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I never have a time when I don't have symptoms any longer.

September 29, 2015
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A MyMSTeam Member

I think even with mri's doctors don't really know how individual lesions effect different people differently. Opinions have changed radically in the last ten years. If you're getting worse over a prolonged period of time, let's say a year, it might be time to change doctors/change therapies, or any variation of those.

October 1, 2015
A MyMSTeam Member

I asked my neuro if I had secondary progressive and he sort of evaded answering me. There are not very many meds for secondary progressive MS. If your MD changes your diagnosis your insurance may not cover ant DMDs you are on.

That being said I cannot remember when I had my last exacerbation, yet I seem to have new problems: decreased walking speed (I'm on Ampyra), more muscle spasms and tightness, and more balance issues. I've pretty much decide that I have moved to secondary progressive.

I really don't care which label for MS I'm given. I still have to deal with the issues MS presents regardless of whether it is RRMS or secondary progressive.

October 2, 2015
A MyMSTeam Member

I agree with@Williamjacobs. my disease progression had been pretty stable for about 10 years when my walking began to worsen. my neuro changed my DMT, but other things have worsened over 2 years until he finally agreed to change my prognosis to SPMS...that being said, he believes that if you were ever dx as RRMS, you are ALWAYS RRMS, just at a different stage, I guess. ..haven't figured that part out, or if it's just ME, cause my disease has ALWAYS been different than most people's

October 1, 2015
A MyMSTeam Member

When you have the same symptoms all the time and they do not live up , not being able to walk or stand in chronic fatigue all the time. Also bowel and bladder problems, daily

October 2, 2015
A MyMSTeam Member

Thank you PCM. Your answer has given me some much needed clarity.

October 2, 2015

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Huntington Park, CA