juliegee Posted February 12, 2011 Report Share Posted February 12, 2011 Hey All-Just a quick update on me. A while back I had an appt. with a rheumy who began suspecting & looking for lots of scary stuff. Cancer has been ruled out via CT- I just have puffy lymph nodes PAH ruled out for now (just by echo, not catheterization.) My pulmonologist said I am HIGH risk of developing it due to my severe reynauds, diastolic dysfunction, etc all indicative of a systemic sclerosis of some sort. I will need to be checked often & may even began taking sidenalfil (viagra ) preventatively to calm the endothilial lining of my blood vessels that MAY prevent it from occurring. I failed my 2nd six minute walking test, sats 85 and dropping UNTIL the pulmonologist kept trying finger after finger with the pulse oximeter UNTIL he found my thumbs read 100%. He said THAT was my true oxygenation as the reynauds slows the blood flow during exercise to provide false readings. A genetic blood clotting disorder, like anti-phospholid syndrome, has been ruled out, BUT I may still be making small micro-embolisms in my arteries (fingers and toes) as a result of my severe reynauds. The resulting platelet activation & impaired fibrinolysis apparently render the blood more viscose. This same impairment is noted in MCAD. Double whammy for me I'll be using Plavix in the cold months and try aspirin & turmeric in the warmer months. I see a good cardiologist on 2/24 (at least I HOPE so!) to follow-up on the diastolic dysfunction/heart failure. Fingers crossed that that will be improved OR at least I will get an action plan for curtailing further heart damage. My rheumy wants me to start IVIG therapy for my hypogammaglobulinemia. She also thinks plaquenil, anti-TNF, and low dose steroids will help. I'll see....one thing at a time. Baby steps The BEST thing has been meeting so many incredible doctors right here in GA, who acknowledge rather than ignore my complicated issues. My new pulmonologist said it best: "You have a disease process occurring that we can NOT currently name. Therefore I can give you NO prognosis." Honesty. Isn't that what we all want??? He wants my docs to work together to put together their notes and send me to Mayo. Second doc to suggest that... Thank YOU for all of the support & advice. It's really helped during a dark time.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 12, 2011 Report Share Posted February 12, 2011 Keep us posted!(((((((((((((Julie)))))))))))))) Quote Link to comment Share on other sites More sharing options...
lieze Posted February 12, 2011 Report Share Posted February 12, 2011 It sounds like awesome news.I'm so sorry for all of the fear and worry you've experienced through this. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted February 13, 2011 Report Share Posted February 13, 2011 First off (((((((hugs)))))) and good luck with the road ahead.I just was wondering if you tested positive for Ehlers-Danlos Syndrome. (I can't remember a darn thing lately) I have EDS and also have some strange clotting issues. My d-dimer is always high; I clot on birth control pills, but they can't figure out WHY I clot. All genetic tests were negative. The doctors in Connecticut thought it might be due to my EDS; that because of the collagen / extracellular matrix being faulty my body isn't making the right proteins for appropriate clotting. I clot very fast!A friend of mine, also with EDS, has a clotting issue too. She can't take birth control and recently had micro-clots in her kidneys. They aren't sure why this was happening, but were also suggesting EDS as a possible cause. No studies to back this up though.Wishing you all the best! Sara Quote Link to comment Share on other sites More sharing options...
Noreen Posted February 13, 2011 Report Share Posted February 13, 2011 First off (((((((hugs)))))) and good luck with the road ahead.I just was wondering if you tested positive for Ehlers-Danlos Syndrome. (I can't remember a darn thing lately) I have EDS and also have some strange clotting issues. My d-dimer is always high; I clot on birth control pills, but they can't figure out WHY I clot. All genetic tests were negative. The doctors in Connecticut thought it might be due to my EDS; that because of the collagen / extracellular matrix being faulty my body isn't making the right proteins for appropriate clotting. I clot very fast!SaraHi Sara-Did you always clot fast or has there been a change as you aged?I, too, have EDS and clotting issues.noreen Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 13, 2011 Author Report Share Posted February 13, 2011 Thank you all for your support & comments! Yes, I found the blood clotting with EDS info interesting too. I don't have EDS, but I do have a connective tissue disease that is un-named for now. Not sure how my tendency towards embolisms interplays with that. The clotting issues (hyper-coagulation) are also seen in Raynaud's and MCAD. Ironically, the other side of the equation- excess bleeding is also seen in mast cell diseases. There is an imbalance between coagulation & fibrinolysis that can also manifest as nose bleeds, etc. Sara, you are exhibiting signs of hyper-coagulation. Are you taking aspirin or plavix to address this? Low blood volume could be one factor, but doesn't sound like that's telling the whole story. Where have you clots been? How did they manifest?I'm grateful for your input- Julie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 14, 2011 Report Share Posted February 14, 2011 Thank you for keeping us informed, Julie! I'm so glad that you have a doc or two who is willing to try to collaborate and get some answers for you. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted February 14, 2011 Report Share Posted February 14, 2011 That is awesome news!! So happy for you!Are they going to do a couple more echos still?? Did you find out anything more about the dystolic disfunction? Let us know more when you find out! :] Quote Link to comment Share on other sites More sharing options...
targs66 Posted February 14, 2011 Report Share Posted February 14, 2011 Very glad that you got the no-cancer dx.... but I'm sorry to hear about all the other health complexities.I also have some hyper-coagulating issues - have had to have blood re-drawn over and over b/c it apparently clots much more than normal (it has to go in the tube w/out coagulants). (My GP won't examine this further; says that's just how some people are.)Anyways, I've read that people tend to consume far too much omega 6 in proportion to low amounts of omega 3 fat in a typical "Western" diet. One food that is apparently high in omega 6 is peanut butter -- and I live on the stuff. (I've had pb on toast for breakfast for about 20 years now... ) ... AND that one problem with this imbalance (excess omega 6) is that it can cause hyper coagulation.I don't have a scientific background, and realize that I don't fully understand the big picture (and that we can't believe everythign we read online!)-- but thought this information might be helpful. Anyone with more info, please chime in! And keep us posted, Julie. I wish you all the best. Quote Link to comment Share on other sites More sharing options...
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