New to MSAA Community

[HighTide]

Hello Everyone! I had been diagnosed with RRMS in 2009. Found out this past Thurs. it was wrong, actually PPMS. All these years of unnecessary DMT's, awful side effects and far too many infusions of Solumedrol. Be brave, power forward and as patients NEVER stop questioning your healthcare providers!

[melack01]

Welcome! I get good care, but since I get my care through the VA, I'm limited in my choices.

[SueAB]

HighTide ,Never forget that we are our own best advocate! There is so much info available for us to sort through and our MS journey is truly a learning experience! I also, was originally diagnosed as RR, but eventually moved into SP. Is it possible you have done the same?

[Jesmcd2 CommunityAmbassador]

Hi HighTide and welcome to the MSAA Community. Although the reason stinks. Really sorry to hear how your Dr.s seemed to have made a mistake? How did that happen tho? 😕 That's kinda scary.

Jes🌠

[HighTide]

Thanks for the welcome. The PPMS Dx is made retrospectively. I had asked my treating Neuro. for "more aggressive" treatment after having total hip replacement surgery this past June. I had this surgery because of all of the Solumedrol (over 9 years). That caused Avascular Necrosis and I can no longer have Solumedrol for Relapses. My treating Neurologist could not provide me with a plan should I have a relapse; he instructed me to go to a teaching hospital for a consult....I had my 9 year treatment record, MRI's, VEP's and another neurological exam. I really thought I would be working on a new treatment plan; not a new diagnosis. This is a real blow but I will re-center and return to being a positive- warrior in a little time.

[BigMar7]

Welcome our newest positive Warrior! Keeping a good attitude is important in fighting our MonSter.! So sorry you had a rough time. This site is great to learn about MS and share when things are bad. 😀