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I have an undiagnosed or misdiagnosed condition. I am looking for anyone with similar experiences, input, or ideas.
2006 Small left pulmonary embolism treated with coumiden, followed 10 days later by a massive pulmonary embolism with an INR of 4.0. Subsequently I was put on Lovenox due to coumiden failure. Later that year I suffered a miscarriage.
2008 Pregnancy resulting in IUGR baby healthy but born at 3lbs. 15 oz due to placenta clotting between 8th-9th month.
2011 Switched from Lovenox to Pradaxa due to loss of insurance.
Aug 2012 "shower of mini clots to brain" put back on Lovenox.
I was initially diagnosed with Antiphospholipid Antibody Syndrome because of 2 positive Lupus Anticoagulant tests done right after my pulmonary embolisms. That diagnosis has been disputed because many subsequent tests for that have been negative. However, I do have elevated levels of the following from testing done this month.
Factor VIII level was 326% ref range below 150%
Von Willebrand Factor was 295% ref range below 150%
Von Willebrand Activity was 448% ref range below 170%
I have also had a consistently elevated WBC for 6 years ranging from 12,000-20,000 and has gone as high as 40,000 with lung infections.
My Kappa/Lambda ratio in urine was also found to be elevated within the last year. Initially started out as just the ratio, then subsequent testing showed Kappa was elevated as well. It is NOT found in my serum.
Kappa/Lambada ratio 16.84 ref rang 2.04-10.37
Kappa 79.00 ref rang 1.35-24.19
I have a history of recurring severe lung/sinus infections since childhood. I had decreased levels of IgG which resulted in a diagnosis of hypogammaglobulinanemia. That has since been disputed and many doctors now believe it was steroid induced. I also have a history of gastroparesis which comes and goes, and high blood pressure.
My symptoms include Livedo, headaches, vision issues, transient TIA episodes, severe muscle spasms that come and go, musle myalgia's, severe fatigue, discoid plaque like skin lesions (typically confined to lower legs, although have had on upper thighs, breast, and arms), and pain in my hip joints.
I have had 3 bone marrow biopsies, a kidney biopsy, and 3 skin biopsy. My last bone marrow biopsy showed a slight increase in plasma cells 7%, but not enough to diagnose mutiple myeloma. I have been tested for just about every autoimmune disease out there I think. I was scheduled for a VATS lung biopsy because my last CT showed tree-in-bud opacities, but had my mini strokes the week before so it was put on hold. My hematologist has brought up sarcoidosis, but other than that, he has no idea.
I think my worst fear is going through yet another biopsy only to be told "I don't know". The only other disorder I can find that seems to fit is Sneddon's syndrome, but I have not had much look with doctor's here being willing to consider something rare or outside their comfort zone. My hematologist said he had never even heard of it, although he was willing to research it. I am still waiting to hear back.
So any input, info, similar experience, or ideas I would love to hear them. I am ready to get off the medical mystery merri go round.
A high Kappa/Lambada ratio can be due to autoimmune disease, infection (persistent like TB), inflammation (IBS, Crohns, rheumatoid arthritis etc). It can also be due to monoclonal diseases such as plasma cell dyscrasias, lymphomas and leukaemias;, AL amyloidosis, and monoclonal gammopathy of undetermined significance (MGUS). Most of these can increase your risk of thrombotic events.
Also, at time lupus anticoagulant test is not enough to reach a diagnosis of anti-phospholipid syndrome. Anti-cardiolipin antibodies are also tested and if present, the diagnosis is almost confirmed. Apart from these, you do have clotting disorder. Please discuss this with your treating doctor. Take care!
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