tiffanyb2017 24/05/17
Last reply 1 year ago
OpticNueritis+2 old lesions+ngt puncture

hello, I am in the same boat as you 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?

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tiffanyb2017
1 year ago

hello, I am in the same boat as you 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?


stumbler
1 year ago

Hi @tiffanyb2017 , we have to give our Neuros our trust that they are acting in our best interests.

As the potential to progress to MS is so high, it is being very proactive to start treatment now, to prevent this progression. Any progression will be irreversible damage which may, or may not, be disabling to you.

Starting treatment is therefore a form of insurance for the future. Like all insurance, it’s nice to have it, but we’d prefer not to have to use it.


spunky
1 year ago

Hi tiffanyb2017
I had ON almost 2 years ago and have 5 old lesions. I have had no other symptoms (before or after) other than maybe fatigue. I have been on treatment (Aubagio) for over a year now.
I would rather take it than take the chance of further damage and my MS Neuro believes it will likely turn out to be MS.

I am sure you are in shock as I know I was and to be honest I still am. I try to research as much as I can so I can make the best decisions for myself.

Best wishes!


californiadreamin
1 year ago

@tiffanyb2017 this is a tough spot to be in. There is some thoughts that having your LP come back negative might be a different type of MS then what most people have. Its just a few things I read on barts, but the reason its related is because it might impact the effectivness of the drugs/DMTs. One thing to consider is that this test is coming out very soon and it might be worth seeing if you can get it done as another data point:

https://iquity.com/patients-ms

The second thing I would suggest is consider some lifestyle modifications like OMS (overcomingms.org). Since my wife has MS our family moved to a lot of its principals just to help reduce risk for my kids. I believe the lifestyle changes are all positive with or without MS but in particular will hopefully reduce the odds of getting MS. Consider taking a look and seeing if doing something preventitive would be a good way to hedge as well.

Even though its uncertain hopefully you will go a long time and never know if you have MS.

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