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hello..i am 24 and 2 months ago recieved the daignosis of clinically isolated syndrome..i woke up one day to find i could not see out of my left eye..later i found out its optic neuritis. i had an mri which showed 3 brain lesions.

my neurologist is prescribing copaxone which i am still waiting to hear back from NORD to see if i qualify for coverage. I am nervous about the injection site reactions of copaxone. does anyone here currently take copaxone and if so, what are your experiences with it?

Also, i am very interested in learning about anyones experiences with LDN and ms & if it is risky to skip the copaxone and take LDN instead...

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9 Comments Post a Comment
559187 tn?1330786456
Welcome to our community.  We are happy that you found an joined us.

It sounds like you have learned a lot about MS over the past 2 months.  You have a good neruo, someone who sees that CIS - a possible precurser to MS - is proactive enough to know that it should be treated with a DMD.  Don't let this doctor get away.

You asked about taking LDN instead of copaxone.  We have a many discussions on the forum about LDN and if you put LDN in the search box above, you will be able to pull up these discussion.

I can only talk about copaxone since that is the treatment I chose.  I have been on it over a year now and although you get site reaction, they mostly happen in the beginning of the treatment and get better over time, or they happen from time-to-time for no apparent reason.  I think in my case that they occur if I am not watching carefully whene I stick the needle.  

Copaxone never caused me any other problem like rashes or flu-like symptoms.  Also, when I had a relapse recently, they did not see any new lesions and that showed us that it was working.  

Others will chime in on the LDN hopefully.  Today might be quiet because of the holiday, but you will hear from others or sure.  

Again welcome and if you have a chance, tell us more about yourself and how you are dealing with the new diagnsois.  There are several others here who are new to the diagnosis and we all learn from each other's experiences.

Take care.

Julie (Sarahsmom)

667078 tn?1316004535
Just understand LDN is not a disease modifying drug. It is great for symptoms and for those who absolutely cannot afford a disease modifying drug to stop or slow the progression of MS. Many MS Specialist will not prescribe it because it is anecdotal medicine it has not passed official drug studies. None of my doctors would.

911669 tn?1294102788
Hi and welcome!

You are so young, I hate to hear you are having these symptoms.  It does sound like you have a great doctor.

I just wanted to say hello and please stick around on the forum.  There are so many great friends here to help you...

1140169 tn?1370188676
Hello MissB and welcome.

I can't answer your questions, but others in here surely can (like the couple members above)

Glad to have you aboard.

1318483 tn?1318350782

Hello and welcome to our little corner on the net!  I can't give any thoughts or experiences with Copaxone or LDN (don't even know what this is) as I am still awaiting my diagnosis.  

I just wanted to say hi and to point you towards our Health Pages, link in the top right hand corner.  There is a whole lot of information there that may be useful to you.

The forum may be a little slow due to the holidays, but we do have several people on here with ON and also those on Copaxone (like Julie).

I also have to agree with the others about holding onto that neuro of yours if at all possible!  Unfortunately, there are many neuros out there who are not proactive as yours seems to be.  Hold on to him!  ;0)

Again, welcome to the forum...

Avatar m tn
Hello and welcome.

I am on Copaxone but have only been for about three weeks.  I too was worried about the injection site reactionn as well as other side effects. Thus far I have had no problems at all and hope it stays that way.  The only thing I have experienced is a quite intense stinging sensation after injection that lasts for about 1/2 hour, but I;m told this dissipates with time.

My understanding about DMD's is that the earlier you begin, the better.  It's obviously not good that you have been diagnosed, but it is good that you have been diagnosed eaarly.  As far as risk is concerned, I would definately opt for beginning tx as soon as I could.  My experience is that I had to wait 30 years for a dx (long story) and I believe that if it had been dx'd earlier, I would not have progressed to where I am now.

Sounds like you have done your "homework."  Being as proactive as possible is one of the best things you can do to stay well.  Hope you stickj around.  Plenty of good information and people.  And although it obviously does not equal support of face-face interaction, you can get a great deal of support from a form such as this.  The people here are very caring and compassionate.

1253197 tn?1331212710

Just to say welcome and loved your photo. Sorry to hear about your symptoms and having to deal with this in your twenties is no fun. However, you sound very well informed and positive so keep that attitude and you will be helping yourself. I am not on DMD's (yet) but am about to start an oral drug trial in next 2 weeks and I was dx'd with RRMS in March 2010.

Let us know how you get on and feel free to ask anything that is on your mind (and I mean anything...everyone is very open minded and here to help).

Cheers for now

1312898 tn?1314571733
Hi missbriget,

Welcome to the MS community.  
1368935 tn?1278226489
Thanks everyone for your responses :)
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