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General Questions and Answers For learning, sharing your experience, and exchanging information about Multiple Sclerosis. Please discuss medications in the Medications forum, and natural supplements in Tara's forum.

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  #1  
Old 10-18-2011, 08:57 AM
hope32 hope32 is offline
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If you have new symptoms but no active lesions ...

what happens next?

I had a similar post (about radiologist's report) but really didn't get any responses; I think it might have been too confusing so I'm trying a different angle.

I've had 7 new symptoms pop up over the past 2 months--muscle jerks, muscle spasms, muscle tension (not sure if it's technically spasticity), fatigue, weakness, mild visual-spatial symptoms, and "pins and needles" in my feet. I've also had issues recently that seem like low blood sugar and/or BP dropping and I'm not sure how that's related to the rest.

Just found out Friday that my brain and cervical spine MRI both show NO active lesions (at least, acc. to the radiologist's report.) This is not what the NP at the MS center and I were expecting at all! She was thinking c-spine lesions, moving to Ty or G, etc.

I have a follow-up appt scheduled for next Tuesday (75 miles away). But I'm curious; has anyone else had a time they had new MS-like symptoms but the MRI showed no active lesions? If so, what was the followup like? Did they test you for other stuff (I'm wondering about a B12 deficiency)? Did they turn you over to a PCP? I don't want to drive all the way up there only to be told, "Well, I guess it's not MS causing your symptoms; go see a primary care doctor." (I do have an appt with one scheduled for 10/28 to be established as a new patient.)

I'm really not sure what to make of my MRI results in light of all the new symptoms and getting answers from my MS center over the phone tends to be tough. :P
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2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins! ) Dec '09: Started Beta! Oct '13: Started Tecfidera!
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  #2  
Old 10-18-2011, 09:52 AM
lemstar lemstar is offline
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You said you have had 7 new symptoms pop up. What were your old symptoms?

I have had many new symptoms and changes with no change in my MRIs, resulting in the conclusion that this is just how my MS presents. I have changing sensory symptoms all the time. I have some weakness and balance issues that fluctuate.

It may just be how your MS manifests itself...
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  #3  
Old 10-18-2011, 10:07 AM
hope32 hope32 is offline
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Interesting! Thanks for sharing that. This is new territory for me.
My old symptoms: In 2001 I had acute ataxia on my right side. Cleared up after about 3 weeks but I had residual weakness on my right side for several years. (And my right knee still has a tendency to buckle.)

A month later, I started getting these intense spasms when I stood up or changed positions. They also went away after a few weeks.

My chronic symptoms were urinary frequency and urgency.

In 2007, I had "pins and needles" pretty intensely on my left side. That cleared up after 3 weeks also but my left side still tends to go numb easily (e.g. from sitting too long or lying on my left side).

Then nothing until the symptoms listed recently. Oh, there was also about 5 days last month where the urgency and frequency suddenly got MUCH worse. They sent me to my gyn to rule out a UTI but that was completely negative so they were assuming that was MS-related, too.
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2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins! ) Dec '09: Started Beta! Oct '13: Started Tecfidera!
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  #4  
Old 10-18-2011, 11:58 AM
ApVish ApVish is offline
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I have also read that during MS course, one can have Brain/Spinal atrophy that leads to symtoms getting more severe or entirely new symptoms.

So even though there are no new lesions, may be you have some amount of atrophy. I think they can find this out by comparing old and new MRI (if I am not wrong).

Did the radiologist report say anything regarding that ?
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  #5  
Old 10-18-2011, 12:35 PM
hope32 hope32 is offline
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Ah, I hadn't heard that. The radiologist's report didn't mention atrophy. Good to know.
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  #6  
Old 10-18-2011, 01:22 PM
RedTalon RedTalon is offline
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No changes in a mri is good even if you get new symptoms means no permanent damage or atrophy but would ask your neruo what they say since they are trained to noticed those things more then radiologists

Did the old symptoms fade at all if so it may mean you ended up with an attack in a new location
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  #7  
Old 10-18-2011, 10:34 PM
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Shiela Shiela is offline
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I have only one non-enhancing lesion but many, many symptoms indicative of both brain and spinal lesions.

One out of three radiologists reported that one lesion. The neurologist, however, confirmed brain atrophy on the right and left side of my brain, hyperintense rings around my lateral ventricles and cerebellar atrophy--none of which was reported by the radiologist. My first neuro did not pick up on these things either because, I believe, he was just looking at the radiologist's reports. The second neuro actually looked at the MRI images while I was sitting in his office because I asked him to.
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  #8  
Old 10-19-2011, 09:21 AM
hope32 hope32 is offline
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Wow, interesting! Sorry you had to deal with all that though. I definitely know the MS specialist plans to look at the MRIs at my appt on Tuesday and compare them to my previous MRI. (My appt is with the NP but she said to be sure to schedule the appt for a day when Dr. K is in so he can come go over the MRIs with us.)

The nurse I spoke to on the phone yesterday did tell me it was possible that I could have a new lesion that is causing my symptoms even if it was no longer enhancing at the time of the MRI.
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  #9  
Old 10-19-2011, 09:38 AM
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mommy1 mommy1 is offline
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As I understand it there is little evidence that MRIs match the exam in any case.
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  #10  
Old 10-19-2011, 11:01 AM
jumpinjiminy jumpinjiminy is offline
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I keep wondering why MRI is the tool of choice in monitoring and diagnosing neurological diseases when it clearly doesn't always catch what's going on inside. I can think of at least 9 distinct episodes I've had over the years. Despite the fact I've only had one MRI of each area done with an MS protocol, not one showed a lesion, new or old.

After hearing so many stories of people who have these attacks not supported by MRIs, or even worse, people who had been treated based on MRI evidence, then had their treatments and diagnosis revoked because of lack of MRI evidence later (then subsequently deteriorated), I'm becoming of the mind that they're pretty useless in some cases. They obviously don't tell the whole story.

I think in some cases, they're on the money for diagnosing and monitoring, but in others (another disease process perhaps, or a different form of MS?), they're worthless. It will be interesting to see how this gets sorted out in the years to come. It seems MRI study of the nervous system has a long way to go.

They seem to provoke more questions than they provide answers to sometimes.

Just my .02 centavos. But what do I know, I'm still in limbo and not part of the MS club. Not that I'd want to be . . .
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  #11  
Old 10-19-2011, 11:47 AM
lemstar lemstar is offline
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Look--medicine is far from an exact science. Its more of an intuitive art.
It's true in many disorders or diseases or "abnormalities: that the tests are not always directly and conclusively connected to symptoms/disease. Here's a different example: with deaf people, audiograms (that measure how much a deaf person can hear, as only 5% of the deaf population hears nothing) are not always indicative of how well a person functions auditorily. Someone with profound hearing loss may "hear" lots of sound, and read lips well, and speak well, when someone with a mild hearing loss may seem totally deaf as far as function.
So do we do away with the tests? No, we proceed with caution when looking at tests.
In my case, MRIs were absolutely conclusive in diagnosing my MS.
We use what we have, and learn to put things together the best we can.
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  #12  
Old 10-19-2011, 01:08 PM
hope32 hope32 is offline
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Interesting! With my previous attacks, there was always a big old "active" lesion that matched up with the symptoms so this is new to me!
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  #13  
Old 10-19-2011, 01:54 PM
MissJo MissJo is offline
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Hi Hope 32,
Not sure if this is what you want to hear but my nuero told me that sometimes the lesion is too small to be detected by the MRI. I have a similar problem in that my symptoms now are different from my original ones. Also they are on the other side of my body! I assumed that meant I had something new on the other side of the brain but no changes in my MRIs. I told my neuro about the new symptoms and she just said, well maybe it's too small to show up yet. I was certainly hoping for a better answer!
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  #14  
Old 11-13-2011, 10:23 AM
golfwidow golfwidow is offline
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My neuro told me that it can be two years before lesions show up on MRI..........this when I have been having new symptoms and my MRI is unchanged.............has anyone else been told this ???
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  #15  
Old 11-13-2011, 12:53 PM
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lynnepynne lynnepynne is offline
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Quote:
My neuro told me that it can be two years before lesions show up on MRI..........this when I have been having new symptoms and my MRI is unchanged.............has anyone else been told this ???
golfwidow, that would indeed be very interesting to know if this is the case...
(speaking from a Limboland citizen's perspective)
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