Primary Progressive MS and Copaxone???
 

I am still trying to learn about MS, but there is so much information that it is quite overwhelming. My new Dr. feels strongly that I have Primary Progressive MS and suggests I try Copaxone. From what I have read, it sounds like Copaxone is more helpful for Relapsing Remitting MS...

I'd love to hear from others with Primary Progressive and what have your experiences been. I live near Minneapolis and am looking for a Dr. that has some personality, because so far I have been seen by two neurologists and have not felt so comfortable with either one.

Hi Amy..
I live near Minneapolis, too (Red Wing)..Which neuro have you seen? My first dx was PPMS, but was put on Rebif, than Copaxone. I'm glad, because after several years I had my first flare a couple months ago (first one I'm sure of, anyway), and this happened a year after I stopped Copaxone. MS is so unpredictable, my neuro really helped me out by not listing it as progressive in my records as insurance won't pay for DMD's for that.

My first diagnosis was RR. Both my doctor and I thought PP from my re-telling of events, but he knew saying PP meant Insurance company wouldn't let me try, and everyone deserves a chance. Did rebif foer two yearsa with no change, he said I could stop. He left my clinic, next two neuros agreed PP. I wish PP was easier for them to research, it gets few clinical trials.

My ENT says her hubby has PPMS, and is on copaxone. Said he has had positive results with it. I was surprised to hear that. She said they have been incorporating it more and more instead of offering no hope. I dont have many stats, I just know someone who is on it.

I have seen two Dr.s from the Minneapolis Clinic of Neurology. Dr. Murphy at the Coon Rapids Clinic. And I have seen Dr. Gary Birnbaum at the Golden Valley Clinic.

I want to find a Dr. that will listen to me, explain things to me and basically have a "good" bedside manner. I don't think that I am asking too much..am I?
Do you have any Dr suggestions for me?

Why in the world would insurance not help for PPMS, but they will for RRMS? That is insane!

DMDs for PPMS?
 

I'm confused by this. It is my understanding that DMDs are not used to treat PPMS. Is it possible that in the instances cited (Rebif and Copaxone), they were prescribed in case it was actually SPMS? (I've read about how SPMS is sometimes mis-dxed as PPMS due to patients not being dxed until they've graduated to that stage, so although progress seems more rapid from the start, it was really that their RRMS did not present enough problems for them to seek a dx.) :confused:

How are you doing with PPMS? I have not had anything disabling yet, just numbness, tremors, muscle spasms and fatigue. I was pretty upset when I had my MRI in February09 compared to the one I had in December08 and they found that I have at least a 1/2 dozen more active lesions in the brain. When they compared my July 2006 (I had nine lesions at that time) to the December 2008, they found that I had at least two dozen more lesions!

I realize that the number of lesions is not as important as the "location" of the lesions, but should I worry about how fast the lesions are multiplying? They also found that I have several in the thoracic and cervical spine too. I'm just trying to absorb all of this, but it can be real difficult some days, like I'm sure you all know.

I'm confused by all of this too! I had my first symptoms come on suddenly in 2006, and even though there were lesions on the brain at that time, I was told not to worry and that if I have more symptoms that I should see a rhuematologist..but was never told why I should see one. I believe that I have been having symptoms well before 2006 and it was only in January 2009 that I was diagnosed with MS, and referred then to a specialist. When I saw the specialist, we met with him for about 20 mins and he said his gut feelining was PPMS and ordered another full set of MRIs. Now he wants to put me on Copaxone, but I have not had any conversations with him about this, only his nurse. I just don't know that I am at the right clinic, even though he very well known in the area, but I am frustrated and confused. i need to find a DR. that knows MS and who will give me the time and care I need to get my questions answered and help me make a good decision on what treatment course is best for me. I spoke to my pharmacy and they told me that Copaxone runs @ $2551/month for a 30 day kit. I cannot afford that!!!

I think Neuros can't really be sure if it's PPMS, so some recommend a DMD. Copaxone could be helpful for you and I hope it is....and I hope you don't have PPMS..:hug:

Would you have to pay for all of the Copaxone? Do you not have any insurance? It could be, that you may qualify for financial help in paying for it.

:hug:

I do have insurance, but it is not the greatest but ok. I actually think that I am within $50 of my deductible this year already anyway, but I didn't want to contact the insurance company, because I don't want them to "label" me as an MS patient yet....maybe I am hoping that this is all a big joke?! :rolleyes: