Amy, are you sure he said "PPMS" and not just "progressive MS"?

The reason I ask is that they don't normally assess PPMS for the first few years; they would normally expect to see more spinal lesion activity and less brain lesion activity in the beginning, remissions do not occur so much, and "enhancing" lesions are far less prevalent in PPMS.

If it was "progressive RRMS" he meant, then your background seems to make more sense to me.

Cherie

It is my understanding that NO ONE is dx'ed as PPMS until after one year.

The reason is to get a medical history. If it is RRMS, it can take that long for a more accurate assessment.

Plus, the nursing consultant at the MS Specialist said that women usually are in their 40's to 50's at onset and most lesions are located on the spine rather than in the brain.

Your doctor is probably practicing good medicine by starting you on a DMD.

Cherie and Aarcyn, I have seen 2 cases of someone being dxed with PPMS right off the bat on another board. I always thought that was strange.

He definately said primary progressive, both my husband and I heard him and asked him what that meant. And because I have not seen this Dr. face to face for more than 30 minutes, and from other suggestions, I am going to look for another opinion. I have too many questions that I don't feel were answered, and not only that, I would have hoped that he would have given information about things I would not have known to ask about, if that makes sense.

I see Dr Gareth Parry at Fairview University Clinic (on the U of M campus)..He's very kind, will answer questions honestly and will tell you if he just doesn't know..He also has the benefit of a great MS Nurse (Denise), who has a great sense of humor and will call you back when you leave a message (I hate when doctor's offices don't call back..It's a deal breaker for me)..

Thank you!! I have actually heard of him, but I was spelling his name as "Perry". I work very close to the U of M campus, so I might need to check him out. I appreciate you sharing his name!

I asked my neuro about this.

He says he will prescribe Copaxone and other DMDs to people with PPMS.

Like previously stated, why give NO hope, you know?

Amy, I am a 63 year old woman with primary progressive MS. About a month ago, my neurologist convinced me to use copaxone. There have not been any obvious reactions to this medication, but no obvious good is being done either. I do everything to keep myself healthy, including exercising. But so far, the copaxone has not stopped me from getting gradually weaker and weaker. For all I can tell, it may have hastened the progression of the disease rather than slowing it. If anything dramatic happens to me one way or the other, I will try to let you know about it.

Hello Amy,
I've been on copaxone for 12 years, I am 65 and live in Corby England. Was diagnosed at age 50 with ppms. It just beats you down. Have just lost ability to walk. My specaist is trying to ween me off it as there is no medical proof it helps? It is a mental help where there is none. Hope this helps. Keep fighting exercise as much as you.can.
BOB