Sticky Blood-Hughes Syndrome Support
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Hello everyone. I just need to vent my frustration. After an aggravating 5 weeks of illness, weakness, a TIA, aphasia, loss of appetite, neuralgia, blurred vision and migraines along with a previous diagnosis of APS, my neurologist insists that I don't have APS because it didn't show on recent blood work. I am exhausted and I've tried to tell myself it's mind over matter but it's more than that. The neurologist stated that I only had on lab abnormality and that could have been caused by a previous viral infection. I have had all kinds of imaging possible. I don't know where to go from here or what to think or to expect.

21 Replies

Unfortunately neurologists are frequently mentioned in terms of poor diagnosis, you need a proper Hughes Syndrome/APS specialist who has a working knowledge of the condition also reading previous paper work showing your diagnosis as results come and go, also some are sero negative! Let me know where you are located. MaryF


Hello Mary, I am in the US. My husband and family are will to take me anywhere to seek the medical help I need to feel normal again. Thank you for responding!


Local knowledge from others in the USA will be helpful to you, however you can always look at the names on here and make some telephone calls, as somebody may guide you to better care: MaryF



I agree with my colleague, Mary.

Perhaps you should have a holiday in the UK and have a private consultation with Prof Hughes at the London Lupus Centre.

Dave :)


I can't say how strongly I feel about Neurologists.

I think they have had something missing in their training or don't want to admit that they have given so many people the wrong diagnosis. Their is with the one exception though A neurologist found at st Thomas along with the haematologist who suggested him.

I don't know how it works in the US, but I think we are entitled to have a second opinion.

I would try to get it ASAP if you are not able to travel, I am sure there will be someone on here who will tell you where you can go for proper diagnosis

Good luck please tell us how you get on


Thank you all! I am hoping for good news upon seeing a hematologist next week. At least it will be part of the work-up required before my doc will refer me to an APS specialist 4 hours away. I also have to be seen by another psych group to rule out conversion disorder...again!


It sounds like a total waste of time to me - why see a psych when you haven't got it?


Im just curious....what does this neurologist say is wrong with you then? Does he think that a TIA is all in your head? Do the scans support a TIA? If so how does he explain that because that is physical evidence.

I remember getting a rant from a Doctor once after getting my dx which had been given when I was seronegative. he banged his long boney fingers on my blood results and shouted at me "but your results are all perfectly normal". So I let him babble on for a while as he gave me his version of what was wrong with me and then I calmly replied to him, "you have forgotten one thing, the fact that I have actually had three miscarriages, 1 PE and 4 strokes on my CT scan. How then would you explain them?" He just looked at me blankly and moved onto something else. Then when I saw him next and took my strongly positive anti B2GP1 result, he wrote to my GP saying something about having weird intermittent antibodies. I think they just make it up as they go along to suit themselves!

Please try to go to somebody who knows what they are talking about before you suffer some real damage to your brain, you owe it to yourself and your family. And let us know how you are getting on.


Are you still under this Neurologist? Do you see him on NHS? If so, that may explain...e.g. discharge you and cut the costs..


Funny you mentioned the TIA! He (the neurologist) said the hospital that I was taken to (our region's lead hospital) was not accurate to diagnose my TIA. Although I was seen by a stroke team. He said that my problems are psychological. When I told him that I was seen by 2 psychiatrist that ruled out conversion disorder he said they didn't have the knowledge to do that.


Sack the neurologist...he is an idiot.



What a horrible neurologist!!! I recognize it from 2002 or something. What is the trouble with them?. They are so afraid to loose competense or prestige .I read that APsnotFab can understand what you are going through now.

At least you have an understanding family That is worth so much .Stay on here and hope you find that doctor that "gets" what you are talking about somewhere on this planet. Have I said that there are good books about Hughes written by Kay Thackray and prof Graham Hughes?

Best wishes to you and your family from Kerstin in Stockholm


In 2005 I had a number of incidents which I thought were severe migraines and saw my gp daily for a week ending in getting an imigran injection kit. The next morning I awoke paralysed down my left side with incoherent speech. I was taken to hospital, kept in over night, given a ct scan and sent home with drs telling my family that it was a kind of nervous attack.

Last year extreme pain roundy ear/jaw (TMJ) caused an mri ordered by a neurologist. This showed a large stroke exactly where I was in pain from my attack years earlier and a number of TIAs. He spoke to a haematologist who ordered bloods and then repeat bloods 12 weeks later and hey presto a dx of APS and SLE. I have been ill for yeats and had various supplements added over last three years to little effect.

Thrombotologist took overy care of APS,neuro keeping me on his books in case of another stroke/TIA and I awaiting a rheumatologist appointment. Nephrologist appointment booked for next month as my kidneys appear to have suffered an SLE attack.

I am glad the neuro spoke with hia colleague because until then no one was taking on boatd how ill I have been for the last five years. My old GP remained dismissive of my illnesses and even called me in for an appointment to tell ke off for being referred! I hope o can start on treatment for sle but qarfarin has stopped my migraine/dizzy/slurred speech/balance problems.

Its a real problem that our health issues are batted aside. I am also very angry about my maltreatment at St Thomas'.


"Its a real problem that our health issues are batted aside. I am also very angry about my maltreatment at St Thomas'."

Hi Bonnie

Is this the Neurology department at St Thomas's you are referring to? Or ER/A & E Dep? Sounds dreadful...!


Hi Bonnie,

Interested in everything you have written. I have also had pain in the ear/uppertooth-district.20 years ago.

Warfarin stopped my neurological problems in 2011 (vertigo, doubleseeing dizziness, could not see on right eye and stabbing headache). I did not have ordinary headaches those days but Auras. Auras are the only thing and some balance problems (leftsided Otolitdamage) which I have had since 2002. The Auras were very few after warfarin but have increased this year. I still have Tinnitus but I am so used to it that I do not think of it..

Take care. Kerstin in Stockholm


Sounds familiar. My first TIA ( at least the first I sought treatment for-- turns out the brain sometimes hides symptoms and their severity from itself,) earned the paramedics who transported me to the ER a major dressing down by the ER docs as my symptoms had resolved by the time we arrived. Those ER docs checked my BP, found it to be at its usual low state, noted I was not overweight, then screamed at the paramedics for being too "easily lead!"then sent me on my way with a recommendation to follow up with my GP who might refer me to a psychiatrist, (they handed me a post it note with some suggested names.)

More TIAs followed, leading to an intervention from high school buddies who are now doctors, and who knew both me and husband well enough to know I was not making all this up. They spoke together in a conference call, arrived a a probable diagnosis as they talked on the phone, then called my husband with an offer of a referral and a free place to stay at the house of one old friend whose SO was a doc.

We went, stayed at the friends palatial mansion --( think: a house built by a millionaire 100 years ago, plus a doctor's salary and an artist's taste!) -- and I got positive blood work results and my diagnosis.

Currently, as I rant here several times a week, ( sorry ! And thanks for the patience!) my old positive blood work has been lost and the new docs at the med Ctr where I went for my hip replacement, believe I do not now, and never have, had APLS.

( of course my GP who I saw last week pointed out that my a fib is severe enough to qualify me to continue on the warfarin, so I am in no danger of having to rig up a grow light in basement to grow my own curare! LOL)

Good luck. I will PM you with the name of the heme across the river from Cinncy who diagnosed me back in 2001.

PS: another Apple auto correct funny I just found : if you enter in "dx" for " diagnose" and do not watch the automatic editor closely, that dx will be changed to " died!" so, the doc in Ky did not kill me, he diagnosed me! LOL!



go see a rheumatologist, my original neurologist told me I needed too see a psyche. it was the major turning point in my illness because I said im done with drs. then within 4 months had a stroke.


Thank you all for your support. I am staying prayerful for results and answers next week. I will keep you updated.


My fingers crossed for you next week here in Stockholm. Kerstin


Ok. Where to start. I live in California & have had my share of drs. Be wrong on my diagnosis. I have a strong history, livedo reticularis, & 1 positive antibody test 18 years ago, but now my blood is negative. So, I am seronagative. I have done a lot of research & found that the USA does not like to treat for APS unless your blood test meet the criteria.

I saw several neurologist who did not believe in APS they wanted to dx me with MS even though I did not have the symptoms. They are crazy they just don't believe in if you want to get answers & try to get better, go to London... The best thing I ever did for myself. I am going again because the knowledge of APS is very limited here in the United states. Designer16


Thank you, thank you! I have to get better ASAP! This has been a nightmare! I am checking into going to UK for treatment!


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