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newly MS diganosed
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newly MS diganosed

Hello,

I read your posts and I feel comfortable to share my question. After an onset of ON (which my neuro-ophthalmologist suggested I should leave untreated) I was just diagnosed with MS. My MRI and my LP confirmed the diagnose but my neurologist told me that it's a very early stage and I should decide whether to go on treatment or just wait?!?. She also gave me a list of medications to choose from?!? I am so confused and I need your advice. I scheduled for a second opinion, I stated taking supplements (D-3, B-12, fatty acids, magnesium, ALA) what else should I do to relieve the panic? I feel so scared. Thank you for your support
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572651_tn?1333939396
Hi and so glad you decided to join us - there is great comfort in knowing you are not the only one facing these questions and challenges.
You asked for interpretation of what those things mean - so here's my best shot-

Optic neuritis will resolve on its own to pretty much the same point that it will reach if you take mega-steroids.  The steroids help to speed the process.

The MRI report is saying they found areas of demyelination (lesions) in areas that are typical for MS, particularly the periventricular ones.  

CSF bans >5 means there were more than 5 obands that were unique to your spinal fluid compared to your blood serum. This is another marker that the myelin destruction has been going on - once tose oband markers are in your CSF, they stay there and don't go away.  They don't cause harm - they are just there.

I hope that helps.  Please be sure to share with your doctor the variety of supplements you are taking - it is important they knowevery thing.  You want to be sure that you aren't taking anything  in too large of doses aor would conflict with any of your other meds.

See you around, I hope!  Laura
28 Comments Post a Comment
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Avatar_f_tn
What other symptoms did you have and what did your MRI show?
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Avatar_f_tn
My opinion is that you should go on one of the MS medications as soon as you can. Their whole purpose is to prevent, as far as is now possible, the disease from advancing. So I can't see a reason to wait.

Yes, there are trade-offs in everything, and the potential for side effects, but thus far no effects are life-threatening. Many people have none at all, and many others have seen them diminish over time.

You're right to get a second opinion. That never hurts, and could relieve your mind. Above all, don't panic. Most of us are living full and rewarding lives, and expect to do so for a normal lifetime. Some adjustments, yes, and some pitfalls and bad times, but on the whole it could be much worse.

Welcome to the forum. Please read our Health Pages, and feel free to ask and questions that occur to you, on medications or anything else. Don't feel alone. This is a great group for support.

ess

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Avatar_f_tn
Thank you, Ess. I have never joined a forum group before but you can't imagine how much better your response made me feel now. It does mean that I am not alone. Thank you!!!
I have an appointment next week with a MS specialist but while waiting for all the results I haven't been treated with anything, so I decided to start taking supplements like D-3, B-12, ALA, magnesium and Omega-3. What do you think of supplements? If I start medications should I take them without a break? I am not sure if my insurance will cove them?....There is so much I don't know and I really appreciate your advice.
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382218_tn?1341185087
Very sorry to hear of your dx.  I absolutely understand that panic.  I have been there.  Had a shortlived meltdown or two along the way.  What I wish I'd known five or so years ago when I got my news, is everything Ess talks about in her above post.  Our worst fears are almost never realized.  The second opinion is a great idea.  I agree with Ess about treatment.  Explore all the options with your docs, ask lots of questions, learn as much as you can about this disease, and stay connected with this group.  These things will go a long way in helping to alleviate the fear you are currently dealing with.
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Avatar_f_tn
Optic neuritis.
MRI showed "multifocal T2/ flair hyper intensities throughout the sub cortical and periventricular white matter - suggestive of demyelinating process.

CFS >5 well defined gamma restriction bands not present in the serum sample.

I don't really understand all these above but any inetrpretation will be of help. Thank you
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Avatar_f_tn
You are in my thoughts. You will find the strength within you to cope with this and you are not alone :)
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Avatar_f_tn
You're more than welcome. I too had never joined a forum before. When I got here in '07, I joined for info, which was great (and accurate), and stayed for that plus support and friendship. Also some fun. See our birthday thread for our member Alex, below.

Supplements are fine, as far as they go. Many MSers are low on D3, and MS neuros urge us to get much higher than what is generally listed as normal, whatever that is :-)

As to the MS meds, as soon as possible doesn't mean tomorrow. Take some time to read up on them, and remember that if one doesn't work out there are others. Nothing is written in stone. Most US prescription insurers cover these, as otherwise no one could afford them. $$$$   Of course, co-pays vary, though many drug manufacturers offer special deals. There are a lot of bureaucratic hoops to jump through, no matter what.

Don't worry about that part now. Take time to settle yourself, starting now. A warm (not hot) bath, a glass of wine, a good book, whatever floats your boat.

Again, welcome.

ess
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2015036_tn?1333001388
Since you are clinically definite, I'd recommend getting on a therapy soon.  The interferons (Avonex, Rebif, and Betaseron) all work pretty much the same way.  Copaxone is a copolymer, that acts as a myelin decoy.  Did your neurologist give you any choices other than these four?
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572651_tn?1333939396
Hi and so glad you decided to join us - there is great comfort in knowing you are not the only one facing these questions and challenges.
You asked for interpretation of what those things mean - so here's my best shot-

Optic neuritis will resolve on its own to pretty much the same point that it will reach if you take mega-steroids.  The steroids help to speed the process.

The MRI report is saying they found areas of demyelination (lesions) in areas that are typical for MS, particularly the periventricular ones.  

CSF bans >5 means there were more than 5 obands that were unique to your spinal fluid compared to your blood serum. This is another marker that the myelin destruction has been going on - once tose oband markers are in your CSF, they stay there and don't go away.  They don't cause harm - they are just there.

I hope that helps.  Please be sure to share with your doctor the variety of supplements you are taking - it is important they knowevery thing.  You want to be sure that you aren't taking anything  in too large of doses aor would conflict with any of your other meds.

See you around, I hope!  Laura
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Avatar_f_tn
Thank you all. Your answers help me a lot to overcome the initial shock. The ideas you gave me about the possible medications:
"(Avonex, Rebif, and Betaseron) all work pretty much the same way.  Copaxone is a copolymer, that acts as a myelin decoy"  give me some insights into the overwhelming information.
What are the possible side effects? How long should I take them? Do I take a break form medications?
I was able to make an appointment with a MS specialist next week and would appreciate any advice regarding  questions I should ask.

Could you recommend a place I should visit in the area of Fairfax, Northern Virginia?

Any advice is highly appreciated. THANK YOU
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Avatar_f_tn
Hi there, I am newly diagnosed as well.
First symptom that prompted me to attend a clinic was October 2012 (numbness on one side), MRI in November showing multiple lesions.
2nd MRI in March 2013- 1 more lesion- confirmed RRMS- started Copaxone that week.
I too have been taking all sorts of vitamins and supplements, and still another "silent" lesion formed, time to take action.

I choose Copaxone for it's lack of side effects, so far 2 weeks in, and no issues. Injections sting YES, but hopefully in a year from now it will slow down my progression. I get a raised bump where I inject but it's so far been gone in a day if that. I feel a little lump when I press on skin near injection site, but it is gone in 4 days as well (not visible), and I massage it out after 24 hours with lotion :)
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Avatar_f_tn
How often do you administer the Copaxone injection?
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667078_tn?1316004535
Welcome sorry for the diagnosis. It is normal to be scared. I was terrified. I went through a whole roller coaster of emotions the first year. I was relieved to be diagnosed, scared, angry, sad, etc.

I wanted to be in the best health I could be in so I set up regular exercise and I cleaned up my diet. I started slowly changing how I ate. I wanted to control something in life. I tried walking, yoga, swimming, and then horseback riding. I like the horseback riding the best. I made new friends at the farm and I really look forward to going out there.

I rewarded myself after diagnosis with a balloon ride and camping in the Shennadoah. Next I am going ziplining.

Copaxone is once a day. With MS it important to be on something to slow progression.

Ask away on the questions that is what we are here for.

Alex
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Avatar_f_tn
Thank you, Alex!

Should I assume that most people are on Copaxone? I guess all of the meds have side effects. Have you started it right after being diagnosed? How have you felt so far?
I am here on a visa and I really don't know how things will work out. So many things to consider at this moment....
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Avatar_f_tn
Thank you Laura for taking the time to give the extensive explanations. It clarifies the mystery behind the terms.
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Avatar_f_tn
Everyday, but hopefully so worth it when I get my next MRI :)
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Avatar_m_tn
Now that BK-12 has been approved by the FDA, you have an oral medication which has been shown to be more efficacious than Copaxone, the most commonly prescribed, daily, subcutaneously administered injectable.  I know, I am a doc with MS and until BK-12, I was a pin cushion.  Now that you have something far better and oral, I wouldn't wait a minute.  You are slowing down a non-stop process.  You are far better off slowing it down before it makes itself known to you.

When I was dxd, there were only injectable and I therefore procrastinated for 5 years.  That was a HUGE mistake and I think about it every 4-6 hours, EVERY DAY.  See a Neurologist, NOT an Internist, Generalist, etc. and make sure he/she has a long track record.
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Avatar_f_tn
Thank you, Matt,
BK-12 sounds like a miracle.
Is it difficult to start on BK-12 or it depends on the insurance. My insurance only covers generic medications. Is there a program for supporting people like me, who can't afford the expensive drugs?
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572651_tn?1333939396
Just to clear it up - the newest MS disease modifying drug is Tecfidera, formerly known as BG-12.  There is a website with very limited information on this for now - there is a six month window after approval that the pharmaceutical companies have to wait for agressive marketing  before they can get into the whole show for us.  Right now, though, we can read the prescribing information and find the results of their studies on all sorts of online places.

It appears Tecfidera has the best efficacy rate of the oral meds and is only surpassed by Tysabri in decreasing the rate of relapse.  There is a patient assistance program on their website - tecfidera.com - that gives you details.  

Keep in mind that the drug companies - all of them for all types of drugs and not just MS ones - are not allowed to offer their pateint co-pay program to anyone who is covered by government insurance .  Govt insurance is medicaid, medicare and Tricare (for military).  That said, if you are on govt insurance and the copay is prohibitive, you need to state your case to their workers and they can connect you with other charitable funded organizations (usually funded by the very same pharma company) that often will be able to help.

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572651_tn?1333939396
oops I hit return before I had closed - if you need any extra information on how to ask for Tecfidera, please let me know.  ~Laura
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Avatar_f_tn
Hi there,  can I ask you a ??  We're you diagnosed based on just the two MRI's? I see you are newly diagnosed. I had 2also, showed more lesions, but my ST came back negative. Some of my symptoms are brain fog, forgetfulness, tingling and numbness hands & 1 foot. Tremor (head) and right arm, can't sleep usually 2-3 nights/wk. diagnosed with fybro, psoriatic arthritis, ibs. I also get extremely exhausted after doing anything. If I overdo it, I'm down for a day or two. I've lost my balance on occasion, fell once, a few yrs back had an episode where I saw a weird cloudy thing in the middle of my vision. It went away by the next day, so never really thought of it again.  I am anxious, and sometimes feel like someone is squeezing the life out of me or sitting on my chest (NOYONE is)  I am feeling panicky as I haven't been diagnosed by the neuro. However he agrees w the radiologist that I have 2 MRIs that show MS lesions and is waiting for one more clinical findings. I am wondering seeing as I have so many symptoms (that have seemed to continue to progress) as I silly to wait another yr for a diagnosis. I see on here that many say its good to get on meds right away to help stop the progression.
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488198_tn?1390241348
I also was scared upon diagnosis, so I understand how you feel. Now nine years later, the progression I feared has not come to pass. At least some of the credit goes to my DMD (disease-modifying drug), and I would encourage you to start one as well. Copaxone has been the most commonly prescribed brand, but the four interferon brands together have as many or maybe slightly more patients.

Whether Copaxone, Tecfidera, or anything else, they all have potential side effects. They are almost always less serious than the effects of disease progression. We cannot predict with certainty that one drug will work better than another for any particular individual, and the intensity of side effects can vary as well. I suggest that you choose the treatment that you can most easily comply with the dosing routine. After you've given it a chance, you can always change if it's not working out.

An objective summary of the DMDs is at the link below.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
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198419_tn?1360245956
Greetings Hsisi, Cookie, and Matt! Three new members on one post, and a potentially confusing discussion on meds, especially for the newly diagnosed.

So much good information has been given, corrected, etc., I only have an add I feel is important to post, and that is, while the new orals will be more comfortable to take - please don't take away from this particular discussion that ease equates to the miracle drug for all MS.

It's well known (and Matt, I'm sure you'll agree as you mention you are a doctor) that not all meds work for everyone. The interferons have their place, as do the peptides (copax), and now the new orals which have shown to work by different mechanisms.  If an existing disease modifier is working to halt progression and relapse for an MSer then a switch may not be considered by either doc or patient.

It's important to know that treatment results vary from person to person as does MS.  Starting something is very important - being in good care by a doctor who knows if a switch needs to be made -- equally important.

I wish you well with your decisions as you and your doctor explore your beginnings with treatment.

Thank you for joining us, and trusting us to thoughts.
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Avatar_f_tn
Thank you all for the support! Just for a couple of days I feel that I am not that lost in panic anymore. LIFE GOES ON!
Now my situation is a bit complicated, given the fact that I am here on a spouse visa, based on my husband's work visa. This visa does not allow me to work, so I am volunteering at a school that sponsored me to take a second master's degree.

I have an individual insurance. Still not sure how to approach the insurance company about coverage and not sure either if I could qualify for any program. Medications seem to be a must but it looks like it is not just a matter of my choice.  
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Avatar_f_tn
I am so brand new at this all :)
I had 1 MRI (prompted by ALOT of numbness that lasted 5 weeks plus- some leftover still) discovery was 5-10 lesions in that one.. Then 2nd MRI and 1 more lesion has formed... Diagnosed by MS specialist and Neurology... Started Copaxone right away, now just into week #3.

Hope this helps :)
Val
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Avatar_f_tn
We don't have the option of orals here in Canada, as far as I am aware.. YET :)
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Avatar_f_tn
Doesn't this oral drug have terrible side effects. I was told to stay away from oral drugs.
Thank you
Sheila Norris
***@****
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Avatar_f_tn
My neurologist prescribed me Rebif. I would appreciate any advice on that medication. Thank you!
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