Hey all, relatively new here to the forum and to my MS diagnosis in April earlier this year.
Initially I had a CIS in Dec 2018 of a numb left foot that lasted a few weeks and the went away completely until July 2019 when the left side of my torso when numb. A couple of specialists, x-rays, and MRI's later, the neurologist diagnosed me with RRMS. None of my symptoms since July 2019 have gone away, only worsened. Being August 2020 I am starting to wonder when the "remitting" part comes into play, if at all.
I have been doing some reading and can't help but wonder if I actually have PPMS, as my symptoms have been around for over a year with no improvement. On my MRI in March this year, I also had more lesions on my C-spine than on my brain. I, however, am not a neurologist.
I emailed the nurse at the clinic and asked if it was a possibility and she was very terse in her reply and simply said "You do not have PPMS. You have relapsing MS. Dr. **** will order an MRI at your follow-up in November." and that is copy/pasted directly (aside from editing the Dr's name obviously). That was the entire email. It did nothing to alleviate my concerns whatsoever.
I am currently taking Tecfidera (started 14 weeks ago), and I don't see the neurologist again until November, but if I slowly keep getting worse, would they take me off Tecfidera and reevaluate my symptoms, and possibly my diagnosis? Am I wasting time waiting out the 6 months when I could be taking a more effective medication?
I would appreciate anyone's thoughts or experiences with RRMS that doesn't remit, or with PPMS, or if they had been, for lack of a better word, misdiagnosed. How long til the doctor(s) reevaluated the dx and changed it?
I know that MS progresses and RRMS shifts into progressive forms, but I am asking more so about people that were diagnosed with PPMS from the start or were diagnosed with RRMS but actually had PPMS initially.
Thank you so much for any responses or shared experiences.
Initially I had a CIS in Dec 2018 of a numb left foot that lasted a few weeks and the went away completely until July 2019 when the left side of my torso when numb. A couple of specialists, x-rays, and MRI's later, the neurologist diagnosed me with RRMS. None of my symptoms since July 2019 have gone away, only worsened. Being August 2020 I am starting to wonder when the "remitting" part comes into play, if at all.
I have been doing some reading and can't help but wonder if I actually have PPMS, as my symptoms have been around for over a year with no improvement. On my MRI in March this year, I also had more lesions on my C-spine than on my brain. I, however, am not a neurologist.
I emailed the nurse at the clinic and asked if it was a possibility and she was very terse in her reply and simply said "You do not have PPMS. You have relapsing MS. Dr. **** will order an MRI at your follow-up in November." and that is copy/pasted directly (aside from editing the Dr's name obviously). That was the entire email. It did nothing to alleviate my concerns whatsoever.
I am currently taking Tecfidera (started 14 weeks ago), and I don't see the neurologist again until November, but if I slowly keep getting worse, would they take me off Tecfidera and reevaluate my symptoms, and possibly my diagnosis? Am I wasting time waiting out the 6 months when I could be taking a more effective medication?
I would appreciate anyone's thoughts or experiences with RRMS that doesn't remit, or with PPMS, or if they had been, for lack of a better word, misdiagnosed. How long til the doctor(s) reevaluated the dx and changed it?
I know that MS progresses and RRMS shifts into progressive forms, but I am asking more so about people that were diagnosed with PPMS from the start or were diagnosed with RRMS but actually had PPMS initially.
Thank you so much for any responses or shared experiences.
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