Thank you for this wonderful site. Whether I have Hughes or not, I’ve sure learned a lot by reading your posts.
I’m 46 years old and have three healthy children (full term), and had one miscarriage (12 weeks). I have always had bouts of crippling fatigue and migraines (ever since my teen years).
While in my late 20’s and while on birth control and doing lots of 8 hour flights for my job, I couldn’t walk 10 feet without having a tachycardia, I was in and out of the hospital at that time. The cardiologist, the internist, and the emergency room doctors all said I was healthy. One emergency room doctor even said that I was a type A high strung personality and that I would need to become a type B person (more laid back) and my symptoms would go away on their own. Essentially he said “it was all in my head”. Only my nutritionist truly listened and trusted what I was saying. My nutritionist said it sounded like thrombosis (my pains in my legs and chest, etc…) and he told me to go off birth control, eat more vegetables and less junk food, and to work out (exercise) every day. He saved my life. (Last year at the age of 45 years, I found out I was Factor V Leiden heterozygote and prone to clots when flying and with birth control hormones.)
My first neurologic symptom was at the age of 28 after the delivery of our son. Within a month of delivery, my leg started to go out (no feeling) and I would fall while walking. I would also have bouts off and on where I would sound drunk and slur my words. I went to the neurologist who said it was probable MS.
Since then crippling fatigue that comes and goes. Over the years I have had bladder issues, foot drop, feeling of bugs on skin (but no bugs), hot fire burning spot on skin (but cool to touch), giddiness, memory issues (foggy memory, slow processing at times, mixing up words (for example, I once said “nice to foot you” instead of “nice to meet you”) and when I start to mix up words I end up doing it twenty times during a conversation so instead I just stop talking. Last year I drove by a street turn 6 times because I couldn’t recognize it (3 blocks from my house while my teen daughter kept saying “mom you missed the turn again”).
I take regular low dose aspirins to control the pain in my heart, and neck, and left arm. I also have Meniere’s in my ears and Raynaud’s shows up in my fingers and toes on the cold days. Last year I developed the lupus butterfly rash on my face.
My current MS doctor doesn’t believe it’s MS, but still watches me. My MRI's show a few lesions (foci) of growing intensity in the white matter. I also have scar tissue in lungs likely due to pulmonary embolism (never smoked). Yet, the doctors have never caught a clot in action or saw a DVT in me on a scan. On the other hand, over the last year my blood tests have shown:
-my D-dimer test was high at 488,
-my prothrombin fragment 1+2 moab was high at 367 (like a high D-dimer, elevated F 1+2 independently predicts occurrence of VTE),
-my VLDL-3 (small remnant and the worst LDL) was high, and
-the most protective HDL-2 was low.
That coupled with my symptoms and that I am Factor V Leiden heterozygote and yet I’m still not on Warafin or any blood thinner other than the daily low dose aspirin.
Then last week while searching migraines (I was in bed for 3 days nauseous with a doozey of a migraine), I ran across an article that was titled “Migraine, Memory Loss, and Multiple Sclerosis Neurologic features of the antiphospholipid (Hughes) syndrome”. Wow, it described ME. I had never heard of Hughes Syndrome nor been tested for it before reading that article. Our 16 year old daughter has over the last two years started showing symptoms of occasional crippling fatigue, dizziness, and severe migraines (hospitalized several times) so I would like to find out what is wrong with me so that if she has it, she won’t go through decades of struggle.
I just had my blood tests this morning for antiphospholipid syndrome. Thank you for all the information on this site so that I was able to tell my doctor what tests I needed. My GP had never heard of Hughes Syndrome. I can’t wait for my test results to come back. After 25 years of symptoms, it would be nice to have a diagnosis and a course of action. I know some people are shocked by having the diagnoses. That won’t be the case for me. For 25 years, I’ve walked 3 miles a day and taken baby aspirins and given up meat because I know otherwise I end up bed ridden.
When a neurologic symptom comes up, I apply neuroplasticity. For example, when foot drop comes back, I change things up and walk backwards on the treadmill (slowly albeit). When my fingers start losing feeling, I do something new like pass the basketball around me. When I get a fire spot on my skin, I put an ice cube to the spot and my brain realizes that the spot is not really on fire.
I feel like I’ve done all I can on my own to fight to stay healthy, but as I get closer to menopause my symptoms are getting worse. It would be nice for the doctors to find that warafin or heparin would help. So I am patiently waiting for my test results.
Thank you again for all the great information in your posts. I feel like after 25 years of being on my own, I’ve finally found my group.
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Tranquility1
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Dear Tranquility, I can not say how touched I was when I read this........ I recongnize it. I felt like that when I read "Sticky Blood Explained" by Kay Thackray on page 55. I suddenly knew I had APS. It is so well written explaining how it is to have APS.
You have already been here but let me welcome you to our friendly site. If you do not have APS I will eat my hat. (We say that in Sweden when we feel sure of something.)
Hoping for the right answer soon so you can start to feel better.
I read the same article and thought the same thing. I had low titers of Cardiolipin IGG each time it was tested over 13 years. (No one bothered to test for these things while I was in a hospital after a seizure.) But I don't have a history of clots and never had a pregnancy. Doctors in the US don't seem to be listening to Doctor Hughes. But at least I can take aspirin over the counter. Every time I stop the aspirin my speech goes wonky.
I really hope you get help. I'm pretty discouraged myself.
Thank you for the feedback, and also the detail with your medical history this is very very useful, you are on the right track. My daughter also has Hughes Syndrome like myself as does my son, please let us know how you get on and I presume you have read all the information on the actual charity website? Please let me know if you need any medical papers or articles or anything that can be of extra help. Also plenty of books for sale at a reasonable price through the charity website. MaryF
Lure2. Thank you. I didn't read the article you mentioned. I'm going to hunt for it this evening.
AnnNY, are you in NY? I am in southern New Jersey.
Over the years and decades I have had times of being discouraged and times of being hopeful. I am in a hopeful state right now (waiting for my test results). If they come back negative, I'll be a little knocked (discouraged) and have to re-establish my hope. Most United States doctors have never heard of Hughes Syndrome; and of those that have heard of it, they don't agree that there is a seronegative Hughes Syndrome.
If I have a negative (or low) test results, I am going to try to get an appointment with Dr. McCarty in Maine (yes a very long drive and an overnight stay). She is the one U.S. doctor that I have found who has written about seronegative Hughes Syndrome in a positive light. Dr. Gale McCarty in Ellsworth, ME. Here is a good article she wrote on seronegative that appeared in the APS Foundation of America newsletter in 2006. apsfa.org/docs/APSFAVol2Sum...
Online, it states that Dr. McCarty is an internist with 36 years of experience and practices in Internal Medicine, Rheumatology, and Clinical & Laboratory Immunology.
Mary, I haven't taken a good look at the charity website yet. I plan on doing that later this evening as one of the kids is pushing me to get off the computer now. I am so glad you mentioned books. You must be a mind reader. I was on my Nook earlier today looking for a good book on the subject and I couldn't find a one. I'll be shopping later. I can put down the Nook and hold an actual book. It will be a treat.
Thanks for all the great information. The United States is very far behind on Hughes Syndrome and I am thankful that I get to tap into the knowledge of an international group.
Hi, I spoke (as always) about the book you can find on the Charity website, that is (my favorite): "Sticky Blood Explained" by Kay Thackray. Take care.
It is good that you will not take " no" antibodies for" not "APS. I can hear you are hopeful. Keep on you are on your way.
Best of luck from Kerstin who is going to bed in Sweden now.
Welcome to the group Tranquility I'm pretty new myself to the group and it sure helps having a group of people all in the same boat, they always help if they can with information and tips due to their own experiences (think that's the only way to learn about this disorder is by having input from people who've been there themselves) so hello from me in the UK and hopefully we'll hear from you with the outcome of your test results - take care
I really hope you get your diagnosis soon. It took me 22 years to finally be heard! My symptoms got much worse when I started to go through peri menopause. The migraines and sickness were constant along with everything else you have described. I saw Prof Hughes last year and got my diagnosis. I was so happy! Finally I knew what was wrong with me and something could be done to help. Good luck, I hope you get diagnosis and treatment plan soon,
I just called Dr. Gaito's office. She doesn't take insurance and her initial appointment is $425. Definitely outside my budget. If I can't find a doctor who takes my insurance, I'll have to save up for that appointment.
Thanks for the contact!!!! Keep sharing the info. It really helps.
I ,too, had to pay "out of pocket" but my insurance re-imbursed me 80%..because she is "an out of net work provider"
.Followup appointments
are &190..includes blood work.....I am now on Medicare primary....Dr. Gaito is on medicare panels so I pay her $180 and Medicare reimburses me $135......I still have to pay co-pays
good luck.......OUT OF NETWORK PROVIDER BENEFITS is what you need to ask your Insurance company
2nd suggestion and one Dr. Gaito gave to a friend of mine......The Hospital for Special Surgery/Rheumatology Department in New York City has an excellent APS research and diagnostic team......and the hospital takes all insurances
Thanks Luisa! I just did a little research on HSS (Hospital for Special Surgery) in New York City and they are one of the three big research hospitals in the U.S. working on APS.
It also looks like they consider seronegative (even if they may not call it that -- they look at symptoms and not just antibody tests). For example, in an article about their research, they speak to the pitfalls of lab testing for identifying APS, since "almost half of the patients who develop CAPS do not have a history of aPL positivity." Link -- medscape.com/viewarticle/81... (Dr. Doruk Erkan from HSS was a co-author on that research).
That is scary. Almost half of those who develop CAPS were not aPL positive. I look forward to the testing for APS growing out of it's infancy.
I just called over to Dr. Doruk Erkan's office (at HSS) and was able to get an appoinment within 3 weeks. Wow -- that's unheard of. Thanks for the suggestion to look at HSS.
Great suggestion. I won't cancel my appointment with the other doctor in September until I hear what this other doctor in New York City has to say in a few weeks.
Yes, I'm in New York. I was really disappointed to find out that the place I went to was so closed minded about serio-negative APS, especially since Aspirin has really done a lot for me, although I'm not at all where I'd like to be with the brain fog. I was put on plaquinil again which has helped me in the past, so maybe I'll get better when it fully kicks in.
Luisa-- Do you have serio-negative APS? Have you had blood clots? Basking Ridge would be closer than Maine and Maine is closer than London.
My mother and her aunt both died unexpectedly in their sleep, so I'm worried this may be my fate, as well.
Did you mother and her aunt have APS? Or those symptoms? I have not heard of anyone with APS that die during sleeping unless they are very old.
I do not think you shall worry about that but try to find an APS-doctor to talk to or read one of the books about APS so you can notice if you have those symptoms.
My mother was a bit confused and had pain, but she didn't really talk about it. She was only 69 when she died, and I'm 61. Her aunt as far as I knew was healthy but was only 58. The other siblings on my mother's father's side all died young--42, 44 & 67. My mother had six healthy children and no miscarriages that I knew of, but I had to be delivered because she had signs of pre-eclampsia. Three of us now have chronic pain conditions. I've been diagnosed with lupus, MCTD, UCTD, fibromyalgia, somatoform disorder. I was very ill with something that caused a seizure and was given heperin just because I was stuck in a hospital bed. But after weeks of having the worst brain fog that I could imagine, jumping arms, twitching limbs, and having a hard time getting the proper words out, I was suddenly having conversations as if I hadn't been sick. I kept wondering why, until I started reading the articles of Dr Hughes. I've been having problems ever since with reading, writing and speaking which aspirin helps (and also a sinus headache and stomach pain), but the rheumatologist here just refuse to listen to me. I think by Dr. Hughes' writings a heperin trial would be in order, but it looks as if it is impossible for me. I so much want all these brain fog symptoms to be gone. At least the aspirin helps, and I'm hoping that the plaquinil will help with more time.
I had AURAs to begin with (as to the neurological symtoms) I did nothing with those because i did not have headache. Started to have trouble to see in bright daylight. Started to get numb in the fingers and in parts of my face, mostly at the right side of the mouth. I remember one time when I was driving. Then came the TIA/stroke and I ended up in hospital. After that I got 75 mg of baby-aspirin (in Sweden called Trombyl) MRI showed nothing. The 75 mg Trombyl helped for 4 years.
I was op for Hyperparatyreosis and after that op I started to have more of the above symptoms with difficulties to read, doublevision, Vertigo, sharp pain in parts of the head during a couple of minutes. I also could not see on the lower half part of my right eye for som minutes.
.
The doctors (even my Neurologist) thought I should have Warfarin but I was not sure I had APS. Then I read "Sticky Blood Explained" by Kay Thackray and on page 55 I suddenly saw that she had exactly the same symptoms as I had. Then I did what the doctors suggested and started Warfarin and the symptoms disappeared
I had e lot of microclots not visible on MRI.
Good luck to have an APS-doctor and an anticoagulating drug that will help you
Thanks Kerstin. I just found out my thyroid is atrophied. It looks as if this maybe autoimmune according to Dr. Google. If anyone knows a doctor who will treat serio-negative APS in New York, please let me know. I hope there is progress on this in the US soon.
Thank you for all the great information. I purchased "Sticky Blood Explained" and I can't wait to start reading it tomorrow when it arrives. I didn't purchase it from the charity website because I wanted to get it right away (I'm in the U.S) since my test results will be coming in later this week.
In lieu of purchasing the book from the charity, I tried to make a donation to the charity directly. However, my credit card company won't allow the payment because they wonder if the card was stolen since it's an overseas purchase. I'll borrow my husbands card later to make the donation.
Luisa, thank you so much on the heads up information on your doctor. As soon as my test results come in, I'm going to make the call for an appointment. I really appreciate you sharing that you found a good doctor for Hughes Syndrome within driving distance.
AnnNY, if I find a doctor that will treat serio-negative APS in the area, I will let you know. I am hoping my test results that come back later this week will put me firmly in APS so I don't have to deal with doctors that don't recognize serio-negative. But I'm gearing up just in case.
Thank you again to everyone for all the great information!
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Haematologist still says my migraines have nothing to do with APS/Hughes
Positive Test Results
Self testing while on vacation out of the country
High Anti-beta2-glycoprotein-1 test results - advice needed.
