Hi all, I'm new here. I live on Maui, I have a fabulous neurologist who specializes in MS; he's had an impressive medical career on the mainland and recently moved out here. That said, I do live on an island which offers a more rural level of testing and care avaiable. I am a 40 yo home health nurse married to my favorite fire fighter, we have a teen and a tween.
Last month I finished up the testing available to me-I've had MRIs of my head and spine, and a lumbar puncture. My LP was negative, and I had a few 2-3 CM lesions in my brain, none in my spinal column. Going off that information, I was hopeful my neuro would say it was a wait and see situation. However, because of my symptoms and the placement of my lesions, he's about 80% sure I have MS and said I could start Copaxone.
My main symptoms include nystagmus, brain fog, fatigue, and urinary retention. I do have R calf pain but I'm trying to blame that on my 30lb weight gain in the last year, lol. I am very heat intolerant, and along with a huge exacerbation of my symptoms while in the heat, I get a headache and become dizzy.
So here's my question (finally! LOL): How do you talk to others about your diagnosis if you don't actually have a positive diagnosis? "The doctors think I have MS" or " I most likely have MS"? Or do you just say you have MS? The few people I have told "I probably have MS" want to know what that means, it's not only a pain to explain but some people seem to think if I don't have the diagnosis I don't have the symptoms either.
To be clear, I don't mean how you discuss this with family and close friends-we have been very explanitory with them as they really want to know and are invested in my well-being. How do you tell other people you interact with regularly and notice that somethings going on with you?
Last month I finished up the testing available to me-I've had MRIs of my head and spine, and a lumbar puncture. My LP was negative, and I had a few 2-3 CM lesions in my brain, none in my spinal column. Going off that information, I was hopeful my neuro would say it was a wait and see situation. However, because of my symptoms and the placement of my lesions, he's about 80% sure I have MS and said I could start Copaxone.
My main symptoms include nystagmus, brain fog, fatigue, and urinary retention. I do have R calf pain but I'm trying to blame that on my 30lb weight gain in the last year, lol. I am very heat intolerant, and along with a huge exacerbation of my symptoms while in the heat, I get a headache and become dizzy.
So here's my question (finally! LOL): How do you talk to others about your diagnosis if you don't actually have a positive diagnosis? "The doctors think I have MS" or " I most likely have MS"? Or do you just say you have MS? The few people I have told "I probably have MS" want to know what that means, it's not only a pain to explain but some people seem to think if I don't have the diagnosis I don't have the symptoms either.
To be clear, I don't mean how you discuss this with family and close friends-we have been very explanitory with them as they really want to know and are invested in my well-being. How do you tell other people you interact with regularly and notice that somethings going on with you?
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