That's what I thought, Sally, thanks. That said, I DO hate when doctors say PPMS so definitively in these instances, without explaining their thought process behind prescribing a DMD, that it might be SPMS.

Not to confuse the issue any further but I remember someone on another board who thought she had SMPS but had a exacerbation after many years so her dx was reversed back to RRMS.

Do you see a Dr in Minneapolis or in Red Wing?? I am looking for a second opinion and would like to find a Dr. that has been recommended by an actual patient.

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.

Yeah, it happens . . . and sometimes they are wrong too.

This just doesn't seem to add up to PPMS though, does it?

His "gut feeling" is PPMS . . . based on what criteria? Amy has lots of "enhancing brain lesions", and mentioned nothing about spinal lesions. She has not progressed significantly in 3 yrs . . . and he wants to start her on Copaxone.

Did he do a LP, and how many O-bands were there?

Have you had relapses and remissions (worse, then better periods)? Are you accumulating obvious disability between progression?

Why couldn't this just as easily be "benign" MS . . . at least based on her MS-experience to date?

I just don't see where he is getting his "gut feeling" from . . . but it doesn't sound like he is communicating things to Amy very well either though. That doesn't mean to say that I think he is necessarily wrong . . . I just don't get yet what he is basing his assessment on.

Cherie

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.

Cherie,

I had an LP in January and I am trying to look through my test results regarding the O-bands. I found the following information: Oligoclonal Bands # (abnormal) Present
I have so much "medical lingo" information in my report, is there another term I can look at to find the # of O-bands?

I have not recieved the records from my last set of MRI's yet, so I don't have anything to refer to other than the ones from Dec 08 and July 06. When we were talking with the Dr. about the latest MRI, he said that they also found several lesions in the brain stem and the thoracic and cervical spine. I did not get the feeling that there were a lot.


I am so glad I posted this thread....I am feeling so much better knowing that others feel that the Dr. having such a "hunch" of PPMS so early in my diagnosis may not be the actual case, and that ppms tends not to be diagnosed so quickly. I am feeling much more positive, really. Thank you!

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)..

Yes, O-bands are Oligoclonal bands (I can never remember how to spell it ).

Well, most of us are apparently expected to have O-bands, but sometimes they look at the number of them (2+) to see how much activity there is. The number of O-bands can offer a "hint" as to the disease process going on ... but it's just a hint.

People with PPMS tend to have more spinal lesion disruption, and less inflammatory brain activity . . . at least compared to early RRMS. You seem to have both going on, but he seems to be focusing on the spinal lesions with your dx.

The reason he is focusing there, is because "MRI-noticable" spinal lesions can potentially cause us additional difficulty. (I am one with mostly spinal (big) lesions, so I know how they can be a challenge). Most of us with MS eventually have spinal lesions though (about 75% of us) . . . but they aren't always big or noticable by MRI. When they are noticable on a MRI though, there is probably more chance of having symptoms from them.

Amy, I had one very big spinal lesion for the longest time. If it had been very active, or if the relapses they caused hadn't healed as well as well they did, they probably would have called me PPMS too. Very active spinal lesions just aren't THAT common with MS, so when they see them, they sometimes think the worst.

I am 18 yrs into this and still walking and doing relatively well. I have a gut feeling you will be too.

Cherie