[MSbelle]

I have a few questions for anyone with PPMS.... how quickly has your disease progression been? How old were you when you first started having symptoms? What's your lesion load like? Do you have a lot of spinal lesions (and few brain lesions)? Had anyone heard anything about chemotherapy treating PPMS?

I am 30, was diagnosed just over a year ago with RRMS, though my disease looks a lot more like PPMS (though my neuro won't dx me with PP yet since he wants to try DMDs with the hope it's RR). I have a lot of spinal lesions (even one at L1!). I also have brain lesions. My progression has been fast. I'm not sure if that's typical of PPMS or not. But I don't have remissions and I have had a couple times where I've felt like things got worse sort of suddenly, I have never recovered from anything. Most of my days are worse than the previous one.

I'd really like to hear from others. Thanks in advance.

[MSbelle]

I guess there's no answer to whether fast or slow progression is normal with PPMS because it could go either way.
How on Earth do you cope with this diagnosis? How long did it take for you to get the diagnosis? Did you know before that it was PP but first dx with RR?

[kicker]

Just read and saw a video about a Neurologist who has MS himself and feels it gives him insight into his MS patients. But he seemed very RR, is very pro-Tysabri and Talks about things that are not part of my PPMS so I got disenchanted quickly with him. My old Neurologist (who did not have MS) seemed a better fit for me.

Like love and literature, doctor choices are made on what we feel is a better fit.

[huntti]

I am new to this blog. I am one of those rare people that only have lesions in spine and have doubled in 9 months. My physician is surprised I am walking. I am increasingly numb in BLE but the only thing that helps my relapse is plasma exchange. I go through OMRF in case there is a trial for a drug that could help, but they do not have privleges anywhere to do this treatment. anyone else have only spinal lesions ?

[Aarcyn]

I think most of my lesions are spinal. I have so many lesions in both my spine and brain that protocol is to stop counting after 15. I received a similar comment from my neurologist sometime after year five of dx in that he was surprised I was not in a wheelchair full time.

[kicker]

Originally Posted by huntti

I am new to this blog. I am one of those rare people that only have lesions in spine and have doubled in 9 months. My physician is surprised I am walking. I am increasingly numb in BLE but the only thing that helps my relapse is plasma exchange. I go through OMRF in case there is a trial for a drug that could help, but they do not have privleges anywhere to do this treatment. anyone else have only spinal lesions ?

What is BLE? - all I could find was Brotherhood of Locomotion Engineers and I !doubt that's it. Turn's out you can't Google everything.