So I can't remember where I left off last year in this forum. But I did test positive for antiphospholipids 3x. Though my doctor felt the levels were not high enough to fret over. So no blood thinners. Though through the past year I have continued my intial symptoms. However it hasn't been as severe. Recently I have been having muscle spasms. Fatigue. not as many headaches. I have been sick for over 3 months. What I find strange is the noticeable illness ...change I feel in the past year. just all of a sudden. Anyway. blah blah blah. I stopped documenting my days and odd experiences because it was doing me no good. and obviously I'm in no danger of life or limb. But 2 days ago I was driving down the road and had an unusual visual disturbance that sent me into the ditch back into traffic and luckily no accident. Very much so shook me up. That whole week my eyes had been hurting. I thought maybe I was getting a miagraine. It has happened before. Also I have just felt just unusually unwell all week. I haven't been to the doctor over it yet. Because honestly I hate to be a pessimist but it seems like a waste of time and money.
It's been over a year.: So I can't... - Hughes Syndrome A...
It's been over a year.
HI there, can you remind me if your GP referred you to anybody and where you are located, as you clearly need more help, the tests when passed do not always indicate the severity of symptoms. MaryF
Hi,
What happened after you had a lot of good advices from members on here to see an APS-Specialist and read as much as possible to understand this curious and rare illness that we all share on this site? So very few doctors know about APS.
Before I knew enough about APS and was on only Aspirin I sold my car. After being properly anticoagulated with Warfarin, my neurological symptoms (a lot of eye-problems and also severe Vertigo) disappeared and today I can drive if I want to.
Read the very good advices given to you, one year ago and look for an APS-Specialist. You need that. Are you still on Aspirin?
Read also on this website about symptoms and buy "Sticky Blood Explained" by Kay Thackray. This book is not new with the latest drugs but the symptoms she has are the same.
Best wishes on the last day of the year and I wish you A Happy New 2016 and hope you will feel better soon!
Kerstin in Stockholm
Your other post one year ago, you called "In lingo" and it was very popular with several members answering you.
Press on that one.
Kerstin
I agree with the advice Mary and Kerstin have given you. The level of your positive tests are not necessarily an indicator of the likely severity of your symptoms.
I would advise that you go to the Dr and ask for a referral to an APS experienced consultant,
Dave
Yes it was in lingo my last post! You all are right I should find another specialist. I'm in crossville Tennessee USA. In between Knoxville and Nashville. I just feel hopeless. It's one of those I feel like my neurologist and rhemotologist think I am wanting a diagnosis of something just for being sick sake. However the bottom line for me is something is wrong. Just a hopeless feeling. and I had high hopes because I visited a hemotologist in Nashville. At Vanderbilt university. which is a state of the art facility with doctors years of experience. Teachers and researchers. When I talked to this doctor about my symptoms he told me I was lacking on of the antibodies (forgive my ignorance but that's what I got out of it) that made the clotting factor risky. And that if ever I were bed riden or pregnant my risk for clots would increase. But as for now my levels of anticardiolupins were not too high. And when I told him my symptoms were ailing he said my neurologist would handle it and he could refer me to a new Neuro if I needed. He pretty much suggested a neurological disorder in so many words. Ugh......but my gp is helpful in the way of if I want a refferal all I really need to do is say the word and she'll give it. But otherwise in the way of helpful or concerned I don't feel she is.
I haven't been taking my asprin. Though I still have a vitamin d deficiency and miagraine meds I take.
The best doctor I had was a local hematologist. He admitted knowing little but wanted to find a doctor for me. Intially when I saw him I was severely ill and my last visit with him (long ago) he noted that I looked much better and this made him realize how much illness I had been coping with being able to see me well again. so it's interesting at times I feel better and almost directly a year later I am worsening. It almost makes ms believable. But today I'll do some research on aps doctors.
So you need a Specialist! We always say that the Neurologists do not "get" what APS is about - too thick blood. That is true with some exceptions. Today we heard about a Neurologist who knew APS and who listened to the patient.
The most important is that he or she KNOWS APS very well (a Specialist). Look for that Doctor! He will give you the right treatment (anticoagulation) and you will feel ok.
Kerstin
Also restart your baby-Aspirin every day. Only a small dose of 75 - 100 mg is enough.
Good Luck!
Kerstin
I found a nearby specialist. Is it terrible I'm counting the minutes to call once they open. Hopefully I won't have to wait months for an appointment.
I went down to Duke for my hip replacement in 2013 and the hematologist I saw there for the anticoagulant bridging thinks I do not have,and never have, had APS. But the doctor in Cincinnati who diagnosed me ( I recently saw him again) knows that I do. I know that I do. And if I ever get taken off warfarin I joke(?) that I'll set up a grow light in my basement and cultivate my own curare.
There is apparently some controversy, especially here in the US, , regarding APS diagnosis. It seems to have become an internal, medical political fight. Which is all the more reason to go to web sites, like APS Action, and consult with a recommended doc.
--it's like US docs can't face the thought that APS is as prevalent as it really is and the consequences to the attending revelation that autoimmune issues in the chemical and carbohydrate soaked US is are becoming frighteningly common.
( which leads me to another thought: ( cue the X Files music). Big Pharma doesn't have a lot to gain from APS diagnoses. Warfarin is cheap generic now. Aspirin even cheaper. And Big Pharma in today's post de-regulation world has more to gain from a diagnosis of MS or depression or Fibro. oK. I'll go back to stoically dismissing my conspiracy theories now.)
Gina d! Looking at UK medical websites, it seems they are more understanding of symptoms and focused on quality care in general. The difference in sites on aps in u.s. vs UK is unreal. Way more symptoms blister on uk. Do you know what I mean? I have worked in an e.r. and nursing home and long term care facility and it's clear to me medical professionals get fed up with scared and whining patients worse than waitresses and their bitchy guests.
Tonight I was startled by sharp gigantic pain in the right side of my brain like a shooting quick headache. Now my ear feels numb and my neck feels weird. Could this be serious? Or possibly just a migraine coming on?
Have you restarted Baby-Aspirin again? Do that. I recognize those sudden severe pain on one side of the brain lasting for seconds only. I had those with eyesymptoms.
If it goes on and also other symptoms please go to A&E to have it chequed. Also call that nearby Doctor if he really is a Specialist of APS.
Take care!
Kerstin
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