I stumbled upon this site during my search for options and I could really use some advice...
I am a 22 year old active female and I have recently suffered through two episodes of what seems to be like a stroke but I am unsure. I have no health issues and I am very active involving rock climbing, hiking and pole sport.
A couple of weeks ago after dinner, I noticed that I couldn't see out of my right eye properly. I couldn't see at all and when I looked at people all I could see was half their face. My mom and I thought it must've been a spasm or something so I went to take a bath to see if I could relax. During this time I started to feel very dizzy and nauseous, I noticed that I was struggling to read my phone messages and reply by mixing up words. Not long my arm started to go dead, it felt heavy and was very hard to move. I had pins and needles in my arm. My mom decided it was best we go to the hospital. While getting ready my mind went foggy... I remember that my leg soon went dead and I was struggling to stand, when my brother came to check on me I was apparently mumbling how I need to lie down but I couldn't speak properly My tongue felt completely dead. When rushed to the hospital, the whole ordeal and subsided and I was just left vomiting and with a killer headache. My blood pressure was fine. So the doctor said I must have had a bad sense of vertigo due to a chest infection. They did a chest x-ray and it came back clear, they then decided it was due to a hernia... which they didn't even know I had and I was sent home. I was a bit out of it for a few days, very stiff and drowsy but eventually was fine and I forgot about the whole ordeal. Now about a week and a half ago I had a dance shoot and at the end while we were all getting ready to leave I noticed that I couldn't see out of my right eye. We had come to the conclusion this must have been caused by stress and was some sort of panic attack. I called my mom and she told me to take it easy and relax. I eventually left with my right eye still not working. On the drive to my boyfriend I felt very out of it and soon my leg went dead, I was struggling to move my right arm and turn the wheel but I some how made it to his house. I tried to send my mom a message but I was struggling to type and read. The next thing was a headache, it was so painful that I was struggling to move my head, it felt really heavy. Soon I lost the ability to speak and was just mumbling incoherently... I was rushed to the emergency room again and my blood pressure was still fine. I had the worst headache of my life and was ... I was sent for a CT Scan and it came back clear. The doctor found an ear infection and it was decided that was the cause. I was sent home with antibiotics.
My parents and I were concerned and it was decided that I will be going to see a specialist. I went there on Monday and she said it could have been a TIA but she doesn't think so because I am too young and healthy, it was also found that I was close to being underweight if my BMI dropped anymore, I am sitting at 21. She ran a bunch of blood tests to see for any autoimmune diseases or diabetes. Everything came back clear.
We are wondering if it is worth going for the MRI if everything has been clear... My parents are convinced this is caused by me not eating enough food. I like to think I eat enough sometimes 4 meals a day with 4 - 6 glasses of water today. My doctor said she spoke to the neurologist and she said it could've been bad dehydration or a headache...
So I am at a lose for the first week after the headache I suffered horribly with dizzy spells and even though the dizzy spells have subsided the headache has not. I have had a constant headache, though not a bad one just one that hasn't lightened up.
So I am very confused on where to go with this and what to do...
I would love some advice please because I feel so lethargic after this happens and slower, almost like I am struggling to talk at times.
Let me know what you think?
Thank you
Written by
AllyFern
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Hi and welcome, firstly well done on writing all this and asking for help, are you in the UK? If so we have a list of recommended specialists under pinned posts over on the right hand side of the forum. If not in the UK we also have some on our charity website, on the website you will also so the THREE blood tests your GP needs to do, you can show them the website. ghic.world/
While testing it is important as well as those three blood tests that you get your thyroid checked, alongside Hughes Syndrome/APS it is not unusual to have either a fast or slow thyroid, (hyper or hypo thyroid), and often this presents with thyroid antibodies, so your GP needs to look at your antibodies not just the TSH test. Also your levels of D, B12 and Iron. You must go to hospital immediately if you have those symptoms you are mentioning above, and be armed with the charity website and the blood tests! ghic.world/hughes-syndrome/...
Also write out your medical and family history in bullet points. Often if Hughes Syndrome/APS is in the family, other relatives past and present will have other autoimmune diseases including Thyroid disease, also heart attacks, and strokes at an early age, plus if female miscarriages and stillbirths. Any doctor can test for this, but the trouble is they see a young person and think it is not possible that they have had a mini stroke/TIA etc, so they need to think about testing you. Mary F
Thank you so much for all that information, no unfortunately I am not in the UK. I did get blood tests for all that was mentioned above and it all came back clear. This is why I am feeling very lost. We have not had any issues medically in our family history, so they are ruling it off to dehydration... So we still have an option of the MRI, but I have read a lot on it and it id often that they don't find signs of a TIA unless it is happening at that point of time. So I am feeling a bit lost.
Now that even the blood tests for everything that you have mentioned came back clear, my parents think this is due to me not eating enough for the exercise I am doing but I struggle to believe that is the cause because I am a fairly healthy person and eat 3 to 4 meals a day.
I was sero negative for years and then now regularly pass two out of three of the tests and also for Lupus, plus Thyroid also. See on the charity website the seronegative section. Also one further thing, are you taking the contraceptive pill? As for some that is their first introduction to this disease. Mary
Oh wow, I can't tell you enough how much I appreciate all your help. I will make sure to bring up all of this to my specialist. This is something I need to look more into. I do have the mirena thats the only contraceptive that I am on.
You are lucky to have had a good answer from MaryF who knows this illness very well.
I live in Sweden and I recognize those symptoms you describe as some of those I also had 14 years ago and several years after that. Especially I lost my sight in my right eye and the feeling from the right side of my tunge.I did not take so many minutes before the sight returned.
I have triple-APS with high titres and the antibodies showed up at once after i had done the bloodtests twice with 12 weeks between the tests. They were TIAs and I started with baby-Aspirin and was a bit better but not until I started Warfarin several years later the symptoms disappeared.
Not everyone has the antibodies positive but STILL have the symptoms and the illness.
I suggest you look for a Specialist of autoimmun illnesses who has great knowledge of our sticky blood. Also try baby-Aspirin. Some of us ask for a trial of LMW Heparin ( if the Specialist allows this) to see if the symptoms will ease.
Thank you so much, I am so happy already to hear from people that know so much, I have never heard of this since stumbling upon this site. I do think that maybe I should go see a specialist in autoimmun diseases just to make sure everything is fine and maybe I should redo the tests in a while.
I will for sure look more into it, thank you so much for the advice I really appreciate it.
Please do see one of the specialists off our charity website who will have the skill to make the right diagnosis. Even if it is a watch and wait, as some do not pass the tests straight away, I was one of those. MaryF
I had similar symptoms 4 Years ago at work lasted 45 minutes . First hospital said panic attack. My husband is a family doctor took one look at me and rushed me to a second hospital. They decided TIA on full symptoms but MRI was identified as clear. They were looking for clots in the arteries.
I had a repeat scan by APS haematology last year as a precaution and they found a venous clot which when compared to my first scan was there all along!
Do go for the MRI. if TIA lasted less than 1 hour then often doesn't show but your symptoms lasted longer. However get a second opinion on the scan or take it to a specialist haematologist/neurological expert to check for both types of clot as if seronegative APS then either is possible.
Good luck and repeat blood test in 12 weeks for peace of mind the earlier you know the safer you are medically.
It is such a terrifying experience and I am struggling to believe this is dietary related because it effected my speech. I will make sure to go and get this all checked out especially because I am left with this constant headache that has yet to disappear.
I suggest first: sit down, and as Mary suggested above, make a short personal and family history. Pay particular attention to the 2 episodes you discribe above so that future doctors may be lead to believe there is a functional cause at work here that accounts for both incidences and is not a minor ear or chest infection.
You might also add lists of foods you eat and actvities done, such as exercises. Autoimmune flairs are sometimes triggered by certain foods that the patient is allergic to. (I ate bread for years. Years. Then, when I tried the Adkins diet -- low carb --- a lot of my symptoms went away and energy returned. Turns out I had Celiac. After going gluten free for some months I accidentally ate a bit of bread at a restaurant one day. I spent the next few hours rushing to the bathroom either to poop or to vomit. Yeah. I'm allergic. But how come I ate this "to me" poison for decades and had no idea it was slowly kiling me?! Thats how food allergies go.
Second, try a non emergency room doctor. ER docs want to treat you, but they expect to see infections, cuts and breaks -- with the occasional misarriage. And, showing a prejudice we all have, they see what they expect to see. And this might actually be time to travel if need be to a well regarded hospital or medical campus.
Third, APS is one of several blood clotting disorders. I am not familiar with all of them but I know there are others. Something in your circulatory system is obviously malfunctioning. Go to a hematologist, internist, vascular surgeon to get a diagnosis. When scheduling an appointment be sure to tell the receptionist that yours is an urgent case - either in person with your discharge papers as evidence, or carefully over the phone.
Your symptoms resonate with me. I did not have all the ones you describe, but I too was fobbed off initially in ERS as having "panic attacks" or just wanting attention and concocting symptoms to get attention; "you have low blood pressure and low cholesterol, so you can't be having a stroke." Remember: docs see what they expect to see.
In my case, high school friends who knew me well and had become doctors, heard through the grapevine that I must be having a mental breakdown because i was repeatedly showing up at ERs with made up stroke symptoms. My friends knew this could not be true. They held a conference call with my husband and arranged for me to see a hematologist in Cinn. Ohio (a 4 hour drive) where I got my diagnosis. Might you have any high school friends who are now doctors? -- just kidding! But this was an intervention that I'm sure saved my life.
Not a dr and new to this myself, but whatever it is needs to be investigated. Don’t take no for an answer. Maybe an eye exam?? But something is causing this.
These neurological symptoms are terrifying. The truth is doctors will admit they cannot always know what is happening. That does not mean nothing is happening! They were clearly concerned about a stroke because you had the CT scan. It is great you saw a neurologist. She would need to think about many possibilities but it sounds like autoimmune issues were at the top of her list. She likely did all the anti-phospholipid antibodies and other relèvent tests. If the CT showed nothing, they likely think the MRI would not help. These do not mean you do not have symptoms, though. It only shows damage. So it is great the CT was negative. Dehydration can make everything worse. The first thing you could do is make sure you get enough fluids and salt. Not only are you clouding the picture if you are dehydrated, the dehydration makes any neurological issues worse because you are not getting enough oxygen to the brain. I agree with the others to ask the neurologist if a trial of low dose aspirin would make sense to see if symptoms improved. This is so scary. Keep in touch with your doctors.
I will make sure to bring that up to my specialist, so I can look further into that. I have looked into the hemiplegic migraines, and this is what I think it to be but my specialist said it seemed a bit odd to be that I have never suffered with them before and she didn't believe it to be so crippling. I feel at this point that the doctors are taking my symptoms very lightly, and if there are nothing then that is fine but I just haven't had a clear answer and the previous attack happened while I was driving and I just don't want it to happen again. I really appreciate all the help and the advice I will make sure to get another opinion on this.
Your symptoms sound like what I experienced in April/May. I'd had a headache for two weeks steady... constant headache. It spiked on a Sunday morning. I took a shower. When I got out, my right leg went dead. It resolved a few minutes later. As I was getting dressed, my right arm became useless. I was confused. Went downstairs, was stumbling around. Hubby rushed me to the ER. When I arrived my right leg had once again gone dead. It was a TIA. The precursor to the stroke that followed about 30 minutes later. A week and a half afterward, I had another TIA. MRIs were done on both occasions. The first showed confirmed the stroke diagnosis. The second didn't show new damage but did show the residual from the stroke. Please persist with the specialists. I'm in the US. Where are you located?
I know you are Lupus Anticoagulant positive and have been on Warfarin (at least earlier) but also at a too low INR. Try to be at a higher INR and also try to stay there, and see what happens. I need an INR of 4.0.
As we both are LA positive it can be difficult to keep the INR in place, but test often, try selftesting and doubletesting (finger and vein) and make notes of your greens every day and if you take some other drug one day. Hope you have a Specialist for your blood who understands your difficulties.
Your symptoms are similar to ones I had about 20 years ago. Loss of half my sight, numb tongue. Numb elbow. Was investigated for MS. They decided it was a trapped nerve in my elbow, and migraine with no headache.
Fast forward 5 years, I had a dvt in pregnancy. Low levels of transient antiphospholipid antobodies.
Years of migraine aura, numbness. Investigated several times. 7 miscarriages.
Pregnancy with preeclampsia
Another with high blood pressure
Afterwards, severe neurological problems .
Another few years pass.
A TIA.
Then... very high levels of all the antibodies inc lupus anticoagulant
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