2 months now I have been suspected of Ms to anxiety. After a string of blood tests, my neurologist found positive for anticardiolipins. It is 24. My vitamin d was 10. My symptoms have been nuerological and including severe miagraines, jaw pain, extreme fatigue, pins and needles, muscle spasms, bone and joint pains. I notice the more active I am the more symptoms build up. I find it hard to lay about because I am used to working 50+ hrs a week. However I have not been able to physically or even mentally been able to cope with working. I am useles the nuerologist is sending me to an oncologist whom i will see this coming friday that specializes in blood as well. My neurologist said my symtoms do not line up with any tests. I am a bit worried because he said he beleives i had a mini stroke and has been doing tests echo eeg ultrasound of carotid arteries. How can my symtoms not line up with tests? Why must i wait so long. And why can i not be active without my body ailing me? It is a bit extreme. Last week my boyfriend came home and found me passed out on the ground. Not happy with waiting on doctors and need to get back to work and get paid. Is it typical to have these troubles? Or am I out of bounds here? s.
In lingo: 2 months now I have been... - Hughes Syndrome A...
In lingo
If you have positive tests you probably have APS. APS is often misdiagnosed as MS and Neurologists, we have found here, are not so good at this very rare illness. They do not understand that we have too thick blood that gives us our neurological symptoms.
In some way you can be glad that you probably will have a diagnose now as you have got the antibodies. Not all members have the antibodies but still have the illness and then it is more difficult to get a diagnose.
Where do you live? Look at hughes-syndrome.org/ selfhelp/spec in your area. It is very important to get a Specialist to talk to so you can feel better. Most of us feel much much better when we are enough anticoagulated.
Please stay on here and try to learn as much as possible about this illness. We are here for you. Many members can help you also.
Best wishes from Kerstin in Stockholm
Hi please show your neurologists and other consultants this website: hughes-syndrome.org/
Also an article here: telegraph.co.uk/health/4400...
MaryF
Great article about the Professor and Hughes Syndrome.
Kerstin
Yes, and this article here is also relevant: dailymail.co.uk/health/arti...
MaryF
Thank you all. When I begin my search online of the results my doctor gave me, I ran across hughes syndrome. I love in Tennessee US. Since my symptoms began I have been to the emergency room a handful of times and I am pretty sure they think I am crazy. However with the list of diagnosis they have given me I feel quite the same about them. Does the difference of low medium high positive have any relation to diagnosis of A PS or is it apparent by symptoms and positive anticardiolipins?
I am pleased to maybe have come to a conclusion however unhappy the outcome. I am just anxious to tell my job something. Because I have no more sick days and my best option now is short term disability or getting back to work asap. however if no diagnosis how am I to get better or expect disability for what? Not feeling well? This is all very frustrating. I can only imagine what others have been through.
Live in, that is. Typing on my phone and auto correct is silly.
You need to be on the correct medication. Here are some names on here, and of course many others from the USA are on here also. apsaction.org/ MaryF
Stay on here because i am sure you are going to get wise answers from other members in the US.
With APS I have 3 important things to say: 1. Have a diagnose. 2. Get an APS-specialist who knows APS. (So very few doctors do) 3. Try to find as much info about APS as possible.
We have too thick blood. When we are anticoagulated we can feel almost quite normal. Remember one thing also: You are NOT crazy. We have all felt that way infront of the ignorrant doctors.
Kerstin
Yes great advise above -They are the best -- down load this info and take it to your Dc's and don't take NO for an answer --you are in a battle here and your have to take it to them.. read and understand everything you can -this will help you in your fight.. many here to help with helping you understand..------------------------- C & J here in N.H. usa
I do feel a bit more energetic after taking aspirin daily now. However I am still getting mild headaches and at times miagraines. My doctor gave me naproxen for the migraines however I am concerned with taking so Many medications. He also gave me gavapentin for pins and needles but now wants to gove me nortriptyline for migraines, pins and needles and my guess he thinks I am depressed as well. When talking to him recently I broke down crying because I am f rusterated with symptoms and no diagnosis or relief. I feel like My feelings are valid and I am not clinically depressed. Just tired of my quality of life being affected by these symptoms.
Gabapentin that is.
Naproxen is a nsaid (non steroidal anti inflammatory) - and means it has anticoagulant properties. If you take it with aspirin - it does mean you are thinning your blood more - but if you go on to warfarin (Coumadin in USA) you won't be able to take Naproxen. My daughter has CFS/ME - although we have an appointment with Prof Khamashta on Mon 12th - to see if in fact it is a misdiagnosis, and is on a triptan (amitriptyline) but it works well not only as an antidepressant, but also for migraines and joint pains - so some meds have dual purpose - I'd try it if I was you - it take a while to build up in the body - but hers helps her. I take Pradaxa (only licenced in the UK 2 weeks ago), but still get bad migraines - When I get round to it I shall ask my GP to prescribe something stronger than what I currently take - spent all New years day being sick and very poorly with migraine (with no alcohol drunk at all!!) Nurofen was the only thing that used to work with my migraines (large 600ml dose) but I can't seem to find anything so far that now works). Good luck with finding a specialist - the comments on here are excellent - and once you get your meds right (and the proper diagnosis) you will start to feel more in control of your disease, rather than it controlling you. x
A good 80% of the drama lies between symptoms and getting a diagnosis. You've gotten that far. But the symptomology of Hughes is quirky. Doctors who fancy themselves knowledgable expect to see the classic symptoms (DVTs, pregnancy loss, mini strokes) and ONLY the classic symptoms. But if you think about it (and not even very hard at that ) the circulatory system impacts each and every system in the body. Clots can form anywhere. And when they do then -- surprise! -- the tissue near those clots is going to growl and complain because it is lacking the food and O2 it needs.
Doctors who are really experienced with treating APS will listen to you. If you present with symptoms which are not among those classic ones, chances are that doctor has heard, or read, about another patient presentation similar to yours. And there is a whole palatte of medications. Warfarin is the usual. But much is still not known about exactly which step in the complex coaguation cascade is faulty in which patient. So while many of us do better on warfarin, others are better treated with lovanox, heprin, fragmin. Plaquanel helps a lot of us with brain fog, joint pain and headaches.
Do read up as much as you can on this. Amazon carries a few books on the subject. The one most of us prefer is "Sticky Blood Explained." If you wish to pull back, as it were, and view APS within the whole autoimmune spectrum, I suggest "The Autoimmune Connection." In that book you will find validation for the fatigue -- most people feel "very tired" as their first sympom of an illness like the flu. Which is because their immune system is running on "high." Our immune systems are stuck on "high," until we find adequate treatment -- so we can feel that tired all the time! And another book I value: "In the KIngdom of the Sick" describes how hard it is for people who have chronic illness to be understood by people who do not have chronic illness.
And I am a mini stroke survivor. I have had lots of them. I knew at the time something was wrong, but since I did not exhibit many outward measurable signs, I was dismissed as a GOMER ("Get Out of My Emergency Room-er.") . But the MRI I finally had after months of what I had baeen calling "panic attacks" revealed that a "panic attack" was actually an infarction stroke and that I had had dozens of them. The good news is that nearly all the damage was gone within a year of starting on warfarin. Physical therapists suggested erxercises for balance and strengthing which helped immensely!
Find an APS site recommended docctor. If you have to drive -- it will be worth the trip!
Gina (the Vandy grad) in West Virginia
please check out MDs in your area/links
apsfa.org/apsfadrlistsc.htm#TN
mayoclinic.org/diseases-con...
best wishes....
I really appreciate the support. I feel more positive of finding anwsers now. Going to primary doctor today, sort of nervous. Any advice?
i can only advise you to read once more what has been said above. You need an APS-doctor.
If your "primary doctor" who you are going to see today is an APS-specialist and understands what you say, stay with him. Otherwise get another doctor who understands APS.
That is very important for you!
Kerstin
Well my pcps gave me the I dont know what is wrong with you run. I didn't even present hughes to her. I see the oncologist on Friday, meanwhile waiting on a referral from pcps to a doctor in Nashville at a medical college. 
all the while out of work and unable to legally drive since I passed out. Gay!!!!
I dosnt mean to say gay! That was gasp! Auto correct on my phone...really need to change this problem.
So sorry that it is a real fight to get through to the doctors and everything around this illness . I am sure that you can change this problem and get a positive outcome of it all once you see someone who i ready to understand and listen to you.
So many of us here have told about the relief to finally have someone who understands and who also have the knowledge to make you feel better with the right treatment.
I hope you will soon feel better. I keep my fingers crossed for you! Good luck!
My best wishes to you from Kerstin
Hello again!!! My oncologist believes it is hughes and is retreating next month. I am thankful the asprin has given me loads more energy! Weird? My blood pressure was very low a couple of months ago and seems more legit now. I am seeing a rheumatologist soon as well for the bone pains. This evening my leg started hurting, weird though. Its a burning sensation sort of like sun burn on the top of my right leg just in the lap area. However it doesn't appear to have anything wrong, just feels abit warm. Curious if this has anything to do with hughes or is just a whim? It is starting to hurt worse, though as I said appears normal. Suppose it could be nothing. I have been feeling so much better I had almost forgotten anything was wrong with me at all.
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