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Looking into treatment now i've been diagnosed..
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Looking into treatment now i've been diagnosed..

Going through the diagnosis process.. MRI showed multiple lesions in brain and one in spine. LP results were high in 4 areas: CSF IGG/ALB Ratio. CSF IGG Index. IGG Synthesis Rate CSF. and Oligoclonal Bands, CSF.
With these results my doctor has said it is RMMS. My sister worries this is not enough to give a positive diagnosis. I'm comfortable with my doctor and trust he is correct. Anyone think I need more testing, second opinion? Just based on your experience with getting diagnosed.

Doctor sent me with lots of info on MS and treatment options. I will be doing my research but was curious other peoples thoughts/experiences with the options I was given. Copaxone, Rebif and Avonex.

8 Comments Post a Comment
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1831849_tn?1383231992
Hi KS - Sorry you seem to be on your way to membership in our little club, but glad you found us :-)

The MRI and LP results are generally used to confirm a clinical diagnosis. I am assuming you had symptoms that lead to all the testing. I wasn't clear the o-bands part of your results. Did you have o-bands that were unique to your CSF, meaning o-bands that showed up in your CSF but not in the blood sample drawn at the same time?

If so...if it walks like a duck and quacks like a duck...

It's great that you have a doc that you like. He will not be insulted if you get a second opinion. I think it is a good idea. Before you start on a DMD (Disease Modifying Drug) treatment it makes sense to know that your treating the right thing :-)

Keep us posted.

Kyle
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572651_tn?1333939396
welcome to our little corner of the internet.  I'll second Kyle's welcome that I'm sorry you have been DX'd with MS but glad you found us.

It sounds like you doctor is positive on your diagnosis and you don't have questions, either.  However, a good doctor will never object to a second opinion.  you can take all of your test results (so you don't have to repeat anything) and have another neurologist take a look at them.  

I have to say I didn't get a second opinion and didn't feel like one was needed.  I trust the medical care I am getting, and my MRI/LP and neuro exam all fit the classic MS pattern.  It really is an individual choice ....

One of my favorite sites to review the drug choices initially is a site in UK, that steps you through some of the choices you have... and right now I can't find it....

The drugs you have been offered all are proven to work for people with RRMS to delay the rate of relapses --  what one you choose depends on personal choices.

I'll look for that site and add it -
welcome again, L

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4478309_tn?1356065267
Hey Ken. Yes I was having symptoms of numbness and tingling/electricity for about 3 months before I went to the doctor.
The O-bands says: "five oligoclonal bands were observed in the CSF, which were not detected in the serum sample."  goes on to say four or more is consistent with MS.
Thanks for the help. Lots of great info on here.
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4478309_tn?1356065267
**sorry meant Kyle, not Ken. not sure where that came from.
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488198_tn?1390241348
There are options other than what your doctor suggested, but the three he suggested all have stood the test of time, having been on the market for years. In general, all three have similar efficacy in the general population, but it's difficult to predict which ones will work or not work for a particular individual. If your first choice doesn't work, you can change later.

They all have side effects; it's just a matter of which ones you can tolerate and mitigate. The intensity of side effects varies among individuals. Again, you can change later.

A summary of different treatments is at this link below (and from there you can also find lots of other information for the newly diagnosed).

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

Ask questions anytime!
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1831849_tn?1383231992
" not sure where that came from."

Cog Fog. It's one of the few advantages to life with MS. We can summon it when necessary :-)

As to second opinions, I was sort of qouting the company line. If I had been even remotely comfortable with my first MS doc I probably would not have sought a second opinion. I was not comfortable, in fact he was a nightmare :-) Turns out to have been a good thing. THe second MS doc I found is the most amazing doc of any kind I've ever seen!

You seem to have rung all the bells test & symptom wise speakin'. You sound as though you are very happy with your doc. It's up to you. If you don;t think a second opinion will add any value then don't get one.

Kyle
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4530502_tn?1360544094
@Kagestarr Like everyone else I am sorry you have to go down this road with us but welcome aboard.  I would just like to add one thing on the DMD's PLEASE read carefully the side affects and PLEASE ask us any any other forum you can about other peoples opinions and experiance.  YES it is different for all of us but we can probably give you a good sound off as needed.  I must say I went to several forums and MS support groups to be sure which I chose and I am so glad I did, it really helped me choose what was right for me.  

Good luck!
Val
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1530171_tn?1362547225
Hi Kagestarr.

I'm more like a visitor and observer here.
Once in while I offer my 2 cents worth- of usually alternative knowledge.


In regards to the new MS diagnostic criteria presented by the International Panel on Diagnosis of MS.

Potential Conflicts of Interest:
C.H.P.: consultancy, Actelion, Biogen Idec, Bayer Schering, Teva, Merck-Serono, Novartis, Glaxo SK, UCB, Roche, Antisense Ther; expert testimony, Biogen Idec; grants/grants pending, Biogen Idec, Bayer Schering, Teva, Merck-Serono, Novartis, Glaxo SK, UCB. S.C.R.: travel support, US NMSS, ECTRIMS, Multiple Sclerosis International Federation, MS Ireland; payment for writing or reviewing manuscript, US NMSS, ECTRIMS; consultancy, US NMSS, ECTRIMS, Sanofi-Aventis, Bayer Schering Pharma, BioMarin, EMD Merck Serono, Mt Sinai College of Medicine (New York, NY), European Committee for Treatment and Research in MS, Eisai, INC Research, Eli Lilly Inc, Isis Pharmaceuticals Inc, MediciNova, Cleveland Clinic Foundation, Free University Amsterdam, Genentech/F. Hoffmann-LaRoche, Synthon BV, Antisense Therapeutics Ltd, BaroFold, Protein Design Laboratories; royalties, Demos Medical Publishers (New York, NY). B.B.: travel support, US NMSS, ECTRIMS, MSIF, MS Ireland; consultancy, Biogen Idec, Genzyme; grants/grants pending, Multiple Sclerosis Society of Canada, Canadian Institutes of Health Research; paid educational presentations, honoraria for symposia at the American Academy of Neurology. M.C.: board membership, GENMAB; consultancy, Biogen, Genzyme; grants/grants pending, Bayer Schering, Biogen Elan, Novartis, Merck Serono, Sanofi-Aventis, Teva. J.A.C.: travel expenses, US NMSS; consultancy, Biogen Idec, Lilly, Novartis, Serono, Teva; grants/grants pending, Department of Defense, NIH, US NMSS; speaking fees, Biogen Idec, Novartis, Sanofi-Aventis, Waterfront Media. M.F.: travel expenses, US NMSS, ECTRIMS, MSIF, MS Ireland; board membership, Teva Pharmaceutical Industries Ltd, Genmab A/S; consultancy, Bayer Schering Pharma, Biogen-Dompé AG, Genmab A/S, Merck Serono, Pepgen Corporation, Teva Pharmaceutical Industries Ltd; grants/grants pending, Bayer-Schering, Biogen-Dompé AG, Genmab A/S, Merck Serono, Teva Pharmaceutical Industries Ltd, Fondazione Italiana Sclerosi Multipla, Fondazione Mariani; speaking fees, Bayer Schering Pharma, Biogen-Dompé AG, Genmab A/S, Merck Serono, Teva Pharmaceutical Industries Ltd; travel expenses, Teva, Biogen-Dompé AG, Merck-Serono, Sanofi-Aventis, Genmab, Bayer Schering. K.F.: travel expenses, US NMSS, ECTRIMS, MSIF, MS Ireland; consultancy, Bayer Schering Pharma, Biogen Idec, Merck Serono; grants/grants pending, Bayer Schering Pharma, Biogen Idec, Asahi Kasei Kuraray Medical Co Ltd, Chemo-Sero-Therapeutic Research Institute, Mitsubishi Tanabe Pharma, Teijin Pharma, Theva Pharmaceutical, Eisai Inc, Kowa Pharmaceutical, Ministry of Education, Science, and Technology of Japan, Ministry of Health, Labor, and Welfare of Japan; speaking fees, Bayer Schering Pharma, Biogen Idec, Eisai Inc, Mitsubishi Tanabe Pharma, Astellas Pharma, Takeda Pharmaceutical Company Ltd, Asahi Kasei Kuraray Medical Co; paid manuscript preparation, Cosmic Corporation; royalties, Bunkodo. E.H.: travel expenses, US NMSS, ECTRIMS, MSIF, MS Ireland; consultancy, Biogen Idec, Genzyme, Merck Serono, Novartis, Grifols; grants/grants pending, Biogen Idec; speaking fees, Biogen Idec, Genzyme, Merck Serono, Novartis, Bayer Healthcare, Sanofi-Aventis; paid educational presentations, Novartis. M.H.: consultancy, Biogen Idec; grant/grants pending, Health Research Board Ireland; speaking fees, Biogen Idec. L.K.: travel expenses, US NMSS; board membership, Editorial Board of Multiple Sclerosis; grants/grants pending, National Research Foundation Switzerland, Rubatto Foundation, Swiss MS society, European Union, Roche Foundation, Novartis Foundation; speaking fees, various companies involved in development of MS therapeutics; paid educational presentations, Neurostatus System for Standardized Neurological Assessment. F.D.L.: travel support, US NMSS; consultancy, Novartis, Bayer, Biogen Idec, EMD Serono, Genentech, Teva Neuroscience, Genmab, Medicinova, Actelion, Allozyne, Sanofi-Aventis, Acorda, Questcor, Avanir, Roche, Celgene, Abbott, Pfizer, Morphosys; grants/grants pending, NIH, NMSS, Acorda, Biogen Idec, Teva, Novartis, Sanofi-Aventis; speaking fees, Genzyme, Teva, EMD Serono; paid educational presentations, various continuing medical education services; stock/stock options, cognition pharmaceuticals. X.M.: travel expenses, US NMSS; consultancy, Bayer Schering Pharma, Biogen Idec, EMD Merck Serono, Genentech, Genzyme, Novartis, Sanofi-Aventis, Teva Pharmaceuticals, Almirall; grants/grants pending, Bayer Schering Pharma, Biogen Idec, EMD Merck Serono, Genentech, Genzyme, Novartis, Sanofi-Aventis, Teva Pharmaceuticals, Almirall; speaking fees, Bayer Schering Pharma, Biogen Idec, EMD Merck Serono, Genentech, Genzyme, Novartis, Sanofi-Aventis, Teva Pharmaceuticals, Almirall. M.S.-W.: travel support, US NMSS, ECTRIMS, MSIF, MS Ireland; fees for review activities, Genentech, Merck Serono, Roche; board membership, Board of Directors of Active Biotech, Sweden; consultancy, Elan, Merck Serono; speaking fees, Bayer Health Care, Merck Serono, Serono Symposia International Foundation, Sanofi-Aventis, Swedish Bank SEB. A.J.T.: travel support, US NMSS, ECTRIMS, MSIF, MS Ireland; board membership, National Hospital Development Foundation, Patrick Berthoud Charitable Trust; consultancy, Weleda AG/Society for Clinical Research, Medical Research Council, MS Society of Great Britain, Merck Serono, Biogen Idec, DIGNA Biotech, Novartis, Eisai London Research Laboratories, Teva Pharmaceuticals; grants/grants pending, National Institute for Health Research, MS Society of Great Britain; speaking fees, Serono Symposia, Sanofi-Aventis; travel expenses, MS International Federation, US NMSS, Biogen Idec; honoraria, Editor-in-Chief of Multiple Sclerosis. E.W.: consultancy, Roche, Actelion; grants/grants pending, US NMSS, NIH; speaking fees, Teva; received free drug for a trial given by Sanofi-Aventis and Biogen Idec. B.W.: travel support, US NMSS; European Committee for Treatment of MS; MS International Foundation; MS Ireland; consultancy, Novartis, Biogen Idec; employment, Mayo Clinic; royalties, RSR Ltd. J.S.W.: travel support, US NMSS, ECTRIMS, MSIF, MS Ireland; board membership, Antisense Therapeutics Ltd, BCDecker, Novartis Pharmaceuticals, Sanofi-Aventis, Teva Pharmaceuticals, Eli Lilly, UCB; consultancy, Genentech, Novartis Pharmaceuticals, Sanofi-Aventis, Teva Neuroscience, Teva Pharmaceuticals, Acorda, Acetilon, Bayer HealthCare, Facet Biotech, Peptimmune; grants/grants pending, NIH, Sanofi-Aventis, Clayton Foundation for Research, US NMSS; honoraria for lectures, Consortium MS Centers, Sanofi-Aventis New Zealand, Sterling Meeting Services, USF Health Professionals, Texas Neurological Society, Teva Pharmaceuticals, Lone Star Chapter NMSS, ICHE, Pfizer EMD Serono, SUNY, Stony Brook Foundation, UTMB, Medscape CME, University of Buffalo, Serono Symposia International Foundation, University of Utah; royalties, Millipore (Chemicon International) Corporation.

Makes you think. Right?
What if established MS dx and treatments have NOTHING to do with the truth.
Ever wonder?  I do - quite often, as a matter of fact.

Cheers!
Niko

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