I was diagnosed with MS 2 years ago. According to MS neurologist, I was a slam dunk case. I am not so convinced. I have had bouts of daily headaches for years that they say don't fit migraine, but can't tell me why either. They don't respond to anything, even typical migraine medicines. Heavy narcotics have been used when it was so bad I went to the hospital on several occasions, but that only helped until the drugs wore off. I started to develop what I thought was a livedo rash and my neurologist was so rude to me and dismissive saying you have MS, deal with it. So I went to a rheumatologist on my own. She knows about Hughes and lupus and did a battery of tests. Confirmed that I do have livedo and my lupus anticoagulant came back strongly positive. BUT, she wouldn't consider treating me for Hughes because I haven't had an event. I told her I had severe preeclampsia when pregnant and was in the hospital but they were able to keep me pregnant til 36 weeks. The criteria is 34 weeks. I brought a bunch of research articles about Hughes mimicking MS or going along side it. She got very irritated and said if the neurologist thinks you have MS, then you do. End of story. I even consulted a hematologist who is experienced with Hughes. He wouldn't even hear of a anticoagulation trial because of lack of an event. A couple of months ago, I emailed Dr. Hughes and he replied. Extremely nice man! He said it is a huge possibility that I could have been misdiagnosed as it happens all the time with MS. I guess what I'm finding in the U.S., is that even with doctors who claim to be APS specialists (they won't call it Hughes here's), they are so adamant that it is rare and only present if the strict criteria is met. Maybe it really is MS, but my heart tells me the red flags are there and I should be persistent in finding out for sure. I don't know where to turn.
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