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[whynotme]

I have all the symptoms of APS including 2 positve ACL's 22 and 19 and the specialist will not diagnose me. I have been diagnosed with MS at the age of 57. A spec in Poland told me that I have APS and to follow up in Canada. No luck here. I'm listing my symptoms.. what to do?migraine auras starting in teens, exzema,pregnancy losses(4) ,premature deliveries and intrauterine death, Raynauds, Restless leg, surface phlebitis 5 times, atypical GERD, glaucoma, heart arrythmia in 30's, livedo reticularis, major attacks of fatigue daily, feel better at night, balance problems, rt leg weakness, joint and back pain,abd bloating,hypertension, high alt vertigo . My sister had a heart attack at 45 yrs and a 4 lb baby at 37 wks, another also had phlebitis. My grandfather had phlebotomies for "too much blood" in the 1930's . Just recently I had a positive D-dimer when checked out for chest pain, CT scan neg. I am desperate for answers because sitting back and doing nothing for the MS seems ludicrous to me. I am a Medical Lab Technologist and am aware that if you can have a neg ACL titre one time and a high one another, why can't you have two lower ones!!!! I might have to go to London just to be considered and treated!

[Storky]

Hi

As a seronegative person who was told I did not have "sticky blood" after my stroke even though I had had three miscarriages, a PE and could list all the usual symptoms of Hughes, I know how utterly frustrating it is for you. In the end what you are suggesting is exactly what I did......went and saw the man himself in London.

The scary thing is that although on aspirin because I had a stroke he was the first to say that it was not enough to protect me from having another and I would have gone on to have had one.

Since having been put on the heparin there has been improvements in my Raynaulds, my speech, word finding and memory. Balance is still a bit iffy but thats probably more the stroke.

One of the things I have learnt in life is to trust your instincts and go with your gut. For many many many years I have always thought I had something wrong with me which was not what I was being told. I said to my hubby I am sure I have some sort of autoimmune condition. As it turned out I was right.

So stick to your guns and insist for your rights. Prof Hughes says that the tests are not the be all and end all of dx and that clinical history is very important. The tests are not that great for some people as they are not sensitive enough or we may have a slightly different variant antibody - they are working on better testing. Dr Khamashta is apparently the seronegative guru so may be the person to see if you are worried about that aspect.

Many people do get misdiagnosed with MS too so it would be important for you to get a good dx.

Perhaps try emailing London Bridge to see if they know anyone in Canada that you could go to as its a long way to come.

Most important thing is for you to believe in yourself and hang in there. Everyone on here knows exactly how you are feeling. Sorry thats not more constructive!

[MaryF Administrator in reply to Storky]

Well said, I too am seronegative and saw the man himself. I am only on asprin, however I am now back in St T's having been sidelined for eight years due to a PCT where dinosaurs are still at large - the same applies to my children. The best of luck x

[whynotme in reply to MaryF]

Thankyou MaryF, Excuse my lack of familiarity with the "PCT" Can you explain? Do your children have symptoms also? A concern of mine since my family history indicates strokes, premature births, phlebitis and heart attacks under 50 yrs. Are your symptoms similar to MS as well?

[MaryF Administrator in reply to whynotme]

Primary Care Trust... for each area, soon to be disbanded or in the process of now, in our area a particularly awful one. Brain fog, serious migraines and problems similar in children, all my sisters also and my father. Hope this helps. Mx

[whynotme in reply to MaryF]

I see...thankyou for explaining and pardon my inquiry, but why would you not be a candidate for anticoagulant therapy such as warfarin? Does a certain list of criteria need to be met? I too have encouraged my sisters to go on aspirin and my sons have experienced the migraine auras and the youngest heart arrythmia

[MaryF Administrator in reply to whynotme]

Hi there, I am in the middle of being assessed, my daughter now has daily migraine and on asprin, dizziness and headaches vastly reduces, she to has a valve defect and also has HSP.. when small, she had markedly blotchy legs and constant kidney infections. M

[MaryF Administrator in reply to whynotme]

ps.... all my sisters clots in legs and PE's... and multiple miscarriage, myself extreme balance and dizziness issues for days on end, and episodes of multiple clots in legs when pregnant!

[whynotme in reply to Storky]

Thankyou HughesPatient for your prompt reply. It makes me feel less alone in this. The specialist I saw here in Hamilton, Ontario, Canada is a self professed expert by coincidence, having been thrust into the field out of necessity. He claims that the universally accepted cutoff for anticardiolipid antibodies is 40 and that even Dr Hughes is in agreement. I read otherwise and that Dr Hughes would do a trial run of anticoagulant therapy before making his decision. He basically gave me "the handshake" and said to continue my ongoing treatment with the Neuro...which is no treatment by the way, My neuro is the one who noticed the livedo reticularis and had me sent to immunologists and rhuematolgists. Honestly, in this day of "Designer Doctors" because I don't fit perfectly into their round hole they are happy to pass me along or back to my neuro and get on with one thing they do comfortably. When I went to Poland, where I had the Liberation Treatment for CCSVI the testing revealed that I had a malfunctioning valve in my Lt internal Jugular vein. Malfunctioning valves is supposed to be a common occurance in APS. I had a consult there, arranged by my Cardiologist doing the venoplasty, with a specialist who after questioning me said "You have Antiphospholipid Syndrome" and that in Poland they don't need to adhere to the 40 titer level. He wrongly assumed I would be able to have it treated when I got home. Funny thing....everyone here in Canada that I saw in my quest for diagnosis emphatically urged me to stay on the Aspirin, covering their a---s while they passed this hot potato on to the next guy. I suppose you could say I'm stewing over this and need to take my next step. I did email someone in Canada, a nurse in contact with St Thomas' but she did mention the ACL of 40 and I felt I had run into another wall. I would seriously consider the trip to London if there was a real possibilty of getting to see the right people. Any and all input from you and others on this blog site is genuinely appreciated. I am very intrigued by the numbers of us that were initially diagnosed with MS and found to have APS. This supports my theory that MS is a diagnosis reached by a process of elimination and that there are many conditions that can produce the scarring or lesions in the brain that they look for to come to that conclusion, Unfortunately giving something a name is not enough

[Storky]

I have to agree with every word. The mania to conform to a specific criteria in order to get a "label" or name so that you can receive something to save your life seems to me to have gone completely bonkers, especially when doctors have signed a hippocratic oath to save lives!! What the bloody hell does it matter what its called as long as you get the medication that is needed in order to keep you alive.....deep breath!!

Most of these diagnostic criteria's are only for research and studies anyway and do absolutely nothing for Jo Blogs or the "normal" patient who just happens not to conform!! Ohhhh sorry for being so awkward.

If you are serious about coming to London I would email the London Bridge Hospital and ask for an appointment with Dr Khamashta. They will tell you what the damage will set you back but frankly it will be worth every penny! I say him rather than Prof because it will take you months to get an appointment but if you dont mind the wait......

[e-mail]

[whynotme in reply to Storky]

Thankyou for the contact info, HughesPatient, I am seriously considering the trip to London, after all I have travelled to Poland for the venoplasty. The validation I received there was exciting to me although it resulted in my not being allowed to have a stent placed in my jugular vein above the malfunctioning valve. The cardiologist and interventional Radiologist said my clotting history put me at risk. I had to go half way around the world to have professionals take my condition seriously, so London is not that far to go to. Would I need a referral to get an appointment with Dr Khamashta?

[jessielou]

Hi whynotme

Welcome and glad to meet you.

Hughes patient has given you great advice. If you can get in touch with London and come over, i'm sure they would get to the bottom of things.

I'm awkward too, not anticardiolipin positive, but lupus anticoagulant positive. So finally after many miscarriages, 3 miracle babies, dvt, pe finally a dx last year at st thomas's in London. Now gettin a little better.

Hope you well today Take

take care gentle hugs sheena xxxxxx jessielou xxxxx

[whynotme in reply to jessielou]

Thankyou jessielou for the warm welcome. I have to say that I"m starting to feel not so "abandoned" as I have been feeling lately. I was becoming quite numb and resigned to the conclusion that "oh well just make sure you stay on the aspirin" attitude that I was getting dismissed with. These symptoms that are sucking the life out of me seem to be alright with them. "just continue your care and treatment with your neurologist" they tell me.. What treatment???!!! Even he, and he is an excellent neuro, says the drugs don't work anyway, They( the MS docs) are stuck in a comfortable rut that is making big bucks for the pharma companies. Please excuse the rant.... Are you on an anticoagulant now that you are finally getting a little better? Oh yes, I'm curious, if you don't mind me asking, Did most of your clotting episodes occur in or around pregnancy or birth control, mine did, and because they never found a deep vein thrombosis I was not put on anticoagulants. Do they still do bloodwork for the anticardiolipid antibodies on you regularly? I'm wondering , as an ER doc said to me " do you just keep getting bloodtests until the result is bad so you can get a diagnosis?" as she rolled her eyes in empathy for my situation. I say "It ain't over" Thanks for the hugs, Dar...whynotme

[jessielou in reply to whynotme]

Hi Whynotme

I had several miscarriages, many years of infertility inbetween,

then had a dvt and pulmonary embolism in 2007, still wasn`t diagnosed until I moved house and changed Doctors in 2009/2010.

I asked new Gp to please test for Hughes Syndrome after seeing a tv news article on BBc news. I`m so grateful for that news article and the family behind it. My Doctor agreed and after testing negative/positive, referral to rheumy, haematologist then to St Thomas`s in London, finally diagnosed with Hughes, Lupus Overlap and Fibromyalgia.

Been on warfarin for nearly 2 years, new meds soon which will hopefully help with symptoms.

I am fortunate that amongst the pain and misery of miscarriage and infertility I had my 3 miracle children. All difficult pregnancies, traumatic births, C-section deliveries in the end. But are now 27, 13, and 12.

Had some Doctor thought to test sooner I needn`t have gone through so much heartache and pain.

I really think women should be tested before trying for a family.

I am actually negative anticardiolipins but positive lupus anticoagulant 3 times, positive ANA 3 times. Hence dx with Hughes etc. Will get further tests cos still negative for some Lupus tests, but they will probably catch up!!!!

Lots of people on here are sero-negative. I hope the medical profession around the world catch on to this!!!!!!!

Take care, Gentle hugs Sheena xxxx

[jetjetjet]

hi why i live in the states, n.h. i went in e.r. at hosp with lower back pains. had a tingling sensation over entire body 1 week earler. x-rays showed , cluster of clots right lung , left lung 1 inch clot on entire bottom of lung , other tests found clots in left leg,groin,left arm pit neck .this was aug. 31 st 2009. final dia. was on feb 17 th 2010. i was fourtunate to have a great doc at the time. so i had a pretty easy dia. comparied to most. my doc got very sick her self an went away. thats when my problems started. trying to get speacilist to understand i have a.p.s. not lupus or m.s. or lime diseaseor r.a. etc.getting meds for symtoms is a real joke dont give up !stay rite on them. the sqeaky wheel gets the grease. good luck keep us posted bfn jet

[whynotme in reply to jetjetjet]

Thanks jet, I feel your pain...literally. I have had lower back pain for a few years as well but I have to say the most annoying symptom I have is the debilitating fatigue attacks. Sometimes I can't even hold myself up straight and my balance issues make me an over cautious walker nevermind that my right leg drags. Funny thing is sometimes at night I get more energy and my leg actually works better??? A few weeks ago when checked out for chest pain and they said my D-dimer was positive they CT scanned my lungs, found no clots, and sent me home but I kept wondering where was the clotting going on then?

[Storky]

Hi, I dont know if they absolutely want a referral letter but if I was in your shoes I would contact them anyway and ask the question. If you think getting a referral would be a problem I would tell them that. Knowing them there I doubt it would be an obstacle as they are very understanding and accommodating.

Please let us know if thats what you do and how it goes. Best of Luck

[designer16]

Hi-

I was in almost the same situation. I am in the US. 19 yrs ago I had a positive Anticardiolipin test after several miscarriages. Started heparin, became pregnant & had my daughter. Stopped heparin. No one told me anything about APS/Hughes, until I hurt my neck & saw a neurologist who was studying it. She just told me I was high risk for a stroke. I moved to a new area & told them I had APS, they retested me, it was negative. They told me it went away. Ha, Ha. No it doesn't. I started having problems with high blood pressure & when I took the medication my legs would go numb. I told the dr & he told me I was crazy. Then I started having problems with my right leg like a drop foot. They did a MRI & said even though I had no lesions they still thought I had MS. Turned out I had a slipped vertebral body pinching the cord & had to do surgery. The fusion failed. I think because there wasn't enough blood supply do to Hughes. Had another surgery that screwed me up for life. Went to another neurosurgeon who said he thought I had a autoimmune disease, but not necessaryly MS. I think MS is a cop out dx for drs. Save another neurologist who said she thought I had MS even the test did confirm it. She would not even listen to us about APS. She convinced me to do high doses of IV prednisone which was not good. I finally had it & went to London. The best thing I ever did. I encourage you to go. I saw prof Khasmashta. He was wonderful. Turns about I had a PE when I was 20, bowel obstruction, ruptured appendix, miscarriages, Small babies, etc.. All problems with APS. So like Mary said you can have seronagative APS. The livedo & your history is very important for them to dx you. I am going again to see prof Hughes in a month. Good Luck & go. Designer16

[pluto5]

I was interested to read your comments, because I get most of your symptoms: balance problems, memory, exzema, pains, bloating, levido, All I have been given are painkillers which do not alter anything. I began to wonder if I had the beginnings of Parkinsons. My doctor thought it might be Parkinsonism...My D Dimer reading is high but I do not know what that indicates? I have hypertension, high BP and cholesterol, and have had several full strokes, plus APS.

I send you my good wishes.

[Lure2 in reply to pluto5]

The first thing I think of is: Are you sure it is MS? . Both MS and APS?

Sounds you need an APS- doctor that knows APS very well. I think you should be interested in Fragmin as Dave has suggested. You need to be well anticoagulated. That is important for the symtoms. Do something also with your high bloodpressure. I did have very high bloodpressure before I started warfarin. I selftest now.

Take good care of yourself. You have gone through several things.

Best wishes to you from Kerstin in Stockholm

[mully]

Hi

I have MS diagnosed by MRI and lumber puncture

many years later because of having had thrombosis in the past I went privately to see the Hughes Team

where despite having no positive blood tests I was considered to haveAPS

I started on warfarin(12 years now) and it has changed my life, without it I would have been in a wheelchair no doubt!

Mully

[Lure2 in reply to mully]

Thank you for your answer Mully! You know when you have APS and start warfarin because it changes your life.

You know no doubt that APS can be misdiagnosed as MS. I have my nearest neighbour who has told me she has MS (40 years old). I have thought that perhaps she does have APS but i have not asked her if she has tested for it yet. Are you sure you have MS after you had your diagnose of APS?

Of course it can be possible to have the two diagnoses and perhaps they are linked together as Sjogrens and thyroiddiseases and Lupus

We learn so much from your info. Thank you!

Take care. Best wishes from Kerstin in Stockholm.