Does anyone care about the little known illnesses?

[Lhrlovesmar]

I struggle with all various side-effects of having this little known blood disorder. I ask for help with legitiate questions but I'm not getting any help either from the public or the medical community. Why is that? Could it be ignorance toward this deadly, but highly treatable blood disorder? This has caused me to get eight (8) blood clots. That's four (4) in my left leg (1 in my knee, 3 in my ankle), one (1) in my right leg (knee), one (1) that traveled through the chambers of my heart causing my enzimes to rise thereby causing a heart attack, one (1) on my brain causing an Ischemic Stroke and lastly one (1) was attached somewhere, broke loose and traveled all through my body causing a T.I.A. I also have in addition to the Primary APS, Protein S Deficiency. That's all!
                                                                                                                Vertical Lee!

[mixedblessings]

HI
i fairly new to this medhelp forum so i can't say i'll be much help. when i read your post you keep repeating "this little unkown illness",, but i can't find in your post what it is called.in any case i find the people here very helpful and caring and of dealing with alot of health issues themselves. so sometimes it takes a while to reply to posts.
with regards to blood clots i have had several myself (canadian), and when the closts were first found i was treated with iv heperin in hospital for about 10 days and then switched to warafin (rat poisoning). the only problem is you need to assess your clotting levels thoughout the day because even a salad with greens can thin out your blood even more.
i  hope this helps somewhat

take care
mixedblessings

[kmil1999]

Doctors are taught not to look for Zebra's, thus only see horses even when zebra's are seen!  I am sorry that this has happened to you.

The only thing that will help you is to be the strongest advocate for yourself that you can.  You may have to do a lot of research on your own and also stand up for yourself.  Make sure that you take another person with you to all doctor/hospital visits that you have.  Not only do 2 sets of ears help, but for some reason, an outside opinion seems to help the doctor.

Best of luck,
K

[OldFatChick]

Hello, I am sorry you aren't finding the answers you are looking for. It may just be that the folks who have the answers you are looking for haven't been online. There is a website that is dedicated to APS: http://www.apsfa.org.  I don't know if you have checked it out or not, but they seem to have a lot of info.  Are you on anti-coagulants? That appears to be the treatment of choice.  Aspirin seems to work for some. If your doctor isn't familiar with the disease, you may need to see a specialist.  Are you currently seeing a rheumatologist?  If not, I'd recommend that as a place to start.  There is actually quite a bit of info on the web for both conditions.  What specific questions do you have?