My story began when I was in my 20's. I took a routine blood screening and was told to my horror that I had tested positive for syphilis! Well, after undergoing a more specific test for that disease I was told not to worry and that it was just a false positive. Every once in a while I'd get the same result on my blood test and was told after further testing that it was just a broad test and that I needn't worry. It came up when I had my prenatal blood work done during my first pregnancy and the doctor put me on a baby aspirin regimen for the duration but told me it was a pregnancy induced platelet issue that would resolve after giving birth. During my second pregnancy my test results were normal so I didn't take the aspirin at all. Then, finally, at 43 years old I woke up one morning and my feet felt tingly as if they had fallen "asleep". After 5 weeks of convincing myself that it was just a pinched nerve I finally visited my doctor who was quite alarmed. Thinking I had a dangerous spinal cord abnormality she sent me immediately for a lumbar MRI. When that proved negative she referred me to a neurologist who performed peripheral nerve tests (negative) and finally cervical and thoracic MRI's. Those images showed three lesions in my cervical and thoracic region that looked like hallmark MS lesions. My brain and optic nerve did not show any abnormalities which puzzled the neuro, so he sent me for a spinal tap. The results showed the typical MS banding in my spinal fluid and he proceeded to tell me what my MS treatment options were. I was beginning to experience extreme fatigue and brain fog by this time, as well. In the meantime I had done some research and heard of rare neurological manifestations of APS and asked if that might be relevant. I was referred to a Rheumatologist who spent about 10 minutes with me and then told me he didn't think it could be APS because I had no history of clotting. I was devastated, couldn't believe that I had MS! A week later, the Rheumatologist's office started leaving messages for me to call them back, but I was so disappointed in how he seemed to have just brushed me off that I ignored the calls for two weeks. Finally, I answered the phone and the doctor came on the line and said he had done more research after I left his office and he believed I may have APS after all. I really respect that he was willing to follow-up and admit that he may have been wrong. I went on hydroxychloroquine 400/day and a baby aspirin. My symptoms are almost negligible now and my MRI's have been stable for three years. I'd love to hear from anyone else who has atypical symptoms and how you control them?
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Mrmcb
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Hello and welcome, thank goodness you came across the odd medical detective on your path towards our forum! Your story is not unusual a lot of us have had misdiagnosis in the past or been told we are imagining serious symptoms. You will learn a lot on here, from other people's questions and histories. Feel free to ask us anything. MS and Hughes Syndrome/APS can present with similar or overlapping symptoms, including lesions! MaryF
Thanks for the welcome, everyone! I live in Southern California USA, near San Diego. My Rheumatologist is now managing my APS, I only check in with my Neurologist if I develop any new symptoms. I am one of the fortunate ones, I have very little residual disability and have not yet had a DVT or other life-threatening event. I do not have the physical stamina I used to have, but I am back to exercising and can enjoy life again!
I am very glad that you got a Rheumatologist that finally told you what was wrong. We have found so many of us (me included) that the Neurologists do not understand that we have too sticky blood and they do not know about HS/APS very well either. I had also micro-emboli and they are not discovered (seen because they are too tiny) on a Scan of today.
Do you have one of the three antibodies they test for HS/APS positive or two or even all three? I am triple-positive and Warfarin has been my lifesaver. I started with baby-Aspirin and it helped to begin with.
Yes, I was/am positive for Lupus Anticoagulant and anticardiolipid IgM. The Plaquenil (generic) and baby aspirin have been very helpful to me so far. Does anyone know if I can take a Vitamin K supplement along with Plaquenil to help with the bruising I experience? I've read that it is OK because Vitamin K uses a different mechanism to assist clotting and doesn't make the platelets sticky...
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IS my Dads ms diagnios wrong?
I've Re- clotted/ DVT/ I'm Ok!
Blood clots, pre eclamsia in first unsuccessful pregnancy. Now looking for a ray of hope in second.
MS probable, I wonder if i have hughes?
