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Old 12-14-2009, 12:25 PM   #1
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MS and Copaxone

Diagnosed with MS from MRI and Clinical went on Copaxone 7 months ago but just got a spinal tap and it was negative. My DR. (says that it's remitting but very benign) wants me to stay with Copaxone I am leaning to go off. Is there any problems with being on Copaxone and finding out that you may not have MS??????
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Old 12-14-2009, 01:37 PM   #2
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Re: MS and Copaxone

First of all, you need to understand that many of us have negative Spinal Taps. The LP or spinal tap only measures Obands in the spinal fluid, and those are only indicative of autoimmune diseases. So, depending on your MRI and symtoms, you can definately have a positive MS diagnosis, with a negative Spinal Tap. You might want to read more on the Obands and the McDonald criteria to understand...

To further answer your question, Copaxone wont hurt you. And, if you do have MS, it will probably help you to keep you from developing new lesions and symptoms. You can always go off it for a year and see what happens, but if something does happen, it might be permanent nerve damage- and too late to fix.....or, it could go 'your way" and nothing might happen. Each of us has such a different type of the disease, there is no way to tell.

Wishing you the very best...and stay healthy!
Nikki
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Old 12-14-2009, 01:57 PM   #3
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Re: MS and Copaxone

Thank you for the information on the bands. I had a MRI 20 years ago and they said I had three spots but spinal neg with elevated protein, I've just been on my merry way dealing with fatigue etc. until the past two years I have had tingling in my feet and every so often what feels like pin *****s in various places some left eye issues but neg. eye test (can't think of name) my boss says I have been a bit foggy brain this past two years. Recent MRI show more spots. Must say I have also been under a lot of stress. I am so torn on what to do take a chance I just turned 50. My mom was diagnosed when she turned 53.

 
Old 12-14-2009, 02:10 PM   #4
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Re: MS and Copaxone

Wow, that stinks that your mom was dx at approximately the same age. I was dx at age 39...almost 4 years ago.

The fact that you are having these problems, does sound alot like MS...and if it were me, I would want to be on one of the drugs. Copaxone is a synthetic drug, not like Rebif, Avonex or Betaseron, which are naturally found in the brain....however, it works similarly, to stop progression. I am a huge advocate for stopping progression for myself- Id do anything including bang Rebif into my body, to do so....but for me, it seems to be helping. I still lead a full life, work 50+ hours a week, am in Graduate School- and have a family.

The brain fog and fatigue alone might clear up alittle bit by being on Copaxone, I know being on Rebif, it helped me (even though its not supposed to help symtoms).

Talk to your doctor, maybe get a second opinion with a MS specialist? The simple fact that you have more lesions would scare me into being proactive...you could sit and wait and see what happens, but you already know that its risky.
Hope your mom is handling this okay? How is her health?
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Old 12-14-2009, 03:56 PM   #5
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Re: MS and Copaxone

Thanks for asking about my mom, she lost her sight has some vision periferally and has some mobility issues in her 70's never went on drugs alomost 30 eyars ago not much was happening with availability of drugs. She seems to think that when I was 16 I spent time in the hospital with my jaws locking up muscle issues but they never tested for MS alot of other auto immune disorders. By they way the foggy brain thing started to clear up maybe due to copaxone or just happened every once in a while when I get tired it creeps back up. My boss said he noticed I have been a bit more on top of things.

 
Old 12-14-2009, 04:10 PM   #6
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Re: MS and Copaxone

R- sorry to hear about your mom, but that story isnt unusual. Horrible as it is - NOW really is the time to have MS, not 30 years ago. WIth all the drugs available to us these days, we have a better chance then our parents at living a life without progression then they did....

As far as the Copaxone goes; another thing you should keep in mind. The drug didnt start really getting into your blood stream and start working until month 6. So, if you have only been on it 7 months...then you are just starting to see the benefits of it. Again, not trying to push drugs on you, but if you state that the fogginess started to lift, maybe you want to stay on this another 6 months and see how you feel? Most importantly, the first 6 months are a good time to get a base MRI and then have it rechecked in another 6 months to see if there are any changes. No changes, generally means the drug is working for you...
Youll need to talk this thru with your doctor to truly understand the benefits and pros vs. cons of this one...

But it does seem that you are in denial of having MS. Is that the case or am I reading you wrong? You bring up the fact that the doctor doesnt think its remitting...but there is nothing other then Relapsing/Remitting, Primary Progressive and Secondary Progressive. The diagnosis of MS is made based on radiographic tests (MRIs) and symtoms, along with ruling out everything else. If you have lesions and symtoms, its a good chance that your doctor is saying that you dont have "alot" of them, but you do have them...if you have periods of remission where things seem fine, then its a very good chance its relapsing/remitting..which can stay that way forever. 85% of people are diagnosed with R/R MS. Only 10% of them (in this day and age) progress. So, you might want to talk to your doctor further about what exactly he is telling you, or you might want to take those tests and reports to another Neuro for a second opinion...but right now, if you are starting to feel better and starting to see the fog lift- you might seriously want to consider doing nothing different, and staying exactly where you are- because it sounds like you have good care and a good care plan- and most importantly, its working for you!
Nikki
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