Welcome new Limbolander,
Sorry that you are joining us but I'm glad you found us!
It sounds as if you have been thought alot!
I can't do much on offering advice but I can lift you and these needs to the Lord in prayer and promise to pray daily for you.
We have the founder of this forum,Maria,that can offer more advice and Niko to whom is very knowledgeable. They will be along to comment soon.
Our little family here is special!
Wishing answers for you soon so you can get off this Medical Merry Go Round.
Hugs and blessings,
Tammy:)
Hi and goodness me you have been through the mill hun.
I find it exasperating that with all your symptoms they cant pin point something for you.
I would have said straight off Huges Syndrome (aNTIPHOSPHOLIPID). Why did they decide no, you even had the lupus markers?
http://www.hughes-syndrome.org/symptoms.htm
I take it you are on heparin or warferin to help stop the blood from clotting?
Huges is an auto immune disease, so i would think if you have one you might have another, which could be triggering something off.
I would look at Sarcoidosis.
I am sure you can have negative blood tests for hughes...because if you had blood clots wouldnt they have given you heparin and this would then I would think make subsequent tests negative??
Yes sneddons does fit, but so does Hughes....i think they need to go back to that diagnosis and do some more testing for it.
Either way i am really sorry you are going through such a horrendous time. xxx
I was put on Lovenox after my pulmonary embolisms. The two tests they did for the Lupus Anticoagulants were only 3 weeks apart. They have retested me a dozen or more times since then, and the tests have all been negative. It was explained to me that you have to have two positive test that have been done more than six weeks apart to meet criteria for diagnosis.
Just before my mini strokes in August, I had an anticoagulant work up. I had been on Pradaxa rather than the Lovenox for the past year. The Lupus Anticoagulant came back negative again. Then a month later, I had the mini strokes and went back on Lovenox. That's when the Von Willebrand and Factor 8 levels were tested.
I will have to ask about Lovenox invalidating the LA tests. I hadn't heard that before, but I know Lovenox affects results of other lab tests. Thanks for the information and your reply!
Thanks Tammy, I appreciate that you took the time to respond to my post! And I'll take all the thoughts and prayers I can get :)
Wow. You have really been through a lot!
Since your doctors have eliminated nearly everything else, it seems, I have to ask if you were ever evaluated for Lyme Disease? Some of what you describe are fairly common Lyme symptoms, but others are not. However, Lyme is very insidious and if affects different people in different ways. Some symptoms are really secondary, such as muscle twitching caused by low magnesium. Lyme uses up a body's magnesium in its reproductive process.
Whenever I think I have heard or read every weird symptom associated with Lyme, I hear a new one. Because it likes low oxygen environments, it goes for joints, connective tissue, the nerves, the brain, and various organs. Symptoms depend on where the bacteria ended up in one's body.
There are also coinfections that can complicate the presentation and make the Lyme worse. These are other tick borne diseases that come along for the ride.
You might try Googling Lyme and a symptom. For example,
"Lyme disease blood clots".
When I did this search, I saw multiple message board posts of people's experiences with blood clots and even PEs while they had Lyme. I found it helpful to read others' stories to see if I could find descriptions that matched mine.
What is important to know is that most doctors know very little about Lyme, especially the more advanced stages and symptoms. Also, many Lyme patients test false negative on blood tests. You need a Lyme Literate Medical Doctor who knows the disease well, and can make a clinical diagnosis when appropriate. Ideally you would get tested at IGeneX, a specialty lab that does more advanced testing. Sometimes, mainstream docs are willing to order IGeneX tests.
While you would have an unusual presentation of Lyme if you did have it, it seems worth checking out since your doctors are stumped. As my health was rapidly unravelling, I was evaluated for breathing disorders (misdiagnosed with asthma--the steroids given made me much worse by suppressing my immune system), MS, Sjogren's, cancer, and sarcoid. One doc said she believed I had chronic fatigue. My lupus anticoagulants were negative, but some other Lyme patients report positives. I have lots of little brain lesions, but the vision tests for MS were negative.
Many blood test results can switch from positive to negative and back with Lyme, which can be confusing. Symptoms can vary or come and go. Or they can set up house and stay.
My earliest chronic symptoms were wild hormone swings resulting in severe PMS and hemorrhagic ovarian cysts, chronic fatigue, light sensitivity, tinnitus, shortness of breath, and unexplained bouts of a sense of impending doom. Later, the tingling, numbness, balance, cognitive, digestion, and heart problems kicked in. Doesn't exactly sound like the official descriptions of Lyme Disease being a rash and joint pain. I can't really blame the doctors who saw me early on as nothing suggested Lyme Disease. My LLMD saved my life after a dozen doctors couldn't diagnose me.
I am tired today, so I hope I haven't rambled on too much or repeated myself!
You might check out the symptom list in this doc to see how many you have. There are others that aren't on this list, but they are less common (such as strokes).
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
Thanks for the suggestion- I have been tested for Lyme disease several times, luckily my doctor at the time was quite familiar with it. I am in KS, so it was a big possability.
I was also screened for West Nile, and my results did show I had been infected with it at some point, but the doctor that did the testing didn't think my symptoms are caused by it. Anymore I just don't know.
I may ask about being tested for Lyme again, at this point it can't hurt any!
I am glad you found a doctor that figured things out for you, and that you continue to reach out to people!