Newly diagnosed with PPMS and/or RRMS?

[jbell2435]

Hi - I've just found this website today, thank you. I was diagnosed with PPMS 4 weeks ago from the Mayo Clinic in Scottsdale, AZ. After the initial shock, sadness, anger, etc. and reading up I realized I've had symptoms for at least 2 yrs. Met with the MS team 1 wk ago and he said maybe it was RRMS or a little of both? I that unusual? I have so many questions...

2004 had bouts of vertigo for about 1 1/2 yrs, ENT dr sent me to neuro doc and ordered brain MRI which showed lesions and "possible" ms dx. ENT dr said I didn't have MS. Vertigo went away but feeling of imbalance never did.

2008/2009 had lost 45 lbs (on purpose) to look and feel my best turning 50 yrs old...starting limping and hip pain. Ortho doc said I probably over exercised and sent me to PT.

2010 weakness in R leg continued and got worse, having bad cramps in R calf, then developed foot drop. MRI of lumbar showed minor bulge in L4 but not explaining the sysmtoms.

2011 - Continued weakness in leg and unable to lift leg more than about 5 inches off ground, fatigue, unable to stand/walk more than about 5 min now. Sent to neuro in January to rule out anything but the disc, no tests done just minor coordination stuff, and no dx.

Last week MS team dr said maybe I might have RRMS and not PPMS??

I thought that RRMS started in 20-30's, with an acute attack, loss of vision or unable to walk?

I'm very confused....

[Redwings]

Hi jbell:

I can appreciate why you're confused. I'll give you my input, which I hope will be helpful in clearing some things up.

I thought that RRMS started in 20-30's, with an acute attack, loss of vision or unable to walk?

Many cases of RRMS present that way, but many don't. Some people are diagnosed in their 50s and 60s; 50% of people with MS never have vision trouble; many attacks aren't severe enough to make people unable to walk, and some people never lose their ability to walk. So if you let go of the incorrect idea that all cases present that way, cases that don't are easier to understand.

Met with the MS team 1 wk ago and he said maybe it was RRMS or a little of both? I that unusual? ... Last week MS team dr said maybe I might have RRMS and not PPMS??

There is a rare (about 5%) presentation of MS called progressive relapsing MS (http://www.nationalmssociety.org/abo...-ms/index.aspx). It's progressive MS (like PPMS) that also has relapses. The distinction between RRMS and PRMS is that there's no recovery from the relapses.

Is the "MS team" you're working with affiliated with the Mayo Clinic? If the team doctor has doubts about your diagnosis, then it's reasonable to expect that he would go back over your records, and perhaps consult with your diagnosing doctor, to review the rationale for your diagnosis. Regardless of the team's affiliation, if the team doctor opened that line of questioning (RRMS vs. PPMS vs. PRMS), he's the one who should pursue it. If he doesn't, then you certainly can.

[jbell2435]

Thank you Redwings. Yes, the dr. who questioned the dx is with the Mayo clinic, he is one of the younger ones, a fellow. The neuro who gave the dx is about 85 y/o, professor of neuro and medical director of neuro and he looked me straight in the eyes with the dx and never flinched. But I might add that I presented some new information after that, that didn't seem relevant at the first consult.

[NYJenn]

I think I am progressive relapsing. I do not fall neatly into RRMS or SPMS.

[Redwings]

Yes, the dr. who questioned the dx is with the Mayo clinic, he is one of the younger ones, a fellow. ... But I might add that I presented some new information after that, that didn't seem relevant at the first consult.

That sounds like the kind of complicated case a fellow should work up and learn from. Make him earn his stipend. And if it benefits you, so much the better.

[jbell2435]

Thank you!