I had 2 TIAs and a scan which showed nothing then I had another I just collapse in a heap.My GP said you should have gone to A and E I have an appointment to see Prof Hughes in September but has anyone else had these collapses? The last one was really scary and I was very shaken but didn't go to A and E as I couldn't bare to be told its nothing again and I'm wasting people's time
Has anyone had TIAs but nothing showe... - Hughes Syndrome -...
Hughes Syndrome - APS Support
I believe I had one in 2011. I got out of bed and fell into a chair by my bed because of extreme burning pain in my right thigh. I got up and took a step and fell to the carpet. Stood up, "kind of laughing as I'm such a klutz" and my wife asked me if I was alright I said yes (laughing). I took another step and fell to the carpet again. Got up again and walked into the restroom. Started to walk out and I blacked out and fell hitting my head and landing in the walk-in closet. My wife has filled me in as I simply don't remember some things.
My wife turned the light on in the bathroom and was watching me at this point, I guess I turned around in the walk in closet and faced her on all four as I could not get up.
I crawled a few feet and collapsed to the floor. Something seriously was going on in my head and I felt at that moment I was not going to make it. She asked me if I wanted her to call 911. Although I did, I could not speak, I tried. She asked me again and I "screamed" yes only to be heard as a whisper.
I remember feeling that a need to get up and off the floor. I looked to my right and my right eye or vision was blurry as I was looking for something to hang onto to stand up. I tried pushing myself up as if starting a push up and I collapsed/fell to the floor again. This happened two more times as I did not have the strength in my arms.
I looked to the left and grabbed the towel rack off the wall trying to get up. I was able to pull my legs under me onto all fours and crawled to a chair in our bedroom.
I knew I needed to get downstairs for when the paramedics arrive as a gurney up our stairs would not be easy. I sat on the couch as they arrived quickly.
They started asking me questions and I noticed I was slurring my words. I told them this to bring it to their attention.
Arrived at ER and they advised me they thought I had a "syncope incident". I was released with a BP of 66/46.
My neurologist who I think "does not believe in APS" says I have not had any strokes. I do not believe syncope reacts as described above. I believe I also had a TIA in 2010 while in ER.
Not sure if this helps.
Yes, thankyou it helps to hear other people's experiences
I can only speak from my own experiences but I have recently been told unless an APS specialist is looking at the results of your MRI they can miss an awful lot because often the white matter only appears as microscopic dots. These are often dismissed as not important by non specialist doctor's who don't know what to look for.
I had my first stroke 2003 (Dec 3d!), the hospital scanned (CT) immediately... radiographer said THEN it was a waste of time because it doesnt show up for 2-3 days!! Every time I have another incindent they scan immediadely, discover old damage (each worse than prev scan) & tell me I havent had another, keep me in a. Few days & I go home - except that first one. They sent me home, even though I couldnt move my limbs on my rt side, to be at home, alone with my toddler for Christmas...
Hi I can't even imagine what you went through alone with your toddler following a stroke unable to move your limbs but sent home! You have been through a terrible time, I hope things at the moment are a little easier for you? Thankyou for all your information
Tell Prof Hughes and if possible get a copy of your MRI images. He will look at them and tell you the truth. Ask now for copy will prob take a few months to sort out. Good luck xxx
I think you have had some good replies that seem to confirm my thoughts on this problem. The results depend on three factors, the quality of the scan, whether a stain was used ad who reads the scan. I had had an MRI that the radiographer (the one who performs the CT or MRI) told me it showed white matter lesions, but not any sign of a current clot, which was OK as it did take 3 months to get an appointment for the scan. The Radiologist (the person responsible for reading and reporting on the scan) looked at it and said the same. The Neurologist looked at it and sent a report to my GP, who had requested the scan, which read that the scan showed no sign of ischemic events.
A year later a new Rheumatologist looked at a digital copy of the scan sent to him and he showed it to me on a large screen. He took a long time showing me the small white dots that looked like a star constellation within the white matter of my brain and explained they could possibly have been caused by micro-clotting events and were not difficult to see.
Most doctors should be able to see that the results of a CT scan and a CT scan are totally different in colour or density and that a CT will be of little use with any form of micro-damage to tissue, which is why we should have an MRI with a stain to emphasize any damaged blood vessels, it still becomes difficult to differentiate lesions within the white matter, but should be able to be seen by a trained professional.
I also suffered the infamous and debilitating thunderclap pain - on the left side of my head end of March 2010 while at work. There were several of them actually. Vision in my left eye went fuzzy, and I suddenly became super sensitive to fluorescent lights - crucially, I started badly mispronouncing words I'd known all my life. I shook like a leaf and struggled to stay on my feet. They wanted to call an Ambulance but I told them not to and to take me home instead (big mistake!) and they did take me home..!!! (At that point, I really wasn't all there). It was another 2 days before still groggy I stumbled into a walk-in-clinic still very unwell and was redirected straight to CMH A&E. On arrival, I was in a bed within 3 minutes. I was in there for nine days. MRI Scans revealed nothing! A lumbar puncture did reveal some distinct (protein?) anomaly in my Cerebrospinal Fluid but it was never followed up! After that, I was off work for a month. Those thunderclap headaches were horrendous! Never had them since though, luckily. But TIA's continue.
Hi thankyou I didn't realise that it only shows up a couple of days later
This website is the best as someone always knows an answer no matter what the question.You all do an excellent job
My scary road to diagnosis was very similar. After slurry words and one side paralysis (which had partially resolved by the time I got to the ER) I was sent home and the ER doc chewed the ambulance staff out because they "obviously" had allowed me to "fool them" into thinking I was having a stroke! (Aren't I the talented one? Why didn't I go into acting?) (And would somebody please explain to me my motivation to do this? Its not like lieing a gurney in a drafty hall in an ER is an uplifing experience.) (OK. I"ll try to shelve the sarcasm. I'll try.)
MRIs, X Rays, subsequent ER visits -- Finally there were several phone calls among concerned high school friends who had become doctors. Since they knew me personally, they knew that: 1, I can't act worth a darn, and 2, I was leading a near perfectly blissful non-stressful life and was very unlikely to be psychosomatic. These physician/friends arranged for me to make a 5 hour car journey to a hematologist in an adjoining state. My friends saved my life.
My lesson from all this? If a patient presents with confusing symptoms its all part of some devious plot on the part of the patient to . . . (here the logic breaks down) . . . enjoy some uplifting time lieing on a gurney in a drafty hall? . . . sue the doctor for . . . . something? . . . . annoy the staff? . . . . maybe, turn on a concealed recording device while you're on that gurney to tape dramatic stories from other patients around you in hopes of finding good short story material? . . . get fashion ideas from comparing the various hospital staff scrub designs?
-- stil haven't worked out my own devious motivations here. Help?
Hi I can fully understand what you have had to endure , luckily you have retained an excellent sense of humour!! Thankyou for sharing your experiences
haha omg your like my twin that's exactly how my 4 visits have been except i'm a trouble maker looking for attention according to 1 er dr. I was like yea i wan't to come see you i have nothing better to do then be going back and forth from my nursing home rehab and see you.
i'm having the same thing kind of i've had 6 or 7 stroke like attacks in 2 weeks time i have sle lupus i'm 26. i took gabapentin for nerve pain and the next day started having the shakes really bad and more seizures that were harder to wake from cause they were back to back. then later in the week my head and neck started twitching my speech became slurred and couldn't swallow lasted an hour went away. then friday had my first full on attack had a 2 or 3 hour seizure and when i woke up couldn't talk, my face was drooping on the right, couldn't swallow, couldn't move my right side at all, and my writing in the left hand was starting to get sloppy and very hard to think and couldn't open my mouth to eat completely numb. went to hospital blood pressure was 192/100 and was seizing bad they sent me home around 3 am i was able to talk normal and move my arm and swallow writing didn't get better but my right side did.. next day same thing happened writing and thinking worse like my brain was slowing down my speech slurred couldn't move again. next morning my vision was affected the right side was darker and blurry my eye wouldn't open all the way and i was running a fever of 101.4 so went back to hospital did mri said everything was normal but still having these attacks everyday no answers.
So sorry to read this. Are you anticoagulated? If you have hit a diagnostic dead end I would suggest going to what a lot of doctors would call " the dark side" which is functional or personalized medicine.
And yeah, us Hughies-we 're a crazy bunch who find meaning and purpose in life from manufacturing stroke symptoms. ( By the way: would you mind telling me how I/we do this? We could patent the procedure and we 'd all be rich in a matter of days.)
i may have i had 27 tests done from rhuematalogist and i think that might have been one i'll have to go back and look. And lol idk i guess we just wake up and say i think it's a good day for a stroke havent visited my favorite people in a while lol sorry just cracking me up.
so it looks like it's all negative but since i took that medicine other things that were normal have gone high or low so i probably should be retested for everything.
Hi, Sorry you are going through it, I see you have just joined, welcome, do you have a diagnoses of APS/Hughes?
You have replied to an old post, can I ask you to tell us more about yourself & where you are based, this way we may be able to direct you to people near you.
i'm from maryland and don't have the best insurrance so that's another problem i have. i have a lot of problems seizures fatty liver disease ashtma scoliosis stenos degenerative disc disease 4 or 5 bulging discs, memory problems, auto immune disease, sle lupus, memory problems and nerve pain and thyroid problems.
I know the others have asked you if you have got a diagnose of HS/APS? I read that you have SLE/Lupus. Is it Lupus Anticoagulant you mean or is it the illness SLE (also called Lupus)? If you are diagnosed with Lupus Anticoagulant twice you also have HS/APS.
For my ears you have TIAs and a lot of them even a stroke perhaps. I suggest you put a new post on hear as you have answered a 4 year old question. Your symptoms are a bit uncommon with fever and numbness on both sides of the body though.....
What medicine did they give you?
Best wishes from Kerstin in Stockholm
my ant dsDna antibodies last time checked was 33 in august and my c reactive protein was high to and a few others i have a lot of other problems the numbness was before the stroke like attacks happened. been unable to walk since may got super tired out of no where end of shift couldn't stand up husband had to help next day slower then a slug and after that couldn't walk and was extremely tired and went incomas and since have lost the function of my legs and strength and always weak and no energy and then i took that medicine and the stroke like attack happened almost every day. where do i post my question?
Click on the "Home" page (with the red clots or what it is) and look to the right hand side "write a post" (in green) Click on that. Hope i could help you with this.......
Who diagnosed you with your SLE/Lupus? Could you find out if you have positive antibodies twice :
Anticardiolipin antibodies (aCL)
Lupus Anticoagulant (LA)
We need to thin our blood with this illness (HS/APS) and therefor we need a Specialist of autoimmun illnesses who has had patients with this illness before so he knows what he talks about and can understand you questions and give you the right answers and treatment.
Good Luck from me!
Kerstin in Stockholm
I woke up one day unable to walk, with left sided weakness, a headache, funny speech. After a few days I went to the docs who sent me to hospital where I had a CT scan and I spent 2 weeks to be told nothing was wrong. !!
I had to go through rehab to be able to walk again and improve my weakness.
It happened numerous times again, but as I was told before that nothing was wrong with me I didn't bother seeing a doctor.
Ten years later i got diagnosed with Hughes, I quite often think I am very lucky to be alive.
Before being diagnosed with APS I had more tia's than I can honestly count (was having up to 6 a month) and had a stroke in 11/06. The story belongs in some horror novel, and we've already read enough of this. I am fortunate because although it did leave me with small deficit, and I could have died, I am basically ok. My MRI shows multiple white lesions and the radiologist reports that this is normal for someone of my age. At the time I was in my 50's and no one in my family had any history of stroke. My neurologist has me down as a 'migraine / trigeminal neuralgia / seizure' patient and treats me accordingly for those conditions. Although he acknowledges that I have APS he doesn't seem to think I have had tia's or stroke, but he doesn't say so.
Because he is giving me the medicine I need I don't say anything. It is, of course, a travesty. My APS is being treated separately and has nothing to do with him, but the medical profession will someday look back on these days and realize how very little they knew about APS. I also feel so lucky to be alive but know it is also my own research which stretches beyond the closed minds of the medical profession.
Hi thankyou for sharing your experiences with me it really helps
Yes. I had numerous TIA's within a few months that did not show. I also had braces at the time which interfered with the images but doc still said there was no evidence of TIA. I then had the thunderclap sudden headache, went to ER and had CT. I was told it was normal and that I had a migraine. Don't buy it. I've had migraines for 30 years and I have never experienced anything like that in my life. It was like a switch was turned on and I was vomiting too which I rarely ever do with a migraine.
I believe I've had a few TIAs only gone to hospital with two, one in 2008 and one in 2009. A &E said TIA and I've been seen my rheumataologists, I've been told that I have vasculitis, lupus and APS and I'm treated with the usual azathoprine, steroids and annual rituximab also had one lot of cyclo back in 2009. My MRIs show some things but I've been told my neurologist that they are clear but rheumy has said there is something there. Neuro says I've never had a TIA but rheumy and A&E drs when admitted say I have. To be honest I think that they don't really know and we all seem to get different answers. Last year the neuro wanted me to have cyclo again and they were going to give it with the rituximab (I felt anxious and originally said no but then changed my mind, I didn't see my normally rheumy and they said no). My normally rheumy then wanted clarification from neuro of my MRI and he sent me for a new one. When I saw him after the new one he said there was no change from last one, when I brought up the cyclo he acted really shocked as if he wouldn't have said that. He looked back in my notes, found he had and then said that my MRI shows no active vasculitis so no need for cyclo. After I got out I thought "but if the MRI us the same as last one why did he want me to have it last year?".
I go to my appointments and come out with more answers than when I went in!
Sorry I've not helped you but I think maybe they are Tia's that we have as they present like that.
I think I might be having TIA's (between 2 and 6 a year for around 15 years) I usually refer to them as 'episodes' . I get a weird feeling that I don't have any words for a few hours before it starts - which is nasty, but useful. My vision and thoughts blur quite badly (something I suffer from regularly though) and then I feel extreamly drunk, slurred speach and inability to coordinate. Fortunately, my brain gets numb (can't think how else to describe it) before the pain really kicks in, I'd describe the sensation as having half of my head cave in (although its the right side, while many people are saying left?)- that's about when the fun starts. Although I've never vomited, the urge to is so strong (and at this point I don't remember anything- immediate physical needs over ride all) I drag myself in to a bathroom. And I mean drag! One side of my body stops working, the other is just week, so its a kind of knee and toe push along the floor. I'm burning by this point, and the promise of running water seems to make it worth while. Luckily, I usually black out before too long, and come round to find myself with pain like an intense hangover, one side of my body numb and week (but will move if I consent rate) an inability to speak and my (usually right) eye functioning so baddly I need to keep it closed. I also feel relieved, ad this is better than before. Lots of missing time, and it takes a couple of hours before I can crawl out and find a bed.
I don't know if this is a TIA, but from the first time it happened (without any knowledge of these things) I believed my brain was bleeding. (I have considered some type of epilepsy, which doesnt make total sense, but I don't know) As I can't call for help, few have been witnessed. Although once I endured waking up to be slapped by my mum who assumed drugs! Various doctors have sent me for ECG's CT's and MRI's all totally clear (one even sent me an appointment to an alcohol clinic).
The general consensus- I'm making it up. I do have a good imagination, shame I don't put it to better use than scaring myself silly
Hi thankyou for sharing your experiences it helps
I also had a TIA that failed to show on the MRI (which was also performed immediately). I was actually in denial and surprised that they ruled out migraine and instead went with the TIA diagnosis.
I think the fact that I had total blindness, and was transported via ambulance to the hospital (thanks to my coworker's insistence and quick action) helped give me credibility. It wasn't until they gave me the stroke assessment, and I couldn't remember simple things, that I realized something was seriously wrong.
All this was prior to my APS diagnosis, and eventually helped in forming the missing puzzle piece to getting the ball rolling on my care. The doctors did tell me that they didn't expect to find the clot, so they were just doing the scan as a precaution.
I have had TIAs in I know I have had one at work and I have had one on Boxing day 2011 and one in hospital that time I was told I was drunk, not sure how I could be drunk as I dont drink, they don't often show up on CT scans though I have a lot of white brain mass scaring, have left sided weakness, slow to talk, head pain that it would give child birth a run for its money, fed up on listening about migraines as migraines don't last as long as the pain that is like little camp fires in the right side of my brain. I was sent home from work because I was in so much pain.
Similar experiences to you all, neurologist in mid 1990s said my condition was "biochemical". Later Rheumatologist diagnosed APLS on top of SLE. Showed me where "abnormalities" were on MRI scans.
Have been back to a different neurologist since then (GP referred me for neuropathic pain), but how convenient it was for him that my previous neurology notes had been sent to the old notes archive. Otherwise his senior colleague would have looked bad.
Also don't ever avoid seeking medical attention in case you look like you are wasting anyone's time.
Always consider your case as if it was a dear friend or a child. Would you avoid taking your dear friend or child to seek medical attention?
Have had 3 TIA's. Starts in left side forehead and travels down to left eye. Last one I managed to stop it by vigorous massage to forehead. 2 CT brain scans showed no signs of TIAs. Doppler test was positive which shows I have vascular and arterial disease. Veins have become weakened because of all the migraines. Went to A/E which is why I had an ppt. with stroke clinic. I know you feel a fraud and you spend hours there. I don't know what the answer is.
Im shocked to hear all the stories similar to mine. Although they all differ, yet many commonalities.
I too have had multiple TIA's; so ive neen told u.til this year I. April and again in May. Lest then a month later.
But in April, I ernt to a different hospital and there I was told I did not have a TIA, although facial abnormalities showed stroke like symptoms, but the fact that the lower part of my body did not fit a TIA. Regardless of the fact I had weakness in my lower part of my body. The day before I was 5.3', the day afterwards, I woke up went to stand up but almost fell, I tried again.and almost fell again. I felt like my equilibrium was off. Made my way to the bathroom holding onto the wall the whole way. However, on my way to the bathroom I felt the upper part of my waist dropped into my lower waist. I dont think anyone believed me. Now that I think about it; I think that is why they say I diddnt have a TIA or stroke. So after a couple days in the hospital, they said I had Conversion Disorder (Mental Illness) Smh! So when I was riding back from a wedding; my daughter driving. I woke up inable to speak, starring out the window for about 2-3 minutes, went back to sleep. Then about 15 minutes later, I woke up and said to my daughter "somethings wrong with my right arm", she said smile, and my mouth was twisted. She asked if I wanted to go to the hospital took me to the hospital which was about 45 minutes from where we were I can barely walk in the hospital almost Binny's Twisted mouth could barely move my arm my right arm so weak. After workup, CTScan and MRI, I was told it was not a stroke or a TIA. 2 days later they said I had Conversion Disorder. After 4 TIA's, they now think I it's all in my head, stress related. Regardless of the fact that I had nust left a beautiful stress free wedding/reception. Tearing up right now! I've had and was treated fo TIA's 3 years in a row. And now I'm crazy, made it up in my head.
I was told for years that TIA's show up on MRI within the first 2hours after symptoms occur. Now I'm told at a different hospital that aMRI can show signs of any TIA 5 years later. And they say I never had a TIA. How puzzling and crazy that sounds. Why do Doctor's lie.
I'm praying for those people. Thinking about fileing a lawsuit.
i feel you i'm in the same boat i had mri and catscan both normal and had 6 or 7 stroke like attacks in 2 weeks time. i just got out of hospital yesterday wouldn't tell me what's wrong i saw a physchiatrist didn't want to but did and he said i have no answers for you right now so who knows what they diagnosed me with i have a ton of health problems. i'm sorry you went through that i have been there many times if they don't know what's wrong rather then run more tests they try and say your crazy and slap a diagnosis on you don't let them bring you down.
I too have exactly the same experience as most of these stories. Started off with balance problems - doctor thought I might have an ear tumour. Mri came back clear but due to my issues the ENT consultant referred me to a neurologist. In between waiting for appointment - I had 3 days of veering to my left and my words were coming out wrong. The neurologist ordered another Mri due to the change but when the films were sent to my local hospital (went elsewhere due to claustrophobia and had an open mri) they couldn't open them but written report noted a lesion on right side of brain ? Small stroke or small vessels disease. Fine until June 2016 - scan was Jan 2016 - came home after shopping with my dad - talking away then suddenly couldn't speak properly - stuttering and slurred. Went to hospital - ct showed no stroke so sent home. Still cannot speak properly - get fatigued tiredness insomnia etc - now being told it is all in my head!!! Have since blacked out twice and reluctantly the GP - due to request of A&E doctor has referred me to the neurologist with the words he may just confirm what the stroke consultant states 'it's a functional stroke ie all in my head'
Like everyone here I am frustrated to high heaven. I think I had a tia in June which I am sure affects people when they have one differently - mine being speech and memory. Also my reasoning is how come the stroke team when I explain my symptoms - tiredness etc as above state these symptoms are quite common when people have had an incident. I have never had a stroke before so do not know what the symptoms would be. As someone stated on an earlier post - I must be a damn good actress or have ESP to know how to play at having a stroke!!!
Appointment in April 2017 - will keep all updated xx
Hello Monty 111.
I was reading most of stories on this page but unfortunately they were all from four years ago so I don't know if the members still comes to this page or read the new posts. But I saw that you've posted around mounth ago.
So I thought to ask for your help.
I am 37 years old female that had weird episodes with no answer.
Around one year ago I experienced something that I never had before. I was sitting in the classroom listening to the lecture I was playing with my hair and trying to untangle the knocks that accidentally I pulled some hair from behind of the right ear from the bonny part. Then out of the sudden I felt tingeling, numbness and warmth covering me from the head and going to my legs. It gave me passing out feelings I was passing out but I still could see and hear the teacher so I cried out for help beacuse I was thinking that I was passing out. Luckily my sister was sitting next to me and told me that I cried to loud that I scared everyone. That episode was just for few seconds and I was ok. Right away we ran to the health center and the dr checked on my nerologycal functions and other routine check ups was done. Then he sat back told me he could not find anything wrong with me. Then the second incident happened to me while in the bed. I woke up one morning feeling ok but when I turned my head I heard something burst in my face it was like a bomb. It made me blink several times out of the shock. Then I tried to sit up but in that moment everything went slow in another meaning I went into slow motion mood like movies. I cried out to my mom and she ran to the room and immediately I felt ok. This time I ran to my own dr and he also check on the nerologycal functions and routine checkups. Everything was normal and he also told me that he doesn't know what happened to me.
But I pushed for MRI which he finally agreed to.
And here was my result.
But none of the doctors including five neurologists that I went to didn't take it siriously. Beacuse in thier offics they only checked on my neurological signs. And when they are normal they dismiss the findings.
Here is my MRI result
Findings: Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In pationet of this age, these are atypical, and could be inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion.
Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised.
My MRI was without the contrast.
So I really don't know if o too suffered from TIA or not beacuse whatever question I brought up to all the doctors they dismissed them right away. They even told me that none spesefic white spots findings are kind of normal.
But after two mounths of the brain MRI and that morning incident. I began having eye issues.
It's been nine mounths now that I keep seeing black shadow in both of the eyes upon my moving or laying down. They appear if I bend down, or read book, write book, or even eat. I see it I lay on my back as well.
I just did neck and back MRI which showed nothing. I also saw retnial specialist which could not tell me any thing. But I think that morning incident would have caused damage that is not visible to the scans. However, I am due to do MR angigram of the neck and the brain but witout contrast. Also another Brain MRI but I really don't know if they will show anything at all.
Forgive me for such a long post but I wanted you to have picture.
I am dealing with unknown.
I think you may have come to the right place here. I guess that you are 21 years old but you have not told us in which country you live.
The same story happened to me some years ago (15 years perhaps) and the Doctors took bloodtests on me and found I was postitive to 3 antibodies that pointed to an autoimmun illness called Hughes Syndrome/APS. They could not find anything wrong with my brain and my eyes and my balance etc etc. Several years later I knew that I had microemboli or TIAs that were so tiny that they were not seen on a Scan of today. I saw double, had Vertigo and the room was spinning to the left, I lost the sight in my right eye for some minutes etc etc
I was first put on Aspirin (75 - 100 mg ) but later I was worse with memory-issues etc and had to start Warfarin. After that the neurological symptoms disappeared. Anticoagulation was my lifesaver. It is recognized to be the treatment No 1 priority.
What is important is that you meet with a Doctor who is specialized in Autoimmun illnesses. This is a rare and rather new illness (1983) and so very few Doctors around the world know about it. The Neurologists usually do not "get" that it has to do of too thick blood that has to be properly and stable thinned. Usually it is the Rheumatologists who are specialized in these illness as it is a reumatic disease.
Please stay with us here and you will have other good advice from our members what you could do in your position. But it could of course be something else that gives you those symptoms but I must say I am very suspisious. You could perhaps ask your GP if you could try baby-Aspirin and see if it makes you feel better. A small dose is enough and take it with food as to stomach-issues.
I would advice you to put up a new post on our site and tell us a little more about yourself. I think you should get better and several answers that way.
Best wishes from Kerstin in Stockholm
Thank you so much for the respond.
Hope you are doing well after taking the medication. I was reading your symptopms and what happened you and I was thinking if I had a same thing.
I remeber when I had those incidents I did not go blind, or felt down, or had slurred speech, or facial driving or anything like that. I was reading on TIA symptopms on Google which was saying that the TIA's symptopms are very similar to the actual Stroke symptopms.
The interesting thing is that whatever happened to me was beacuse I did something. I mean it didn't happen on its own. For instance, the classroom incident i think it was beacuse I was playing with my hair and trying to untangle some of the knocks. The moment I pulled some hair out accidentally I felt that sensation coming over me.
Or in the bed incident again I was ok when I opened my eyes but y Phillips was badly jammed under my neck. So when I turned my head facing the ceiling I heard that bomb like sound in my face and head.
So here I get confused that was it me doing this to my self accidently or I really suffered from TIA's.
I read this now and I have just answered your message.
Perhaps it is not Hughes Syndrome (could be anything else) but at least I think you should ask for those antibodies I wrote about to be taken to begin with and also think about if you have got some relatives with similar symptoms. Hughes may run in families. How long time have you had similar strange symptoms?
Others will answer you also I am sure. It is a tricky illness
Thank you Lure.
As of my family none have this syndrome. I've asked them all. About the incidents and everything else it begins from last year. I was going through all the past years blood works. And I just find out the on the year of 2014 I had verity of the blood works. One of the was Cologunt test which was 13.0 and next to it says H. But it didn't say what should be the reference range.
So I don't know if this is an alarming flag.
I found my original post.
So the blood works that I write to you were not the ones to check on blood clot isuesss.
Urinalysis with culture and reflexive urine culture were normal.
Lupus 12 panel, Antiphosphoipid antibody panel,
Lupus Anticoagulant W Reflex, and ANCA Screen with Reflex to Titer were all in range.
So I don't know what will be the next test to do. I just know that I'm not lying and I truly have the symptoms.
So are those shows if I have blood clotting isues? Did she really checked on everything?
If some one has the syndrome of the blood clotting will it always shows up in the lab tests?
Should I ask for more blood works?
It's really hard to find a Dr to listen to you I had a huge argument with my GP just to get referral to see the rhumeotalogist. Then I've explained to her everything and she told me not to worry and she'll check on everything within her limitis.
The Redon I've posted the names of the blood tests beacuse I've never heard about them they were not s routine tests it took one week to get the results from the lab.
Thank you Lure🙏
I am sorry I do not know exactly what bloodtests you talk of.
Hope you have a Doctor who understands Hughes Syndrome.
The tests required for a diagnose of Hughes Syndrome, twice done and 12 weeks apart, are as follows:
Anticardiolipin antibodies (aCL)
Lupus Anticoagulant (LA)
I think she did
Which was negative . But I'm not sure about the rest.
What does it mean when your first test comes back positive for all 3 but then 12 weeks later the follow-up test comes back normal? Should I just ask my hematologist to test again? I'm 42yo and I've had several confirmed massive DVTs and 2 PEs so Im taking Xarelto 20mg daily forever as well as aspirin but it sure would be nice to know.
I came here because I was just hospitalized with my 3rd TIA but they said the MRI looked fine. My wife and I tried to argue that confusion, memory loss, difficulty speaking, inabilty to get out the words I wanted to say, inability to stand or control myself etc. weren't normal for me and I was just positive their was something wrong with my brain but couldn't explain myself. The ER doc ignored me; very frustrating as I know I'm not imagining things.
The best thing you can do is to put your own question on our site.
Then you will get several answers as now you will only get one answer perhaps only from me.
You are new here but also tell where you live as it is exstremely important tohave a Doctor who is specialized in our illness and other autoimmun illnesses.
This illness may run in families so if you have relatives with the same symtoms and if you have got "events" as you obviously have (DVT and PE) you should have a diagnose even if the second bloodtest is not positive. The antibodies can go up and down and many here are sero-negative for some time and later on positive again.
I doubt that Xarelto is the right anticoaglationdrug for you as it is only ok for people with venus clots under an INR of 3.0 I believe you need a stronger drug for your symptoms but never ever stop anticoagulation without talking with someone who understands Huges Syndrome.
I can tell you that I had those symptoms you had before Warfarin. Now gone. You are not imaging things!! I can tell you that I had also micro-emboli that were never seen on a Scan (other members have that also).
Well now I have been "taking" but I think you should put your question here and tell where you live and you will perhaps get a suggestion of a Doctor who is a Specialist.
My best wishes to you and your wife from Kerstin in Stockholm-
Read "Sticky Blood Explained" by Kay Thackray!
Should be "talking". The book is not quite new but she has go HS herself and writes about the different symptoms and it is a very good book to understand how it is to live with this illness. Other members like it.
I collasp 3 weeks ago after having numb hands and feet for about 5 days before and the day off vertigo .. i could hardly walk.. then coming back from the bathroom it felt like a bolt of ligjtening striking from the floor up my legs and then stopped in my lumbar spine. I dropped and didn't know if i passed out or not as i was alone. Going in and out of blacking out i called er. They said i was fine. By then i was. Terrified but fine. My MRI just came back normal. The MA said it was just one of those things. Gee thanks!
I see you joined today on our Forum. We all have Huges Syndrome/APS on this site which means we all have too thick blood. Are you diagnosed for this illness?
I do not know where you live but if you tell us your story of symptoms and bloodtests and Doctors you have been to, we may help you, as what you have told us is not acceptable and should be looked at by a Doctor by all means. Did you get something in the hospital for your symptoms?
Best wishes from Kerstin in Stockholm
I didnt know this was hughes forum wich Im not diagnosed with , but I did have a near fatal incident when i was abroad..(I am Dutch)..We dont know what happened exactly but I lost the feeling in my body , had sudden vocal cord paralysis and have been more or less unconscious for four days in a hospital in the tropics after eating something wich was not what I thought it was ...(I thought it was a chocolate but it appeared to be filled with eather hash or weed.causing all this to start...strangely enough..)The fact that I had a motoraccident landing on my head three months before and just came back from yet another flight might have contributed. being intolerant to such a "chocolate"....After than waking up in that hospital completely dehydrated i was still more or less myself...again...Unfortunately they did let me go and within a day I had something similar..lost control of my body ,all feeling in it and couldnt feel my body anymore.this time a fever came with it, inability to move my neck and paralisation.they couldnt find what was wrong apart from a sup[posed viral or infectious disease .( lyme anti bodies found years latrer...might have been a trigger, i had a motoraccident might have been it and I carried some leptospira wich is a rats disease(I was in the tropics) might also have been the reason..i never found out, they kept sending me to other hospitals and testing but nothing showed up apart from possible leptospirosis..but not even much visible...they did send me to the village again where my heart simply gave up after racing for a full month,,, could not hold balance, blacked out all the time, and could not feel if i was breathing(paralised vocal cord)I even fainted in my bed ....doctor in the village noticed sudden drop of bloodpressure..next morning I nearly died(alone)so no proove..blacked out fell on my face three times heart was insane and everything became black and I had a full near death experience..leaving the body etc...They send me back to my country in a wheelchair and nothing ever could be found although my full body was not functioning as it should...I was not taken seriously after some time although I could not stand noises anymore ...drink a simple cup of coffee or a glass of wine all impossible...had so many seasures and fits for at least five years ,almost weekly and no medicine..nothing ever returned to normal.i had scans where they saw some ,myeline nerve damage ..a sort of lyme pattern in the brain..but if it was lyme than why did all the symptoms occur after my incident where I was unconscious in the tropics.every single complaint began just than.I am hurt by the lack of empathy ...literally falling into specialists rooms in the hospital and them asking why ???telling me the only way to get more air is simply remove the vocal cord since its in the closed position(the paralysed one!!!!!!)or talking of hyperventilation when I was taken by ambulance to a hospital in the Netherlands when I could not see anything at waking up and had a heart racing like mad....my mouth slightly out of place????????very sad when even my parents ask me than howcome its possible that sometimes symptoms just dissapear..sigh..alone fighting this....an intelligent woman who lost the years between 44 and 52....to this horrid thing.its even more difficult now when many days I can cycle and dance around and others I am like a handicapped person..people dont understand it..and neather do I.It must be braindamage.
plus...in my family there is a bloodcoagulation disorder wich i wanted to have checked but the doctor said there was no indication for testing from what he had seen so far..no bloodtest pointed in that direction he said but we never tested specifically for that disease????????
Hi, I see you have joined today and as you are not sure that you have got HS/APS i suggest you find out and then come back on a new post here on our site.
This thread is too long as it is and also started 4 years ago.
This site is only for people diagnosed with HS/APS.
Hope you will find an answer and I wish you Good Luck!
Kerstin in Stockholm
I believe I had Tia 2016 February and Mri scan was clear ! I have got Graves' disease almost 8 years .my hands suddenly was numb my face was red boom hit me ! It was only 2 minutes and my tongue was shaking ! Make me crazy stupid doctors doesn't believe me ! Make me crazy ...
I have read that you have got Graves and the Doctors do not care much about your treatment.
I would suggest you ask your GP to take the three bloodtests for HS/APS and if they are positive look for a Specialist of autoimmun illnesses who has time to listen. I have seen you are on our site here for Thyroid-issues which is said to be very good.
Read also of the symptoms of HS/APS and think back if someone in your family have had autoimmun illnesses earlier.
Best wishes from Kerstin in Stockholm
Thank you , i had Tia ( mini stroke ) 10 February 2016 I can remember exactly date ! My GP doesn't believe me because my Mri scan was clear ! Thyroid specialist doesn't believe me even neurologist doesn't believe they think I'm mental unbelieveable I fed up NHS systems and doctors I give up now I'm going to Europe for treatment ! England NHS system nightmare and rubbish .....
If you have APS/HS you should test for the three antibodies. You say the MRI-scan was clear and that can be the case if you have got micro-emboli like I have. They understood finally when I tested with Warfarin as I was so much better at once. We have difficulties with Doctors who do not know our illness.
How do you know it was a TIA? Have you had the neurological symptoms several times. Perhaps you have already tested the three antibodies twice with 12 weeks at least between the bloodtests.
I started with baby-Aspirin and was better but later on I needed Warfarin. You could perhaps try with baby-Aspirin and see if you feel better. 75 - 100 mg is enough once a day with food.
Hope you will be ok!
Kerstin in Stockholm
Thank you, doctor told me I had Tia ! I told him my symptoms he said I'm sure you had Tia ( mini stroke ) ok thanks
U.K. NHS system they don't listen to patients mri scan was clear doctor said nothing I can do goodbye ....I had Tia February 2016 .mri scan was April 2016 even 6 years old know after 2 months you can't see anything because it was only mini stroke (Tia) .....thanks for help ...
I see you have been on the Thyroid-site. This illness (Antiphospholipidsyndrome/Hughes Syndrome) can often go parallell with Thyroid-issues and also Sjögrens syndrome (like some sort of cousins).
The only possibility for you is to test for the three antiboidies (ask you GP to refer you for bloodtests). They are:
Anticardiolipin antibodies (aCL)
Lupus Anticoagulant (LA)
Do it at a hospital as they are very time sensible.
Good Luck with this!