So the MS clinic which is 2 hours away from me will be seeing me tomorrow. They had told me last November they would not see me again as my PCP should consider APS as I tested positive for antiphospholipid antibodies. The hematologist refuses to put me on an anticoagulant saying he will only do so after a thrombotic incident which if I do have one can prove to be fatal. How reassuring!!! After refusing to be dismissed by another doc he promised to get me a new neuro and a doc who specializes in blood clots. I have not heard from them about any appointments for either.
Truthfully, I am so indifferent to all that's happening. It's like I have given up as there is not an agreement among all the docs I have seen as to what is really wrong with me. I found out that sometimes it is almost impossible to differentiate between both conditions as the presentation is similar when it comes to lesions and clinical symptoms. The main difference is Obands in the CSF favors MS and I did have Obands. The thing is I could have both conditions.
I feel like a robot. I am not even looking forward to the appointment as previous appointments have been brief and I only saw the neuro once and the other 2 times the NP and an intern. I am thinking maybe I should print out my findings from the NIH about the differences between MS and APS and show it to the neuro or NP. What do you think? Thanks for reading and I hope I will get some responses.
Thanks Alex. I totally understand but I have been so quiet and in the end just brushed aside. I am just tired as I am not a doc and I cannot diagnose and treat myself and so far no one is giving me a firm answer except the neuro in Florida who said it was MS. I live in Canada.
I hear you it took over 40 years from my first MS attack to be diagnosed with MS. It took two years to be diagnosed with Cancer. What I said to my doctor was "Something is terribly wrong with me I do not know what it is but something is really wrong".
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