Question about progression; no new lesions

[loopey]

I just got the results from my MRI and I have no new lesions on my spine or brain.

I started Aubagio 3 years ago right after DX and though it appears to have reduced/eliminated flares (I have no new lesions since DX) I have gotten worse over the years. I am dizzy every day and that is worse now than it was, I can't drive because of the dizziness but could drive for the first couple of years after DX.

I have to use catheters now and still get UTI's all the time. I lose my balance if I move my head and had to start using a ca'sne. Sometimes my leg won't move when I'm walking; it just stops. And the sensory issues have increased over time.

Does this mean I am secondary progressive or is it just normal for this awful disease? My doctor said "not yet" when I asked at my last visit. I seem to recall reading some posts where people haven't had flares for a long time but are progressing and still taking DMD's?

[pennstater]

I am in the same category. I have had no lesions in almost 10 years, but did relapse sometimes and was progressing. Tysabri seemed to stabilize it for me.

If there is any chance you are relapsing remitting, a doctor won't change the label, as most DMTs are not effective for secondary progressive. Since MRIs are still not powerful enough to see everything, new lesions could be too small to see.


From years ago, I thought I remembered that a doctor might change the label after 5 years if no new lesions but clinically progressing. I don't know if that is still the case.

The other thing to be cautious of is whether the medications you are on can cause symptoms that are similar to your MS symptoms. I had one modification that affected me, increased my dizziness, which in turn worsened my balance. Once I was off that medication, back to my baseline.

You may want to look into whether vestibular therapy may help with dizziness associated to your head movements. It did help me. I also did PT for legs and arms. I didn't realize I had changed my gait due to the dizziness. I also had a right hip that kept giving out, so PT worked on strengthening this. T weakened from inactivity associated to dizziness issues. I was fortunate and with dizziness under control, gait corrected, and hip ok, I was much better. It could be you have already tried PT to no avail, but if not, it can't hurt to try.

Hang in there. MS is no fun ride.

[hunterd]

I have not had any changes on my MRI in 15 years. I was walking at the beginning, but now am in a wheelchair 24/7.
I remember hearing somewhere ( I think) that not always does progressions mean changes in the MRI. And also, the opposite is true, new lesions does not mean new progression.
The best person to answer your questions is your doctor. Many of us can guess at this, but all we can do is relate any experience we have had with this issue to you. And as you know, MS is different for every individual.
I wish you the best

[Marco]

Not all RRMS patients transfer to SPMS and there are no hard/fast rules for the transitions. Many doctors are reluctant to transition a patient to SPMS that may limit their treatment options (with insurance companies). It's fairly common that a neurologist may try MS disease modifying therapies on progressive patients HOPING for some benefit. I am considered SPMS and will continue to use DMTs hoping to alter the natural course of the disease. My goal is to maintain the highest quality of life possible and if DMTs can help then I am all for it.

MRI lesions are only one measurement of MS progression. When evaluating the effectiveness of a medication doctors often use the RPM Scale. RPM stands for R-elapses, P-rogression, M-ri. Of course, for progressive MS patients relapses generally do not occur and are not used as criteria.

Progression can occur with/without lesions or relapses. Progression can be difficult to measure, especially if your neurologist doesn't do extensive testing or take detailed measurements. Some people refer to these symptoms as your "daily condition" where walking, dexterity, vertigo and other activities are impacted. Patients that keep a written journal can often pick up on personal progression by reviewing their notes. I normally review and compile my notes prior to neurological appointments so progress can reviewed. Other patients use web-based tools like PatientsLikeMe to track their symptoms.

MRI: Lesions are still missed on MRI scans for a number of reasons. The two primary reasons are:

1. MRI is a point-in-time test and can miss lesion development between scans. Many lesions are asymptomatic so MRI scans are not conducted when there may be active lesions.
2. MRI technology is not sensitive enough to capture all lesions, especially cortical lesions. Most of us take MRIs at 1.5T and others at 3T, but there are research MRI scanners that go above 7T that can detect lesions not seen at lower levels. Other lesions are visible on cadaver studies, but I would recommend you avoid this testing.

Treatment for MS should be focused on the patient and not the MRI (treat the patient and not the MRI). Unfortunately, many neurologists have developed an over reliance on MRI and the reports of radiologists. Ideally, your neurologist personally reviews your MRI WITH YOU ... so you're on the same page.

Here's an example of how MRIs can normally miss lesion activity. http://www.msdiscovery.org/news/news...more-meets-eye




I hope this helps clarify some of your questions. Please let us know if you have follow up questions. I wish you well!

[DonnaD]

I have RRMS. I've was taking copaxone for about 17 years. Here and there I had attacks but the copaxone did it's job - not too many attacks and not major. Then I had about 5 years with no attacks at all but overall my condition was deteriorating (mostly my walking). I asked the neuro if it was SPMS. He said maybe but he didn't really think so. He just felt that copaxone wasn't right for me anymore. I switched to Tysabri (5 years ago). Still no attacks (like the last 5 years of copaxone) but also, my overall condition has been stable. No new lesions and same EDSS for years.