dr from borders, Called dr Annielle Hung, had moved to wishaw? That is your side I think. see if you can track her down and get referral. Good luck.

  • Thanks so much Andrew. have checked internet and she is indeed at wishaw hospital haematology.

    i am still awaiting blood test results - could be a bit of luck but they are being processed at wishaw general hospital!

    Your info may prove to be my lifesaver. thank you and hoping you are well (as well as you can be with this horrible syndrome!)

    Linda x

  • Hi Linda

    welcome to the group feel free to ask anything and we will try to answer as you can see we are a friendly bunch.

    paddy

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