Optic Neuritis+2 old lesion- negative Lumbar puncture+copaxone=?

[tiffanyb2017]

I had ON in march and 2 old lesions that showed on an MRI. about a month after this my neurologists recommended a Lumbar Puncture. I have just come back from the doctor where my LP came back negative however, my neurologist is still recommending I take copaxone 3x a week because of the ON and lesions. about 8 /9 months prior to the ON I was experiencing other symptoms extreme fatigue , numbness and tingling, night sweats, swollen glands, poor balance, brain fog etc I went to my GP and had tests one but everything came back as normal although I truly felt something was wrong. now Im stuck trying to figure out if I should start the treatment or not. I much would have rather gotten a definitive diagnosis. although I don't want to have MS its seem much better than "maybe having MS" and starting the treatment anyway. the number she gave me were something like 60% of ppl with lesion + optic neuritis get MS but I also have had history of high BP which she said could be the cause of the old lesions. she said 10% of people with proven MS have LP that come back as negative for the disease. She was not treating me during the initial issues I was having before the onset of the ON so she can not say if that was an MS episode but she says the symptoms sound like it. im so confused and I really don't know what to do. Have you started treatment even though you were not diagnosed

[aspen2]

I agree that your first episode doesn't particularly sound like ms; more like a post viral syndrome. Although I wish my neurologist had been willing to diagnose me sooner, I also wouldn't want a misdiagnosis.  Assuming MS if it isn't means something else will be missed, and perhaps made worse by a DMT.

Please get a second opinion with an ms neurologist.  If it were me (and it isn't), I would ask for another six months without treatment, then another set of imaging.  In that time appropriate other testing can be done.  Did you have a huge panel of bloodwork, including vitamins and minerals?  Were things like APS, Sjorgens, Lupus, neurosarcoid, Lyme ruled out?  What about vascular conditions, given your history of bp issues?  How was your neuro exam?

If you have another episode, or another new lesion that is OBVIOUSLY ms plaque on the next set of imaging, then it doesn't matter if the old lesions were related to blood pressure, or that your first relapse probably wasn't related to ms.  At that point I would feel much more confident of an ms diagnosis and more willing to get treated.

Keep in mind that I am a patient who spent three years in limbo, not a doctor.  Were the first illness not related to ms, and the old lesions due to blood pressure, statistically 40% of people with ON DON'T go on to have ms, whereas only 10% (my neuro would say lower) of those with a negative LP have ms.

Keep us posted.

[supermum_ms]

Hi and welcome,

It's possible your neurologist is erring on the side of caution if she's focusing on you starting disease modifying drugs (DMD's) before you develop further diagnostic evidence to be 100% certain of MS, similar to the way clinical isolated syndrome (CIS) is recommended to start DMD's before another attack happens......by starting DMD's early in the disease process it could lower your odds of the ON developing into MS within the next 5 years.

The other possibility is that your neuro is considering what happened 8/9 months ago to have the potential of it being your first attack and the ON episode to be your second, 2 attacks is technically the minimum needed to meet the MS Mcdonald diagnostic criteria.

"extreme fatigue , numbness and tingling, night sweats, swollen glands, poor balance, brain fog etc" wouldn't usually be the type of symptoms suggestive/consistent with MS though because things like night sweats, swollen glands, all over numbness and tingling etc are typically the symptoms associated with viruses, infections etc

So whilst on the one hand she might be being cautious about calling it RRMS with the possibility the first episode wasn't MS related, she's still being proactive in recommending starting a DMD with the possibility that that episode actually was your first...

It's a lot more common with 'probable MS' to find your self in limbo, with the neuro deciding to 'wait and see' for up to a year or sometimes longer, than starting a DMD before a confirmed diagnosis. Most neuro's still tend to wait on MRI evidence and or until they are 100% sure it's MS before even talking about starting a DMD, which is why it's highly recommended when MS is suspected that patients see an MS specialist who is typically more up to date with MS research and often more proactive with starting DMD's.....I think you might find it really beneficial to get a second opinion, so you can make an informed and more confident decision on what the right plan actually is for you to do!
    
Hope that helps....JJ