ppms and treatment

[kov]

My neuro left.  I am now seeing a new one how is a DO, not an MD.  He seems okay, but he wants me to try Copaxone for a year.  I need to know if anyone else has done this.  What are the results?

[metalbender]

Forgive my ignorance of abbreviations....What is a DO?....As for DMD used for progressive ms, my neurologist told me I have a high probability of being at a progressive state, but doesn't know because of no medical history...But because there is also a high probability of being RRMS as well, he doesn't want to chance it and prescribed avonex...He feels this is better than waiting for something to happen...Also my doctor told me that avonex is showing success on patients with secondary progressive type of ms...This was not in the U.S. but in europe...Has anyone else heard about that study?

Michael

[Lulu54]

Kov,
When I hit your last paragraph I wanted to jump for joy.  I was reading along and all I could think was you needed to get into one of the trials for treating PPMS.  Unfortunately right now there is no approved treatment and the best shot you might have is doing a trial.

Thanks for the update - stay in touch, ok?
Lulu

[kov]

Thanks everyone for your responses.  My week got so busy I did not have time to get back on.  I did read the discussion before I went to the neuro.  Okay, my dx is ppms.  the new doc says that it definitely is ppms.  He wanted all of the blood work and MRI's from NIH.  I got it all for him and he says it is ppms.  So then we talked about meds.  We decided to hold off until I have another MRI of my C/T spine.  The one from NIH was not very clear.  He thinks that there may be a lesion that the radiologist missed. He did the usual track his finger with my eyes.  I had an eye jump and saw double on the left side.  It was new, but he said he wants to keep an eye on it.

After I get the MRI I'm supposed to email him and we will go from there.  I like him a lot. He really listens.  My last issue is that my right ankle kind of rolls when I walk. He thinks that this is from my L spine...a pinched nerve. My back doesn't hurt.  I think he said this isn't ms. I guess he will follow up on that.

I am in line for a clinical trial at NIH if more lesions appear.  It is a drug for ppms.  If I take any DMD, I'm automatically out.  Let's see what happens.

[cainer]

hi  well ppms im not sure what would be best- i had gotten worse and -was on copaxone- no problem  but was getting worse-  im on gilenya now-  so far  so good- its a pill- well  i hope things work out for you!!  everyone is different, so but id sure try something!!

[twopack]

I'd be doing a little happy dance about finding an osteopathic neuro.  My PCP group are all DO docs.  I like their more holistic approach.  Generally though, you might not notice any difference between a DO and MD unless you check out their credentials on the walls.

I looked back at your history here.  It seems you've had the classic hard time getting doctors to agree among themselves or pinpoint your diagnosis.  My guess is that this doc wants to give the DMD a try to cover the possibility you have Relapsing Remitting MS.  Several people here are begging for this type of opportunity because (basically) any chance is better than none.

I wasn't able to define clear boundaries for the progression of my symptoms when I was first diagnosed with MS.  I had no intention of using a DMD because I wasn't convinced it would work.  Besides, they showed me lesions on an MRI from 19 years earlier so I figured this was now Secondary Progressive MS anyway.  No use for a DMD there, right?

Fast forward...... I ended up giving Copaxone a try because I can never say something doesn't work for me unless I've tried it.  By the end of the first year of daily injections I was feeling better than I had in many years.  I did NOT return to anything close to a pre-MS condition.  It was more like a merging of a 'best-I-can-expect' place and an 'I-can-manage-this' place.

I am presently at the tail end of the most specific exacerbation I've ever had.  Still, to me it has been a worthwhile experiment and I plan to continue using it as long as the insurance company and I can afford it.

That's my experience.  I hope all our stories together will help you decide what's best for you.

Mary

[RazCarver]

I thought with ppms the dmd's didn' help.? Maybe the dr wants you to try it just to see if iy would help.

My pcp is a DO. They have 2 more years of schooling and learn other ways of treatment other then just meds. o lime her a lot but think it is more that she keeps an open mind and will admit when sje really isnt sure.

[opie74]

i just wanted to let you know that the best primary care doc that I ever had was a DO.  They have all the training that an MD has, but they also have other classes.  

[Lulu54]

and you didn't say - are you dx'd with PPMS?

[Lulu54]

Sumana has asked the good questions here - I am on copaxone and have been since October 2008.  I'm still happy with it and even more so my msologist thinks it is doing the job for me.

Each one of the dmd's seems to work just slightly different and you want to find the one that works best for you and also fits your lifestyle best.

lulu

[Sumanadevii]

Kov, from my understanding there are times when a DO is more in tune to the workings of our bodies than an MD.  I don't know if your old neuro had you on a DMD or not.  Is the DO switching the DMD or did your neuro not have you on one?  There are many posters here that use Copaxone and have success stories with it.  I hope your old neuro had you on a DMD.  It is what protects us from more lesions forming...Maybe the DO felt your old DMD was not doing the job????

Keep us posted.  I would like to know how things work for you.