No new lesions on MRI

[Pistachio]

This was my first MRI where no new lesions were present. I was ecstatic, to say the least. But then I came home and read about it and saw that this can also signify a transition to SPMS. I'm nearly 51 and likely have had MS for about 10 years now. I was only officially diagnosed in March but the process started in 2020 (testing, MRIs, etc. Spinal tap in March 2022 - Canadian health care is slow). I had optic neuritis in early 2013, hence the reason they think it's been closer to 10 years now.

Anyway, should I be concerned about SPMS? How does one know if it was just a lucky MRI or a change to SPMS? Or, should I just thank my lucky stars, be grateful, and not give it another thought?

[pennstater]

I would discuss with your Neuro, but be prepared, you may not get any insight. My thoughts are that if you do not feel you are progressing, I would not focus on it. The question would be - what would you do differently if you were SPMS?

Unfortunately there is no test for it. Most of the meds approved to treat SPMS are for active SPMS, so still getting relapses/new lesions. There is a PDF available on DMTs that you can download on this link.

https://www.nationalmssociety.org/Wh...Progressive-MS

I was diagnosed in 2006 at 42, no new lesions since starting Tysabri in 2012. I don't feel I have progressed much at all since then, the problems I do have I can tie to residual symptoms from relapses prior to 2012. I am mostly the "invisible" symptoms - dizziness, cognitive functioning, numbness, burning, light/sound sensitivity, fatigue. Extreme fatigue and heat exacerbate the symptoms, but return to baseline when resolved.

I have had conversations with 3 neuros over whether I was SPMS since my symptoms started in 1993 and no DMT for 13 years. They could not answer, but all said something to the effect if I was, it was incredibly slow progression. They also all asked me if I wanted to risk stopping Tysabri? I wanted an answer, but since none was available, just decided to be thankful and keep taking the Tysabri just in case I was RRMS still. I will continue to reevaluate this and probably continue to torture my Neuro with questions he can't answer

I will probably never know if no new lesions was Tysabri doing its thing or I was already SPMS when I started and just fortunate. Either way, I am grateful.

[Jules A]

If you are feeling good, clinically stable and no new lesions that to me would be considered a win!

[Marco]

Hi there. I'm so glad that you had a MRI scan worth celebrating.

I was having flare ups every year for a number of years. Over that time I was put on 6 different DMTs, but none of them stopped lesion activity, relapses or disease progression.

I then started rituximab and have had no new lesions, no relapses and minimal disease progression. In fact, I'm not sure how much my health changes are attributed to MS and how much is just getting older. For reference, I had MS symptoms dating back to the late 1980s and started rituximab in 2015.

The majority of RRMS patients eventually transfer to SPMS with a wild range of outcomes. I am grateful to no longer deal with the highs and lows of relapses. I do believe I have transferred to SPMS, but my progression is so slow that I am most thankful.

In short, SPMS has been kinder and gentler to me than RRMS.

I remain diagnosed with RRMS only because my neurologist did not want to limit my medication choices by labeling me SPMS.

I am thrilled you had a great MRI report and hope future scans remain stable.

If you have transitioned I pray your progression remains slow and minimal. I included an ancient link about the transition that might be helpful.

I wish you well...


https://www.msworld.org/forum/forum/...0-rrms-vs-spms

[Mamabug]

This was my first MRI where no new lesions were present. I was ecstatic, to say the least. But then I came home and read about it and saw that this can also signify a transition to SPMS. I'm nearly 51 and likely have had MS for about 10 years now. I was only officially diagnosed in March but the process started in 2020 (testing, MRIs, etc. Spinal tap in March 2022 - Canadian health care is slow). I had optic neuritis in early 2013, hence the reason they think it's been closer to 10 years now.

Anyway, should I be concerned about SPMS? How does one know if it was just a lucky MRI or a change to SPMS? Or, should I just thank my lucky stars, be grateful, and not give it another thought?

SPMS was my experience beginning at age 52 (in 2014). When I began to show no new lesions and discontinue experiencing flares, my symptoms got continually worse and my MS Specialist indicated that I was likely in SPMS.

My symptoms began to stabilize after an acquaintance referred me to a functional medicine doctor after noticing that I had begun to use a cane following progression of my MS.

Are you experiencing noticeable decline? That's something to watch for.

Nevertheless, i recommend reading and following The Wahls Protocol. Discontinue gluten and dairy and GMO corn. Restrict processed sugars, increase fruits and vegetables to 6-9 daily. Consider healthy meats (free range chicken, grass fed beef, wild caught fish) instead of corn-fed meat. Consider organic fruits, vegetables, groceries.

Exercise regularly and moderately, practice self care (meditation, yoga, Buteyko breathing exercises, stress reduction, saying "no" when you need to).

Get rid of toxins in your home (plastics in your kitchen, your microwave, non-stick cookware). Use organic and non-toxic personal care products, cleaning products, etc.

Install a good whole house water filter.

Consider having amalgam fillings removed by a qualified dentist. Mine was recommended to my by my functional medicine doctor. If a dentist removes amalgam fillings without taking the proper precautions, the amalgam could go into your body and cause more, rather than less, problems.

These changes have returned my MS symptoms to stability, instead of continued steady progression. I began to make these changes in 2018 and went off of DMTs in 2019. Following 2014, they no longer seemed to be effective for me.