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    HOW LONG BEFORE MRI SHOWED LESIONS

    HI! I AM NEW HERE. I HAVE BEEN SEEING A NEUROLOGIST FOR 2.5 YRS NOW FOR SYMPTOMS SIMILAR TO THOSE OF MS. I HAVE HAD MANY MRI'S AND ALL ARE NORMAL. FOR THOSE OF YOU WHO DID NOT HAVE LESIONS INITIALLY, HOW LONG WAS IT BEFORE YOU DID? IN JULY OR AUGUST MY NEURO TOLD ME THAT I DO NOT HAVE MS. SINCE THERE IS NOT A TEST THAT PROVES THAT, HOW THE HECK CAN SHE MAKE THAT STATEMENT?

    #2
    I feel your frustration. There are a lot of Neuro who will say no lesions no MS. Now this statement is not always true. One may have MS with very small lesions not visible on the MRI. They should do an NCV/EMG and lumbar puncture on you that is if they haven't .

    Even with those test if the are positive some Nuero wait until they see proof of 2 separate relapses before giving a diagnoses.
    As for when do lesions show up now they can be tricky devils . My lesions were hiding behind my eye and in my spine. Spinal lesions can be harder to spot.

    I'm no expert on lesions by any means . My MS was a hard diagnoses. Finding a really good MS Neuro is the key. And even then you need to find one that you can work with.

    I was also told in 2006 I didn't have MS . So when my symptoms got worse I simply thought that it was something else . Between 2006 -2009 the numbness in my legs ,hands arms ,right side of face ,vision all got so bad I have to use a wheelchair. In 2010 my MS was found. My neuro say that it was found very late. I have Spms (a steady worsening of symptoms with some long relapses at times) . I may have NMO but to chicken to find out.
    Again finding that one good MS doctor is the key. Also if are diagnosed with MS (IMO) get a second opinion . I know that that seem off the wall for someone to say but MS is bad and its good to be as sure as possible. I got 4 seconded opinions.
    I hope that you find answers soon.
    dx.SPMS (baclofen,gabapenin,norco)
    started tecfidera 7/10/2013
    rituxan 11/13/2012 stopped due to side effect &it didn't help me (for RA and MS)
    copaxone started 4/2012 but stopped due to bad allergic reaction
    Matt.19;26 “With man this is impossible, but with God all things are possible.”

    Comment


      #3
      Hi,

      I've been in limbo for 6 1/2 years now. Still no diagnosis. All of my MRIs were normal from 2006 to 2010 when several T2 hyperintensities started showing up. However, they are the wrong size, shape, or location for MS lesions.

      I'll probably never get a diagnosis of anything, and after all this time searching, I'm actually okay with that. I can't afford to go to my neurologist anymore, and I can't afford any more MRIs. I'm not having as many exacerbations anymore, though I am having one now. But I'll just have to wait it out.

      Your doctor is telling you that you don't have MS because you don't meet the McDonald criteria. Have you been tested for the other things that can cause similar symptoms? (Vitamin B12 deficiency, Vitamin D deficiency, Lyme disease, etc.) If not, you definitely need to get tested for everything. MS is a diagnosis of exclusion, meaning everything else has to be ruled out first.

      I hope you get some answers soon. Until then, be sure to live and enjoy your life, no matter what is going on with your body.

      Hugs,

      Lisa
      Joy is not the absence of suffering. It is the presence of God.
      Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
      Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

      Comment


        #4
        Sometimes it depends on your doctors order: For example does he/she order R/O MS. Because this protocol gives many more slices and an in depth look at the brain than a regular MRI of the brain with and w/o contrast.

        Secondly, a 1.5 Tesla MRI will not pick up may small lesions where a 3 Tesla machine will. Many facilities only have the 1.5 T machines. Unless you have glaring lesions, they won't show up.

        These are some reasons lesions don't show up right away.

        Lisa
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Hello all,
          I can relate to the frustration with this.

          An MRI that I had one year ago when I was pretty much symptom free showed a few white matter lesions. The neuro said that they were in the wrong area of my brain and said that it must be my migraines that caused them. I don't have migraines, but by then he had stopped listening to me.

          I am in the midst of I guess what one would call it a flare up and I am left with my right leg not working properly when I walk and I walk like I'm drunk. I use a cane.

          I had an MRI during this latest flare up and now I have an MRI which shows no lesions.

          I don't know if I will ever get any answers. But I'm hard headed and so is my GP so we will continue to pursue.

          I can empathize if that is of any help.

          Take care,
          swingingwillow
          Take care,
          swingingwillow
          Limbo lander on hold with a fast busy signal...

          Comment


            #6
            I just spent 9 years in limbo with two MRI's done plus a lumbar puncture. In 2008 after the MRI/LP were done the local neuro stated that it was definitely NOT MS. Plunked along the last few years until I developed bilateral trigeminal neuralgia with some other additional stuff and my new GP decided that I really needed to skip the local not-so-helpful neuro and go straight for a specialist. Spent an hour doing history and a neuro exam with the MS specialist and he stated that I unequivocally have MS.

            So, yes, you may not have MS. You may also have it. So many people end up in this long haul and it really screws with you. The best words of advice I can say are to try and coast along and live with your symptoms as best you can for periods of time between testing. Not having that label makes it very hard to get recognized or treated appropriately at times, but that's not your fault. At times when people have asked in the past why I am using my cane (because I only need it during flares or when i'm really hot or worn out) I tell them 'because my leg won't work'. Most people are too embarrassed to quiz you further, unless they're close enough to you that you don't mind giving them the whole song and dance.

            Hang on in there. Try and look up what supplements/diet people follow if they have MS - won't hurt you to follow it.

            Comment


              #7
              I JUST WISH MY DOCTOR WOULD SAY, I DON'T KNOW AT THIS POINT WHAT IT IS RATHER THAN SAYING IT'S NOT MS. IT SEEMS THAT MANY OF YOU HAVE BEEN TOLD YOU DON'T HAVE MS TO ONLY LATER BE DIAGNOSED WITH IT. I HAVE SLOWLY BEEN GETTING WORSE OVER THE LAST 2.5 YRS AND I CAN'T HELP BUT FEAR WHAT IS NEXT. I HAVE HAD AM EMG BUT NEURO WANTS TO WAIT ON THE LP. SHE SAID THAT NO MATTER WHAT WAS FOUND, IT WOULDN'T CHANGE ANYTHING.

              Comment


                #8
                There was a study cited some time ago showing that PwMS who present without MRI lesions rank much higher on the EDSS scale upon diagnosis than those who do show MRI lesions.

                Those of us without lesions who eventually do end up being told we have MS should just accept the fact we're going to be pretty far along the disability scale, or dead, before anyone decides to diagnose or treat it.

                Until then, all we have are steroids, if we can find a doc that isn't afraid to use them when needed.
                It's not fatigue. It's a Superwoman hangover.

                Comment


                  #9
                  Originally posted by lusciousleaves View Post
                  There was a study cited some time ago showing that PwMS who present without MRI lesions rank much higher on the EDSS scale upon diagnosis than those who do show MRI lesions.

                  Those of us without lesions who eventually do end up being told we have MS should just accept the fact we're going to be pretty far along the disability scale, or dead, before anyone decides to diagnose or treat it.

                  Until then, all we have are steroids, if we can find a doc that isn't afraid to use them when needed.
                  Is it possible to google that do you know? Can you suggest what to google? I'm just interested in reading more. Thanks for letting us know and if you are able to help further that would be great.

                  Take care,
                  swingingwillow
                  Take care,
                  swingingwillow
                  Limbo lander on hold with a fast busy signal...

                  Comment


                    #10
                    I was probably reading about MRI negative MS, or some similar search term.

                    "MRI negative MS edss score at diagnosis" led to the following article:

                    http://www.medmerits.com/index.php/a...e_sclerosis/P9

                    Of particular is the last paragraph concluding that in the absence of objective evidence of MS, further followup studies should be minimized. This is the point where I am, because of negative MRIs.

                    However, earlier in the article, they also mention that there is a lot of autopsy positive, undetected MS.

                    The only hope I see for myself is to find out that it's something else, because with negative MRIs, I'll never get dx or treated, even if it is MS.

                    Keep looking. Especially if your MRIs are negative.
                    It's not fatigue. It's a Superwoman hangover.

                    Comment


                      #11
                      Originally posted by lusciousleaves View Post
                      There was a study cited some time ago showing that PwMS who present without MRI lesions rank much higher on the EDSS scale upon diagnosis than those who do show MRI lesions.

                      Those of us without lesions who eventually do end up being told we have MS should just accept the fact we're going to be pretty far along the disability scale, or dead, before anyone decides to diagnose or treat it.

                      Until then, all we have are steroids, if we can find a doc that isn't afraid to use them when needed.
                      After reading through the website, I think you have it backwards. People who present with negative MRIs, or very few lesions have a lower EDSS at time of diagnosis and generally have a better prognosis.

                      Those who present with many lesions both white and gray matter, have higher EDSS (only makes sense), and a poorer prognosis.

                      What you might have read:

                      "In some patients with clinically definite multiple sclerosis but negative MRI, other techniques such as evoked potentials or magnetic transfer imaging will show damage. When CSF has no oligoclonal bands, as in approximately 3% of patients, prognosis is better and brain MRI lesions are fewer"...This just means that sometimes they can see damage in your dirty appearing white matter and not just your regular white matter which gives you a questionable MRI.

                      Also those with neg OCBs throughout disease have better prognosis, and tend to have fewer lesions.

                      The important thing is that the McDonald Criteria has to be followed. It is a worldwide criteria to keep people from being diagnosed willy-nilly and given a dangerous DMD.

                      From the article some suspect things that your neurologist considers when thinking of MS or not:

                      "A diagnosis of multiple sclerosis should be judiciously questioned when there are “red flags” such as:
                      1. no eye findings (optic nerve or motility) or prominent uveitis
                      2. no remissions
                      3. localized disease
                      4. atypical clinical features: aphasia, altered consciousness, extrapyramidal symptoms, homonymous visual field defects, no long tract findings, no fatigue or heat sensitivity, no sensory or bladder symptoms, no constipation, progressive myelopathy without bladder involvement, peripheral neuropathy, or late or early age of onset
                      5. repeated episodes in the same part of the CNS
                      6. normal CSF and no oligoclonal bands (Rudick et al 1986); high white count > 50/ul or protein > 100 mg/dl
                      normal MRI, or atypical MRI with small lesions (<3 mm), basal ganglia or internal capsule involvement, diffuse confluent white mater lesions, or longitudinal cord lesions spanning more than 2 vertebral segments.

                      In the absence of objective evidence for multiple sclerosis or other disease, follow-up investigations should be kept to a minimum."
                      Disabled RN with MS for 14 years
                      SPMS EDSS 7.5 Wheelchair (but a racing one)
                      Tysabri

                      Comment


                        #12
                        I'm sorry if my post was unclear, but this isn't the study I was referring to with that statement. I did a cursory search and didn't find it, but found this instead.

                        No MRI lesions means a delay in diagnosis, sometimes for years. There are people on this forum with MS who went 8 or more years before lesions showed up on their MRIs, after the start of symptoms.

                        Were they diagnosed or treated before then? In almost all cases, no. There is only one person I know of on this forum that was diagnosed without MRI lesions, and that person had significant disability at diagnosis. All of the others were diagnosed before MRIs were the standard requirement in diagnosis and monitoring response to DMD treatment.

                        By the way, that article posted above is very interesting. Thanks for trying to clarify things. I'm not an MRI purist and it's probably a good thing I'm not an MS doc, because I don't see how they can so solidly rely on them for diagnosing such a complex and varied disease.

                        It's been posted before that 70% of the 5% MRI negative MS patients actually do have MS. The other 30% who didn't have MS were contaminating the research pool and skewing the studies toward a negative response. Now 100% of MRI negatives upon presentation go without diagnosis and treatment, sometimes for exceptionally long periods of time, despite the fact that 70% of them almost invariably have MS. So while they aren't, in fact, submitting themselves as research subjects, they also pay the price by getting denied treatment that could help them for years before they're allowed to try it and see.

                        There is a whole lot of conflicting information out there about MRIs, their relationship to disability or not, big lesions, small lesions, abnormally placed lesions, and nobody really quite has it figured out yet. This, in my very humble negative opinion, is scary they rely so strongly on this method for a diagnosis and treatment program.

                        I've been around here awhile and have seen people diagnosed and undiagnosed based upon MRI lesions. They've had successful treatments, then been yanked from treatment and their conditions deteriorated all based on the disappearance of lesions on MRIs.

                        When I bring this up to other docs, they're absolutely in denial this ever happens and feel the information being disseminated online is false. Really? While that's always a possibility, I don't think that's actually the case hearing most of these stories.

                        It leaves a lot of questions in my mind as to how messed up the diagnosis and treatment of MS is, and it seems to me there are a lot of people falling through the cracks in an attempt to attain MRI purity in research studies. Follow the money. If your brand of MRI negative MS is riskier to enter into a research study because there is a 30% chance it might not be MS, too bad for you, 70% of the 5%rs! To me, it all seems pretty unethical and cruel. Just my $.02 that have been gathered after much research, watching, discussing and reading. I hope nobody takes offense to my comments here, because it's just my unprofessional, uneducated, and probably unenlightened slanted opinion.

                        Otherwise, I appreciate you pointing out the sections of the article claiming those with no OCBs or MRI lesions typically have a less serious course. If in fact what I have is MS, that is always a good thing to keep in mind during these rougher times when it's so not feeling that way. Thank you for that. It brought light to my dark day.
                        It's not fatigue. It's a Superwoman hangover.

                        Comment


                          #13
                          Originally posted by lusciousleaves View Post
                          I was probably reading about MRI negative MS, or some similar search term.

                          "MRI negative MS edss score at diagnosis" led to the following article:

                          http://www.medmerits.com/index.php/a...e_sclerosis/P9

                          Of particular is the last paragraph concluding that in the absence of objective evidence of MS, further followup studies should be minimized. This is the point where I am, because of negative MRIs.

                          However, earlier in the article, they also mention that there is a lot of autopsy positive, undetected MS.

                          The only hope I see for myself is to find out that it's something else, because with negative MRIs, I'll never get dx or treated, even if it is MS.

                          Keep looking. Especially if your MRIs are negative.
                          Thank you for sharing the information.

                          Take care,
                          swingingwillow
                          Take care,
                          swingingwillow
                          Limbo lander on hold with a fast busy signal...

                          Comment


                            #14
                            Originally posted by lusciousleaves View Post
                            No MRI lesions means a delay in diagnosis, sometimes for years. There are people on this forum with MS who went 8 or more years before lesions showed up on their MRIs, after the start of symptoms.

                            Were they diagnosed or treated before then? In almost all cases, no. There is only one person I know of on this forum that was diagnosed without MRI lesions, and that person had significant disability at diagnosis. All of the others were diagnosed before MRIs were the standard requirement in diagnosis and monitoring response to DMD treatment.
                            I'm not sure who may be referring to. However, I was diagnosed with a negative MRI (yes, the MRI was around when I was diagnosed ). There were no treatments at the time I was diagnosed and I have choosen not to use them.

                            My EDSS is very low per my neuro. I am still very active and use an Elliptical at level 7 for 2 miles and I use a weight machine.

                            I have symptoms that go back to childhood, diagnosed at the age of 24 and I am 51. I have no idea when lesions showed up. My first MRI was done during the diagnostic process in 1985 and I never had another MRI until 2004. My current MRIs showed quite a bit of improvement.
                            Diagnosed 1984
                            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                            Comment


                              #15
                              Loucousleaves: Thanks for clarifying. It is my guess that your MRI is not truly negative. MS itself means many scars, but also has many more fascists to its pathology. Depending on the strength of MRI you get, the better picture of disease you get. Anything less that 3T could miss small lesions. 7 or 8 T used in research can pick up many more lesions and forming lesions.

                              There are parts of Normal appearing white matter that can be damaged that show a tendency toward MS early lesions as it shows up as dirty appearing white matter on FLAIR and with contrast uptake.

                              Another early clue is brain atrophy that happens in many MS patients and can sometimes be seen before the lesions.
                              The butterfly effect.

                              The fact is they are looking for more than just lesions when you get an MS protocol MRI. Many early signs can be seen.

                              This is why the McDonald criteria allows for use of evoked potentials and other parameters such as LP to be used in diagnosis.

                              My best advise is to go to an MS center to be tested. This way you know you are getting a comprehensive MRI at the right Tesla value with the right cuts and the neuroradiologist is trained to look for these subtle differences.

                              Good luck.
                              Lisa
                              Disabled RN with MS for 14 years
                              SPMS EDSS 7.5 Wheelchair (but a racing one)
                              Tysabri

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