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Old 03-06-2009, 12:45 PM #1
Bearygood Bearygood is offline
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Question 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.)

Last edited by Bearygood; 03-06-2009 at 11:51 PM.
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Old 03-06-2009, 12:55 PM #2
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Quote:
Originally Posted by Bearygood View Post
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.)
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!!!
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DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE




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July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
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10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 03-06-2009, 01:30 PM #3
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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..

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.

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Bearygood (03-06-2009)
Old 03-06-2009, 01:37 PM #4
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Quote:
Originally Posted by SallyC View Post
I think Neuros can't really be sure 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..

Would yu 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.

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?!
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Amy



DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE




.

July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 03-06-2009, 02:02 PM #5
Bearygood Bearygood is offline
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Quote:
Originally Posted by SallyC View Post
I think Neuros can't really be sure if it's PPMS, so some recommend a DMD.
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.
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