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 Moderated by: Tina, Staff, Heidi
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 Posted: Friday September 29th, 2006 11:23 pm
   
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:!!!!: The Founders & Staff of this forum are not medical doctors. :!!!!: 

The Founders, Administrator(s), Assistant(s), Helpers, Greeters & Staff of this forum are not medical doctors.  APS Foundation of America is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America is not intended to diagnose, treat, or cure. This site is for informational purposes only. Additionally, while APS Foundation of America, Inc. frequently updates its content, medical information changes rapidly, therefore some information may be out of date.

If you think you may have a medical emergency, call your doctor or 911 immediately.

APS Foundation of America will be building a database with this information for future mailings. Please note that we will be listing all donor or purchaser's names on the Donor page of our foundation site. If you do not want your name listed, please contact us to opt out. Your information will be kept confidential and not sold to or shared with any third parties.

If you use the forum or chat room, you are solely responsible for your own communications, the consequences of posting those communications, and your reliance on any communications found in those areas. APS Friends & Support and its licensors are not responsible for the consequences of any communications in the forum or chat room. If you give your personal information to a host or other member and later threaten to hurt yourself or others we reserve the right to contact appropriate authorities, however, no guarantee is made that someone will contact emergency personnel for you. We are not equipped to handle these types of crisis situations. You should contact your local law enforcement agency immediately. If you think you may have a medical emergency, call your doctor or 911 immediately.


All About Tina 

I have had a long battle with Seronegative APS (SNAPS).  I was finally diagnosed in 2002.  It is formally documented in my records as Thrombophilia with clinical features of APS.  I also have Thrombophilia secondary to Lipoprotein(a), Livedo and Raynaud’s.

My problems started out in grade school when I developed Fifth Disease.  After that I started having problems with headaches and bloody noses.  In high school, I got the Epstein Barr Virus (EBV) and never have been the same since. I had dizzy (vertigo) spells most of my high school and my first parts of college. My blood pressure would spike during those times.  I would have problems seeing and speaking, my body would twitch and I would have these horrible headaches.  I was told that it was anxiety and that I didn’t want to be in school.  I was an A/B student.  From 1985 to 1992, I really wasn't feeling well at all. I got a reprieve and finished my degree in Public Health Education and started getting active with the US Coast Guard & Auxiliary in hopes of being accepted into Officer Candidate School.  But in 2000 I started having more neurological problems and unfortunately, was forced to stop pursuing the dream of being an Officer in the US Coast Guard.

It started again one summer night in 2002.  I had a TIA (transient ischemic attack) with an amaurosis fugax (temporarily loss of vision in the eye). The ER felt it was a migraine, as I was "too young to have these kinds of problems". They started me on aspirin and I stopped the birth control I was taking.  I sensed there was a bigger problem at play. Two months later I ended up in the hospital with a DVT (Deep Vein Thrombosis).  I was started on Coumadin® and after much trial and error my therapeutic range was set at 3.5-4.5 because I managed to re-clot on Coumadin®.   However, since being placed on Plaquenil®, in 2006, we have been able to reduce my INR to 2.5-3.5.  I still have TIAs despite having a therapeutic INR and being on aspirin and Plaquenil®. 

Getting doctors to listen to me and take me serious has been a battle, especially in the ER. I never got a full clotting panel until I started pushing for answers.  That is when I got one positive test that was “equivocal”.  Because of this, I started a medical symptoms journal to help track my…elaborate on this. I also started a photo journal for the times that my face is drooping but I know by time I get to the ER or call 911 and actually get seen it will be better. I have shown these pictures to my neurologist who said that yes that is a TIA that is triggering the migraines, specifically verterbrobasliar TIAs. The pictures I had been taking helped save me and get the diagnosis. The neurologist also felt what I was having in high school and college were TIAs, not the panic attacks they thought I was having.  I also take pictures of the various rashes that I get.  Those pictures have also helped me get on Plaquenil®.  They have helped me get better treatment options from my dermatologist.  I have the left sided weakness & balance issues, documented by an independent physical therapist, which are consistent with her 80 year stroke patients.  That specific therapy session was actually a good day for me physically, if that says anything. Sadly, the verterbrobasliar TIAs are building up have caused hearing loss and they suspect is causing the increased loss of balance.

I have also had a heart attack. The ER thought it was “acid reflux” and sent me home. After not feeling well for two months, I finally pushed for an answer and they did a perfusion study of my heart.  They found a previous posterior MI (Myocardial Infarction) also known as a heart attack.  One and a half years later, the angiogram shows my arteries clear so of course it was “acid reflux” and that perfusion study must have just been wrong. It was ultimately decided that I may have Cardiac Syndrome X. Other than the supraventricular tachycardia, the occasional run of PVCsPACs and mitral valve prolapse that has gotten more pronounced over the years; it is ok.  My kidneys have decided to give me problems but that seems to come and go also but is always blamed on hormones or salt even though I watch my salt intake.

As time has gone on, my Raynauds/Livedo has gotten worse.  My vertigo is coming back, which the neurologist, ENT and GP have decided was a microvascular issue many years ago.  My headaches are getting worse again too.  My guess is that it is connected to the Raynauds/livedo which is also microvascular.  I have problems with cystitis that seems to only come with a flare.   The urologist feels this is due to microvasuclar changes in my bladder from my autoimmune & clotting problems. 

My rheumatologist has decided to diagnosis me with a “touch of Lupus”.  They won’t call it full Lupus because all the sudden don’t have enough symptoms or my blood work is “ok” again.  I guess you need to have everything happening at once to get a real diagnosis. 

Looking back, I was never really healthy.  I always had some sort of cold, some sort of ear infection, always taking antibiotics or Dimetapp.  I was always tired and just never could keep up with my classmates.  I was always cold and would turn all these funny shades of red, white and purplish/blue.  At the time, we just thought I got frostbite easy.  I never really did ok in the sun.  I got “sun sick” very easy.  Now I wonder how long I really was sick.

I guess all of this is my “new normal”.  I have learned to keep fighting and pushing for answers and to keep listening my intuition; my gut feelings are generally right on.  But in the end, I am told there is nothing more they can do for me. 

There are times I think I can get back to normal. But every time, I start getting back to my old "normal" or picking up my pace my INR drops or something else happens.  I just wish I could  predict how I will feel later on that week or the next day, etc.  Vertigo is my biggest problem and now these recurring TIAs.  APS makes it very hard to hold down a paying job and live a normal life. 

I can no longer do contract work or teach EMS classes because of memory & health issues.  I just go with it day by day do lots of volunteering. 

Tina :angel:

All About Heidi & Todd

Hello. My name is Heidi and I am 33 yrs old. Let me start off by saying that I do not have APS. My husband, Todd, does. He is 35 and we’ve been married since 2001, but have been together since 1995. We live in Michigan, USA in a suburb of Detroit. I work full time for a major health insurance company (Thank God too, we have very good health insurance) and Todd is currently working at Sears. This is actually his 3rd job since he was diagnosed. He has a hard time working because he needs time off for doctor appointments and ER visits. Employers just don’t understand employees being ill.

We don’t have any children but we have opened our home to 2 spoiled rotten pups and 4 crazy kitties that we lovingly call our “zoo.” We do hope to have children in the future. As of right now, we are leaning towards adoption though because there is too much unknown (in our opinion) about whether APS can be passed along in families. Plus, there are plenty of children out there who need a good home.

I don’t know very much about Todd’s health when he was growing up. I know he has broken a lot of bones and had a surgery on his eyes when he was fairly young and a few other unrelated surgeries, but I don’t think there was anything specific to indicate that he’s had APS all his life.

His problems with the “mystery illness” started in 2000. He was hospitalized for a pleural effusion and his lymph nodes were enlarged. They did a biopsy and he was diagnosed with CMV and sent home. He had chest pains on and off for months (years actually) and the fluid around his heart eventually moved to being around his lungs, so he was hospitalized again in 2003 to have surgery to drain the fluid from around his lung. He was tested for Lupus those past two times and he tested negative.

In July of 2004 he was hospitalized for a DVT in his calf and he finally got the APS diagnosis. I truly believe that his health problems from 2000 on have all been related to APS. We think that it was the CMV in 2000 that “triggered” the APS, and that he didn’t have a clotting incident until the DVT in 2004.

Since his APS diagnosis he has had numerous TIAs (11 in 2006 alone) has also been diagnosed with vertigo, Raynaud's, Sjogren's, possible Neuropathy, Sticky Platelet Syndrome, osteopenia in his spine and he had a hole in his heart. In September, 2005, he started having Migraines as well. In 2006 he was diagnosed with 2 other clotting disorders, one inherited. I don’t remember the names of them; I will have to get that from his doctor.

In April, 2006 he had his first TIA in a therapeutic INR range. He had the hole in his heart patched in June, 2006 and since then he’s been TIA free as far as we know. However, his migraines have severely increased since then.

In July, 2006 he was scheduled for a non-APS surgery and it was cancelled due to an abnormal EKG. He was having bigeminy and PVC’s and PAC’s. He was connected to a 48 hour heart monitor and was put on medication for his racing heartbeat.

In August, 2006, he went through Rituxan chemotherapy infusions in hopes that it would help his APS symptoms. Unfortunately we found out in October, 2006 that the Rituxan did not work for Todd. In fact, it made some of his numbers go up. This doesn't mean it won't work for other people though, so if your doctor recommends it, Todd and I think it's worth a shot. It HAS worked for some people with APS and is being used for Lupus as well. It’s experimental though.

In 2007 Todd was put on long-term Lovenox to try and regulate anticoagulation. His INR was all over the place and was very hard to get under control, so this option was just easier on Todd and his doctors. He was put on a medication to control his cholesterol in 2007 as well. He takes about 7 or so medications daily, which I know is really nothing compared to some APS patients.

Todd sees a hematologist at Karmanos Cancer Institute in Detroit and she basically manages his care. He does have a Rheumy, Cardiologist, and a Neuro who he also sees. They’ve basically told us that they’re doing everything they can for him and that we should report any new findings. So we’re just sitting still until the disease progresses, if it is going to.

The one good thing, if you can call it a "good" thing, with Todd is that he ALWAYS tests positive for APS. He has the numbers and they are high. So we don't have to worry about the question of whether or not he has this disease. He does. Every time.

At one point I thought that Todd felt ok overall and he used to have a few good days a month. I do think that he’s been getting better, or else he tolerates everything better now. He has been getting out of the house more volunteering at a local animal shelter and I think the interaction with people has helped him tremendously. There’s a huge difference in his attitude and overall mental health now than there was 6 months ago and I think getting out of the house and getting some sort of a life back has really helped him with that.

We take things one day at a time really, and try to keep all of the Doctor appointments and tests dates straight.

We are trying to learn as much as we can so that we’re prepared for the future. There is just SO much to this disease, and because it’s considered “rare”, there are so many doctors who are in the dark about things. It’s a shame that there are people who have APS and cannot get proper care. We are SO thankful that we’ve found the doctors that Todd has.

We wholeheartedly believe that this disease is hereditary and will be passed on to any children we may have. My aunt on my father’s side has Lupus and with Todd having APS we believe that the risk of a baby being born with either APS or Lupus is not one that we’re willing to take. So as of right now, we’ve decided not to have children. We do have other options – adoption, sperm donor, foster – so we are planning on having a family at some point in our lives. Right now we are trying to get Todd’s disease and health in order before we start thinking about a family. This is our personal choice on the matter, and we may change our minds down the future, who knows. We may put it all in God’s hands and let nature takes its course. Only the future will tell.  

Thanks for reading,

Heidi & Todd :)



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APS Foundation of America is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America is not intended to diagnose, treat, or cure. This site is for informational purposes only. Additionally, while APS Foundation of America, Inc. frequently updates its content, medical information changes rapidly, therefore some information may be out of date.

If you think you may have a medical emergency, call your doctor or 911 immediately.

APS Foundation of America will be building a database with this information for future mailings. Please note that we will be listing all donor or purchaser's names on the Donor page of our foundation site. If you do not want your name listed, please contact us to opt out. Your information will be kept confidential and not sold to or shared with any third parties.

If you use the forum or chat room, you are solely responsible for your own communications, the consequences of posting those communications, and your reliance on any communications found in those areas. APS Friends & Support and its licensors are not responsible for the consequences of any communications in the forum or chat room. If you give your personal information to a host or other member and later threaten to hurt yourself or others we reserve the right to contact appropriate authorities, however, no guarantee is made that someone will contact emergency personnel for you. We are not equipped to handle these types of crisis situations. You should contact your local law enforcement agency immediately. If you think you may have a medical emergency, call your doctor or 911 immediately.

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