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Hughes Syndrome APS Forum

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New to APS and terrifie.

Lindajoy profile image

Hi. My name is Linda. I'm from Ohio. I just got my test results today and found that my Beta 2 Glycoprotein IgM is high for the second time since the first test, so the doctor has diagnosed me with APS (the lab doctor, not my vasculitic doctor so far). I'm terrified as I cannot take blood thinners--I'm allergic to most of them, and I have asthma, so aspirin is not an option, either.

Anyway, I've had blood clots in my life: two from a PIC line, and some superficial ones with an IV. None that I've ever formed on my own. I've had two very healthy pregnancies and no miscarriages. I do have levido reticularis and acrocyanosis. I get migraines a lot anymore (I'm 47). My Beta 2 Glycoprotein IgM number is "low positive," at 25, on a scale of 20-80 SMU for the low positives. Above 80 is considered high on this scale, and below 20, normal. I've read that one has to have a Beta 2 Glycoprotein IgM of 40 or over to be considered for APS. Is that true?

What really stinks is that my test was done at the Cleveland Clinic, and I belong to MyChart, so the test results were automatically sent to me without my doctor talking with me about them first, so I'm freaking out here. All I have are the results and what the lab doctor who interpreted the results said about my having APS.

My lupus test was negative. I'm wondering how many of my symptoms, over the years, that I've been going from doctor to doctor for, are from APS and if I even have it. I just want to talk with all of you and see what you think.

I know you're not doctors, but you do know this disease, which is a far cry from what I know right now.

Thank you. I look forward to talking with all of you.

Lindajoy

24 Replies
MaryF profile image
MaryFAdministrator

Hi there a big welcome to you, lots of us on here in the same boat, lots of blogs, lots of info, and of course all the articles on the Hughes Syndrome Foundation itself. I do hope you can get in contact with the Cleveland Clinic so that they can help you, beyond the results which had some insensitive posting out, without back up support. There are quite a few from the USA on here and, also this site for you americanaps.org/. We look forward to you being on here and reading with us, and contributing, and we will try and help with your worries. There is so much hands on knowledge on here. Mary F x

Hello and welcome to the group! You are right we are not doctors but we are the professionals at this so you have come to the right place! Hughes effects my whole body so I am sure a lot of things you have went to the doctor for was related! I also know what you mean about being scared of blood thinners I am allergic to heparin and most thinners are heparin based. But still there are some thats not so whatever is causing your allergic reactions I am sure your doc can find something that will work for you! Btw where in Ohio do you live? I am from Ohio as well all of my family is still there. I am from a small town called Cadiz have you ever heard of it? Anyways good luck and I will pray that you get on a good regemen!

Hi, everyone. I live in Lima, Ohio, for those of you asking. I see Dr. Bartholomew, vascular medicine, at CCF. He's the head of the department. I guess there's a Dr. Krea, or something like that, at CCF, who specializes in APS. Who are you seeing, Pumpkincake?

I've had a lot of awful symptoms over the years: severe food allergies that's caused me to have to be put on a feeding tube and formulas for over a year; anxiety; neuropathy; migraines; weakness; muscle pain; gastric pain; intolerances to meds, chemicals, smells, etc. You name it, I have a problem with it.

I've been diagnosed with acrycyanosis, "corn beef rash" (levito reticularis?), neuropathy, Dysautonomia (autonomic dysfunction), gastritis, mast cell disease, Addison's disease, and so many other things, it's got to be impossible for someone to have all that I do.

Right now, I'm seeing a specialist for Myalgic Encephalomyolitis, which may explain all of my problems.

My CCF doctor, bless his heart, emailed me to tell me that he wasn't concerned about my Beta2 Glycoprotein IgM, as he thinks it's too low to be considered for APS. I looked up my first test that the lab doctor said was my first positive and secured this diagnosis for me, and it was 20, on a scale of less than 20 is normal. What do you all think? Do you have high Beta2's as your deciding factor for this disease?

Dawn, I've not heard of Cadiz, but my husband has. What symptoms do you have with your disease that affects your entire body?

Thanks.

Linda

Hi Linda,

Welcome to the forum we all here to help and provide information as best we can?

Right regarding diagnosis according to Prof Hughes and the NHS notes on diagnosis you are diagnosed by either have 2 seperate posatives on the blood tests or if like some people you are seronegative you are diagnosed on medical and family history.

Regarding symptoms hav a look at this other blog which has been going where memebers have been liksting there symptoms may be worth comparing.

hughes-syndrome.healthunloc...

Paddy

Well, I called the APS Foundation of America in Wisconsin. I talked with a really nice woman who has APS herself, and she wasn't convinced that my vaculitis doctor is right about my not having APS because my "antibody numbers aren't high enough." So, she had me write to one of their researchers who happens to be at CCF, as well, about my tests and history, to give his thoughts.

What do all of you take for your condition? Have all of you had clots not caused by something, like an IV or PICC line?

I'm sorry to ask so much. I have just never, before today, heard of this, and now I'm flipping out thinking I could have a stroke at any time!

Linda

Oh, and thank you, Paddy, for directing me to that symptom posting. It was really helpful. I was amazed at how many of those symptoms I shared, nearly every one of them.

Hi Linda, I am what is called seronegative, so I score zero on the blood tests LOL!! Prof Hughes diagnosed me on clinical history after I had a stroke last year. I have also had a PE and numerous other symptoms.

I could not tolerate warfarin so am on low weight heparin. prof says they work very differently. I could not tolerate Aspirin either. I also have Hashimotos, Sjogrens, Cardiac Syndrome X, Fibromyalgia and CFS. I also have a tendency towards Celiac and prof says these conditions are all linked.

I do hope you get a dx soon and get whatever treatment you need for your symptoms. Remember stressing about this is only going to make things worse so try and be as calm as you can. As my mum used to say "Stressing is not going to change anything - just makes you feel worse!". It sounds like you are getting there so Im sure it won't be long before you get some answers.

Good Luck

Thank you so much. Yes, my mom says the same thing. Worrying about it isn't going to change anything, she always says. But, it's so hard not to worry. I'm reminded of this story I heard on the radio a few years ago about a woman who had an x-ray done for some reason and the x-ray showed some type of metal object close to her spine. She was asked if she had had back surgery, and she said yes, many years before. Why? "Well, it looks like the surgeon left a surgical instrument in you, and it's so near your spine that if it moves, you may be paralyzed. She was afraid to move after that, while for years she was very active, not knowing about the threat she lived with every day. Someone asked her, "So what's different now than it was just yesterday? You had the tool then, you have it now." She said, "Yes, but now I know." It's the "I know" where I'm at now. I've been fine for awhile, but now I know, and I'm terrified that the migraines I have all of the time are now pre-cursers to a stroke, or the chest pain I have sometimes is now a heart attack. I'm driving myself crazy. I'm glad you all are here to talk to. My husband just doesn't get it. He lives in denial a lot. This is going to be no different.

Linda

Hi Linda

welcome and glad you found us, sorry to hear you got so much going on with your health.

My beta 2 glycoprotein tests negative, but am positive for the confusingly named lupus anticoagulant, which gives a diagnosis of Aps (along with clinical symptoms). Nothing to do with Lupus. Although I do have lupus symptoms overlap etc, etc..

I had an at the time unexplained dvt and pe, many miscarriages plus various other symptoms.

Take many meds for other conditions, but main ones for Aps are warfarin (coumadin) and plaquenil. Plus pain relief.

I know its scary, but we here to help if we can. Feel free to ask, rant etc.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

Hi Linda

Welcome to the club! I am sure you will find the site a good tool for learning about Hughes and make nice contacts, I see you have already heard from some other members in Ohio.

I went down age 45 with Hughes with a stroke mid flight in Feb 2007 (5 years ago) cabin pressure triggered it, I had a similar experience mid flight Chicago to London in 1998. I take warfarin and need a higher inr than most people inr 4 to 5, i take plaquenil to help fatigue and bone muscle pain and gabapentin for stroke pain.

I started my own business in 2008 and work full time. So as you can see its not all doom and gloom, we are all just waiting for a cure!

Good luck for the future.

Garry (one of a few men with Hughes!)

Hi Linda and welcome

I'm Dave from near Bath in the west of the UK.

I'm sure that you will find lots of supportive 'new friends' on here and you will soon not feel alone in this. We all suffer from a wide range of symptoms and there will be many people who have the same or similar symptoms to yours.

I'm glad that you have spoken to the APS Foundation of America. You probably spoke to Tina, who is their President and she is seronegative APS and has suffered a lot like the rest of us on here. They produce a very good quarterly newsletter which, together with the support from us all on here, will I hope help you to understand APS and cope with the symptoms.

Very best wishes.

Dave

Hi Linda, I'm Gina from West Virginia. And THERES something you can be thankful for. Getting a diagnosis and some attention from a doctor has GOT to be easier in Ohio then in West Virginia (LOL.) Yes, its a scary diagnosis and yes there are a lot of scary unknowns. But most of us are able to hit upon a stable medical/activity routine. A suggestion: Take your nervous energy and put it into making a chart/list of relevant symptoms by date over the past . . . month? . . . week? . . . year? Sign HIPPA forms from old doctors, hospitals, clincis and compile your own medical history chart so that all your records -- particularly blood work -- are all in one place, organized by date (most recent to past.) This will give you something constructive to do with your energy and it may provide some valuable information to whatever doctor eventually follows up on your case.

Of course if you've already done this you can head to a bookstore. I was the anonymous interviewee for the Hughes chapter in the book, "The Autoimmune Connection" which has a brief overview of a lot of autoimmune illnesses. Many of us have multiple autoimmune diagnoses (though many of us do not.) It may help to become comfortable reading other stories and familiarizing yourself with the various overlapping symptoms. You may spot associations that can point to easy, drug free behavior modification. For example, I found I have a gluten allergy and when I went gluten free all my blood work, ALL my blood work, returned to "normal" within 6 months. Of course, I still have Hughes, I'll always have Hughes, I'll always be on warfarin, but the gluten free diet has made quite a difference.

Post here. Post often. We're listening (or should I say 'reading?')

Hi Linda that is great you found the aps foundation you aka have as Mary said the American aps association Mary posted link above. You also have the Hughes syndrome foundation with a number of good books and info WWW.Hughes-syndrome.org you can also look at this blog I posted which has useful materials and also a letter written to help family members understand where we are coming from hughes-syndrome.healthunloc...

Paddy

hi Linda - i like my auntie sheena - dvt , pe is a result of the dvt. . i have L. A. and a.p.s. ,, also major problems with protien s and c deficiecy s. hyperlipidemia, migraine with aura, benign tremor ,tremor essential ,a.v.n. ,osteoarthritis , fatigue and my most resent , obstuctive sleep apnea.today i go to dartmouth to discuss a possible low "" T " count. i am on warfarin and hydroxychloroquine [ plaquenil ] . pravastatin , niacin , fish oil and multi vitamin. we all have .different pains , but some very similar . i also have a memory problem of which i have learned to just laugh at . as you are being told , dont let it make you worse with worry . its not easy but necessary, for mental well being ,. we are and will be here for you when ever you need us . remember laughter good medicine when you can get there you will see. im here in N.H.- drop me a note any time you want or need-------- jet p.s. im just that type away.

Hi Linda,

My name is Joni and I'm in Michigan. Another resource to look at is the APS Foundation of America (apsfa.org). They also have a supportive online forum that I've gotten a lot of information and support from.

Good luck to you in this journey. Isn't it nice to know you're not alone?

Joni

Okay, now I'm sitting here crying because of so much support. What an awesome group of lovely people you are. I don't know that I've ever received this nice a welcome anywhere before. Heck, my own family doesn't show me this much support. Wow. I really don't feel alone right now, and that's saying something. I'm still scared, but I'm holding it together, at least. My husband just asked me how I'm doing it because he said he's not handling it very well. I honestly think I'm in shock. I couldn't sleep last night, just tossed and turned. Ugh. Haven't heard from Dr. McCrea yet. Am very anxious to hear from him. He's from CCF and is one of the Foundation's top researchers. He's the one Tina (yes, she's who I spoke with at the foundation. She was so great, and had me laughing hysterically) said to contact. I'll let you all know what he says. I'm sorry to ramble so. My mind isn't what it used to be anyway, and right now, I feel like my head is a major bubble.

Thank you again for being so kind and supportive. It really has made a difference for me. Thank you, thank you, thank you.

Linda

pumpkincake profile image
pumpkincake in reply to Lindajoy

Hey Linda

I live in Akron Ohio. I am actually going to see Dr. McCrae this coming Monday at Cleveland Clinic. It will be my first appointment with him. I actually have been on the apsfa.org forum since 2006 but had not been using it much but recently have been back there again. I found Dr. McCrae through that website. How was the vascular doc there?

Let me know whats going on and I will keep you in the loop too!

As you probably have read from different posts that you can have a seronegative APS where your blood tests are negative. The diagnosis is built upon your symptoms and events at that point. I have had positive and negative tests throughout the 20 years I have been diagnosed. I recently asked the question about antibodies coming and going too. seems it happens as I have experienced...I worried because I thought I might have been misdiagnosed 20 years ago and docs should have figured out what was wrong if it wasnt APS/Hughes. Long story short...after the symptoms and CVA's I would be on lifelong anticoagulation anyway. Half the stress with these dang diseases are not knowing. Seems like it is so much easier to pick up and move on the best we can when we know what "it" is.

Hang in there Linda. Have to tell you I dont have alot of family support at all besides my two daughters. I have been divorced 17 years and single since then. This stuff gets stressful. It is normal. I agree with you that I have gotten more support from this forum and the people surrounding it then I have at any time in these past 20 years. That says ALOT!

well...now we know each other!

Hang in there and post often!

Beverly

Hi Linda, so pleased this site is helping you. I am seronegative APS, and i have many symptoms. Prof Hughes diagnosed me in 2005, with APS, Sjogrens/Lupus. I have suffered for many years, but it was when i had a anaphalaxis with a severe reaction to a drug i was given.resulting in body having a serious flare. Prof Hughes stipulated to me, to not let anyone tell me that i did not have my conditions. I have been on warfarin since 2005, and other medication. My cousin who lives in Australia was diagnosed with APS, after having her veins stripped, she developed a clot. I have many clinical symptoms. Keep your head up high, and remember it is your body, and you that is feeling these symptoms. Good luck, and best wishes.

Hi, Beverly. Good luck at Cleveland Clinic. I'm so glad you're seeing Dr. McCrea. I saw Dr. Bartholomew in Vasculitic medicine, and he is so nice. He returns all of my emails promptly, which is really unusual for the head of a department at a top hospital. I just don't think he's right with regard to my not having APS when I've had two positive antibody tests, 5 years apart. And, I've had clots--triggered by PICC line and IV, but still...

Beverly, if you, or anyone here, would like to keep in touch personally by email, here's my email address: poetess1_26@yahoo.com I hope it's okay to put that here. Jet--thank you for the offer to write to you any time. I just may take you up on that.

Speaking of doing something with all this nervous energy. I have had my records organized for years, but that was a good suggestion. My husband is putting his nervous energy into vacuuming the house. I like it when he gets nervous! I think I'll go outside. It's a nice day today.

Have any of you seen Dr. McCrae for your illness? Thoughts? Is he good about communication; ie, returning emails?

I'm so glad to have found all of you. Take care, everyone.

Linda

Beverly: Wanted to let you know that I just spoke with CCF, Dr. McCrae's office, and he is out of the office on emergency and won't be back until possibly middle of next week. Did you know that? Maybe you should call before you head out?

And wanted to ask: Can APS cause catastrophic GI problems? I have a lot of symptoms after I eat. Sometimes the pain is so bad, I fear I'll die. Can APS actually cause some fatal GI problem? What GI symptoms are typical with APS? What should I look for in something that needs immediate attention?

Thanks again.

Linda

Linda, as far as APS goes the symptoms are way more important than the test result numbers. I live in Pennsylvania and was diagnosed in 1995. Although you have had clots, it sounds like they have all been precipitated by other things and not just "out of the blue for no reason". APS has TONS of symptoms but most of them revolve around the clotting of the blood. Most people are diagnosed purely by the clots. I myself had two miscarriages, several DVT's in my legs, blood clots in my lungs, a full term still birth and a premature baby delivered at 30 weeks due to blood clots in the cord. I guess what I'm saying is from the sounds of your symptoms.... my guess is that APS is not going to be your issue. Unfortunately you do have unusual medical issues.... as my doctor says "why can't you get anything normal" lol I think this site is wonderful for support and friendship whether you have APS or not because those of us with unusual medical conditions need the help and support of those who understand the frustration.

Best of luck to you in your search for answers. My prayers will be with you and please keep us informed!!

Dianne

Hi Linda,

I understand that you are terrified. I just found out that I have Hughes a little while ago because I suffered a TIA attack. You have come to the right place. The people on this site are so caring, and understanding because we all live with Hughes. Being sick is frustrating and not understanding why is very frustrating. Let us know how you make out!!Best of luck to you in your search for answers!!My prayers are also with you!!:))

Thank you so much, Dianne and tandtsmith. I wanted to let you know that I spoke with a doctor in Utah, whose site was recommended to me by someone on this site, to have him check my blood for APS as his lab is considered the best in the US. I sent his tech an email, told them my story, and he actually called me back! He was kind, yet firm. He told me, in a nutshell, that I probably do have something autoimmune going on since I have the IgM antibody, and that I probably will clot with things like PICC lines and IV's over the normal, healthy population, but that I probably will not develop spontaneous clots, like those with Hughes, since I don't have a history like that and my antibodies are so low. Thus, I don't need to be treated for it unless I'm on an IV or something that may cause me to clot, as it has in the past, and to avoid PICC lines as much as possible. He made me feel a lot better.

So, do I have a clotting problem? Yes, but it is mild and, if I just take care while in a position like having an IV, whereby I know I may get a clot, I should be okay.

Thank you all so much for your support through this. Hughes will remain in the back of my mind as something I need to stay aware of, so I'm glad you all have been here to help me understand what I need to do to stay safe.

Take care and thanks.

Lindajoy

I, too, am wondering if all the things I have had for years is coming from aps. Some things I have had only once, but they are not really related so I have presumed how I got them such as doing too much paperwork for carpul tunnel; wreck for back surgery, but my back had many problems other than the slipped disc from the wreck & etc. I could go on & on.

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