Announcement

Collapse
No announcement yet.

HOW LONG BEFORE MRI SHOWED LESIONS

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    22, my MRIs were done on 3T and read by a neuroradiologist. The brain MRI was MS protocol, thin slices through the brain stem and internal auditory canal. Dirty white matter was never mentioned as a possibility. It will be nice when the 7T MRIs can be used, or even an fMRI. Until then, it's pretty hopeless.

    Snoopy, I think you are the one I was thinking of. Didn't you have TM on presentation or some similar serious issue?

    In either case, it's good to hear you've done so well, even without DMDs. I hope you continue to do well.
    It's not fatigue. It's a Superwoman hangover.

    Comment


      #17
      lousciousleaves: Well, you have been through it then. I guess it is just wait and see for now then. My 3T picked up several tiny lesions not seen on the 1.5, in addition to my big ones, and several tiny black holes. It also showed brain atrophy.

      Sorry you are having such a hard time getting diagnosed. Sometimes it takes lesions up to a year to appear on 3T so maybe they will do another MR in a year or during your next exacerbation.

      It is tedious.

      Have you had an LP? or evoked potentials?

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

      Comment


        #18
        Yes, I had a normal LP, a slightly abnormal AER, a slightly abnormal VNG, slightly abnormal neuro-ophth exam, slightly abnormal EEG, and slightly abnormal neuro exams. Everything else is normal. There have been 12 distinct flareups in two years. I start getting back to normal and back on track and it hits again. It's annoying. I'm annoyed.

        None of this is helping my lifelong distrust of doctors.
        It's not fatigue. It's a Superwoman hangover.

        Comment


          #19
          Originally posted by lusciousleaves View Post
          Yes, I had a normal LP, a slightly abnormal AER, a slightly abnormal VNG, slightly abnormal neuro-ophth exam, slightly abnormal EEG, and slightly abnormal neuro exams. Everything else is normal. There have been 12 distinct flareups in two years. I start getting back to normal and back on track and it hits again. It's annoying. I'm annoyed.

          None of this is helping my lifelong distrust of doctors.
          That is a lot of flare ups for MS. Have your doctors considered the possibility that you might have Myasthenia Gravis? I don't know all of your symptoms, but it does cause extreme fatigue, can cause mild tingling and numbness, abnormalities in the VNG and neuroopthalmology exam. It also has several exacerbations. Heat intolerance, and mimics MS very closely.

          Just didn't know if they had though about it. It has a clear MRI, and LP.
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #20
            Originally posted by 22cyclist View Post
            That is a lot of flare ups for MS. Have your doctors considered the possibility that you might have Myasthenia Gravis? I don't know all of your symptoms, but it does cause extreme fatigue, can cause mild tingling and numbness, abnormalities in the VNG and neuroopthalmology exam. It also has several exacerbations. Heat intolerance, and mimics MS very closely.

            Just didn't know if they had though about it. It has a clear MRI, and LP.
            My local docs think it's systemic, like lupus, or blood disorder, just not fully expressing itself yet or showing up in blood labs. I don't know that anyone has looked into MG. It seems more CNS than PNS, although with only one NCV (normal) and no EMGs, can anyone really tell the difference?

            It's also autoimmune, so that would fit with the patterns and triggers.
            It's not fatigue. It's a Superwoman hangover.

            Comment


              #21
              Originally posted by lusciousleaves View Post
              My local docs think it's systemic, like lupus, or blood disorder, just not fully expressing itself yet or showing up in blood labs. I don't know that anyone has looked into MG. It seems more CNS than PNS, although with only one NCV (normal) and no EMGs, can anyone really tell the difference?

              It's also autoimmune, so that would fit with the patterns and triggers.
              Perhaps lupus, but look up MG. It has many of the same symptoms. That is just a lot of exacerbations to have with no lesions showing on MR, not even white patches.

              CFS is an autoimmune disease as well. I am sure they tested for lyme when they did your LP. Sometimes though it can read negative and still be positive. Do you live in a tick infested area? Keep looking for an answer.

              Do you have more pain or numbness?

              Keep looking until you find an answer. It seems MS doesn't fit. Something will though.
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #22
                It's too hard to explain without writing a book, so I'll just say there are elements of both to keep it brief. The pain is from muscle spasms or nerve pain, sometimes I have eye pain. The numbness is rare, but has happened and lasted a good while before it cleared up. There is also L'hermittes, but before this flareup, it only happened when I'd sneeze and throw my head forward.

                I've also had a lot of migraines in the last 15 to 20 years, and there are no lesions from those either. With as many severe headaches as I've had, you'd think they would have caused lesions. This is another reason why I don't trust MRIs. If ever I do end up with a lesion, or white spot, or two, it will just be blamed on the migraines. I don't think it really matters if I ever have another one or not. Maybe we should start trying MRIs when I'm not symptomatic.
                It's not fatigue. It's a Superwoman hangover.

                Comment


                  #23
                  Originally posted by 22cyclist View Post
                  Perhaps lupus, but look up MG. It has many of the same symptoms. That is just a lot of exacerbations to have with no lesions showing on MR, not even white patches.

                  CFS is an autoimmune disease as well. I am sure they tested for lyme when they did your LP. Sometimes though it can read negative and still be positive. Do you live in a tick infested area? Keep looking for an answer.

                  Do you have more pain or numbness?

                  Keep looking until you find an answer. It seems MS doesn't fit. Something will though.
                  It's funny there is this perception of how many flareups constitute a typical pattern of MS. How can that be true when there are so many triggers? The first year, which was the worst, I had an underlying gallbladder inflammation which caused fevers. Once that was removed, the number and intensity of flareups declined considerably.

                  I also contracted a couple of respiratory flus that caused flareups. Then there were the times I overexerted myself and caused flareups. Plus, there were a couple of flareups for no reason.

                  I'm suspecting the fact there are no MRI lesions is something unique to my system. I heal very quickly and I don't swell much when I get injured. This is a lifelong pattern. Maybe this is working in my favor with whatever disease process this might be, but working against it in figuring out what it is.

                  Based on these facts, how could MS be ruled out simply because it doesn't match with the standard perception of how many flareups constitute a typical disease course?

                  They tested for Lyme's 2x. Both negative.

                  Trust me, I don't want to have MS. I'd much rather have something more treatable. I'd even more like to have nothing. In the meantime, I've done a lot of work identifying what triggers this, and it's clearly immune system related. Whatever stirs up the inflammatory process, stirs up this disease. It could be a paraneoplastic thing, for all we know. But until an actual cancer shows up, they won't even bother looking for that as a cause. This, to me, is more disturbing than the possibility of having MS and going untreated.
                  It's not fatigue. It's a Superwoman hangover.

                  Comment


                    #24
                    Originally posted by lusciousleaves View Post
                    It's funny there is this perception of how many flareups constitute a typical pattern of MS. How can that be true when there are so many triggers? The first year, which was the worst, I had an underlying gallbladder inflammation which caused fevers. Once that was removed, the number and intensity of flareups declined considerably.

                    I also contracted a couple of respiratory flus that caused flareups. Then there were the times I overexerted myself and caused flareups. Plus, there were a couple of flareups for no reason.

                    I'm suspecting the fact there are no MRI lesions is something unique to my system. I heal very quickly and I don't swell much when I get injured. This is a lifelong pattern. Maybe this is working in my favor with whatever disease process this might be, but working against it in figuring out what it is.

                    Based on these facts, how could MS be ruled out simply because it doesn't match with the standard perception of how many flareups constitute a typical disease course?

                    They tested for Lyme's 2x. Both negative.

                    Trust me, I don't want to have MS. I'd much rather have something more treatable. I'd even more like to have nothing. In the meantime, I've done a lot of work identifying what triggers this, and it's clearly immune system related. Whatever stirs up the inflammatory process, stirs up this disease. It could be a paraneoplastic thing, for all we know. But until an actual cancer shows up, they won't even bother looking for that as a cause. This, to me, is more disturbing than the possibility of having MS and going untreated.
                    Some could be pseudoflares. A true exacerbation lasts 24-48 hours, and then another does not start for at least another month. But in the normal round of things people with MS generally have 2-4 MS exacerbations per year. Were you ever treated for any of these exacerbations?

                    If your MRI did not show anything after any of these exacerbations, chances are you do not have MS. That is a lot of exacerbations. Something would have shown up considering you had the right protocol, the right density MRI, and the right people reading it.

                    I know that is hard to hear. Perhaps you should consider lupus which has many similar symptoms too. I would have to agree with your 4 neurologists at this point and look for another cause. There are about 400 mimicker diseases of MS. Therefore most people have a 1:400 chance of having it. With a normal MRI, several normal MRI, and still having as many symptoms as you are having, a negative LP, something is going on, its just probably not MS.

                    I hope you find what it is so you can get treatment for it soon so you can feel better.

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

                    Comment


                      #25
                      They were all flares with symptoms that worsened for days and then gradually cleared up over weeks to months, and some more than a year.

                      Excessive heat exposures for me, cause actual flares.

                      We will have to agree to disagree on this possibly being MS. I think any doc that rules it out is not exactly doing their job. They can't see a patient and say, "You don't have MS," unequivocally when there are no actual tests to state 100% that isn't the case.

                      I've heard it said it's a clinical diagnosis, but then others say it's a diagnosis of exclusion. Which is it? There are some clinicians that think of it one way, and others that think of it the other. And consequently, I have met the current McDonald criteria. Any of these docs could have called it MS by now.

                      There has been a concerted effort to standardize the diagnostic process, but all this means is that many experts put their heads together and agreed on a set of guiding principles for identifying it's statistical likelihood. This doesn't change the reality of the disease, how varied it is from individual to individual, or the fact that they don't even know if it's one disease or a collection of disease with a similar presentation. It also doesn't change the fact that it could exist outside of the widely agreed upon set of statistics.

                      As far as exacerbations vs. pseudoexacerbations, there is disagreement on what an exacerbation is vs. a pseudoexacerbation. If you go by the standard definition of an exacerbation (something that lasts days or longer), I've had about 12 in the last two years. If you add in the length of time required between exacerbations and that they can't be related to an infectious illness, well then, that cuts it down to probably 2 or 3 exacerbations in 2 years. This being because an exacerbation to me is anything that gives me difficulty functioning and comes with new symptoms that last for days to months.

                      So I'm not exactly accepting of the standard terms for what constitutes a true exacerbation. I also question the validity of this so-called pseudoexacerbation. Personally, I don't think such a thing exists. There is Uthoff's phenomenon, sure, which has a plausible explanation and resolves within a defined set of predictable environmental parameters. Outside of that, my suspicion is that anything else is an exacerbation of the inflammatory process.

                      Why do I think that? Because of personal experience combined with lots of reading on the topic. Nobody has identified the mechanism behind a pseudoexacerbation. It appears to me to be more of a commonly accepted medical myth than something that has actual scientific data to back it up.

                      On the topic of exacerbations and MRIs, they don't always jive. MS patients often have MRI lesions without symptoms. They often have new symptoms without lesions. The two aren't necessarily connected. Sometimes they are, and so the very idea that most times they're considered to be connected I find somewhat of a shock this is widely accepted.

                      Then there is the fact that MS, meaning multiple scars, if we get very technical with the language, can be caused by many different disease processes. It seems to me that trying to identify and treat one disease process, in a sea of possibilities, that leaves multiple scars in the CNS is like trying to nail jello to a wall.

                      If the true identity of MS is a disease with a collection of common symptoms showing MRI lesions, then that is a new definition based on an inexact and sometimes inaccurate new piece of equipment, subject to human error. It's as arbitrary as any other test method that came before it, and possibly more so, simply for the fact that MRI lesions don't always correlate with symptoms or exacerbations.

                      As far as I can tell, this MRI/DMD connection is an attempt to narrow down a portion of actual MS cases that can be monitored by an expensive test, whose MRI evidence can sometimes be influenced by an expensive medication. The new data coming out is showing that DMDs don't always influence the course of the disease over the long term, and even with MRI evidence, it's all a shot in the dark anyway. Genetic testing might be a step in the right direction, but it's probably years away from clinical usefulness.

                      So there you are. My most deepest thoughts on MS, the diagnosis of MS, and the current market for MS drugs and testing procedures. My feeling, there are a whole lot of people falling through the cracks because of MRIs, which might help a company make profits on a new drug that influences MRI results. In relying so heavily on this one type of test, there might be a whole group of MS patients being missed and their disease process not being researched as a result.

                      Innovation can sometimes slow progress. This might be one of those examples.
                      It's not fatigue. It's a Superwoman hangover.

                      Comment


                        #26
                        One other thing, I'm sort of hoping that someone decides to see if there is a peripheral nerve component to what's ailing me. If so, then it would point in the direction of something like CIDP, which is treatable with IVIG and sometimes curable. This, I would consider the best case scenario. I hate that it's taking so long to look into it.

                        Thank you for the well wishes. I'm currently being treated with prednisone for a second time. The first time I was treated with oral steroids for a flare involving my vision. I ended up having 2 more flares while on the prednisone, all before having the gallbladder removed. I have a strong feeling that was aggravating everything else.
                        It's not fatigue. It's a Superwoman hangover.

                        Comment


                          #27
                          I did not mean to upset you at all. If you had met the McDonald criteria, you would have been diagnosed. From the tests you have told me, you don't meet it.

                          Here they are:


                          ______________________________________________
                          CLINICAL PRESENTATION
                          2 or more relapses;
                          2 or more objective
                          clinical lesions

                          ADDITIONAL DATA NEEDED
                          None needed
                          clinical evidence desirable but must be consistent with MS.
                          _______________________________________________
                          CLINICAL PRESENTATION:
                          2 or more relapses
                          1 objective clinical lesion
                          ADDITIONAL DATA NEEDED:
                          Dissemination in space demonstrated by:
                          1. MRI
                          2. Or a positive CSF and
                          2 or more MRI lesions
                          consistent with MS
                          3. Further evidence
                          clinical attack involving
                          a different site.
                          ________________________________________________
                          CLINICAL PRESENTATION
                          1 relapse
                          2 or more objective
                          clinical lesions 1. MRI
                          2. Or second clinical
                          attack.
                          ADDITIONAL DATA NEEDED:
                          Dissemination in time demonstrated by:
                          1. MRI
                          2. Or second clinical
                          attack.
                          ________________________________________________
                          CLINICAL PRESENTATION:
                          1 exacerbation
                          1 objective clinical
                          lesion
                          2. or a positive CSF and
                          2 or more MRI lesions
                          consistent with MS.
                          AND Dissemination in
                          time demonstrated by:
                          1. MRI
                          2. Second clinical attack
                          ADDITIONAL DATA NEEDED:
                          Dissemination is space demonstrated by:
                          1. MRI
                          2. or a positive CSF and
                          2 or more MRI lesions
                          consistent with MS.
                          AND Dissemination in
                          time demonstrated by:
                          1. MRI
                          2. Second clinical attack
                          ________________________________________________
                          CLINICAL PRESENTATION:
                          Insidious neurological progression
                          suggestive of MS
                          (primary progressive)


                          ADDITIONAL DATA NEEDED:
                          One year of disease progression AND 2 of the following:
                          1. Positive brain MRI
                          (9 T2 lesions, or 4 T2 lesions and a positive VEP).
                          2. Positive spinal CSF
                          3. Positive spinal cord MRI with 2 focal T2 lesions.
                          Disabled RN with MS for 14 years
                          SPMS EDSS 7.5 Wheelchair (but a racing one)
                          Tysabri

                          Comment


                            #28
                            I'm upset, but not at you or anything you said.

                            They way I read the McDonald criteria, having 2 or more relapses requires no further evidence. Supporting clinical evidence is recommended, but not required. I have supporting clinical evidence as well. It may be weak, or weak in the opinions or viewpoints of others, but it's still clinical evidence.

                            A doc could call this MS if they wanted to. They don't want to. So far it's been mild. But when my breathing is affected like it was this time and last spring, I get a little upset not having any other means to fight this than oral steroids. I worry that I could die, in a matter of minutes, alone. Or I could call an ambulance and they would have no idea what to do with me when they got here.

                            The whole thing kind of makes me feel like my life doesn't count in the big scheme of things. It feels like statistics, labels, insurance and money are all more important than what I do for my family, community and friends, or for myself and our quality of life.

                            They could treat this, what I have. I'm sure of it. The response to steroids is the telling thing. If I had money in my pocket, I'd pay for IVIG myself, because I have a feeling that would work for what I have, MS or not. But I don't have money, so I have to sit back and wait for someone else to make that call for me, and fight for the right to get treated. I have insurance, and it's expensive. Things shouldn't be this way. I'd much rather nip this in the bud than let it continue, but I'm powerless to do anything meaningful to fight it other than annoy the heck out of my doctors when it acts up again and beg for tests to prove to the insurance industry I have something that can be treated.

                            It will be so good to get past this point someday.
                            It's not fatigue. It's a Superwoman hangover.

                            Comment


                              #29
                              Originally posted by lusciousleaves View Post
                              I'm upset, but not at you or anything you said.

                              They way I read the McDonald criteria, having 2 or more relapses requires no further evidence. Supporting clinical evidence is recommended, but not required. I have supporting clinical evidence as well. It may be weak, or weak in the opinions or viewpoints of others, but it's still clinical evidence.

                              A doc could call this MS if they wanted to. They don't want to. So far it's been mild. But when my breathing is affected like it was this time and last spring, I get a little upset not having any other means to fight this than oral steroids. I worry that I could die, in a matter of minutes, alone. Or I could call an ambulance and they would have no idea what to do with me when they got here.

                              The whole thing kind of makes me feel like my life doesn't count in the big scheme of things. It feels like statistics, labels, insurance and money are all more important than what I do for my family, community and friends, or for myself and our quality of life.

                              They could treat this, what I have. I'm sure of it. The response to steroids is the telling thing. If I had money in my pocket, I'd pay for IVIG myself, because I have a feeling that would work for what I have, MS or not. But I don't have money, so I have to sit back and wait for someone else to make that call for me, and fight for the right to get treated. I have insurance, and it's expensive. Things shouldn't be this way. I'd much rather nip this in the bud than let it continue, but I'm powerless to do anything meaningful to fight it other than annoy the heck out of my doctors when it acts up again and beg for tests to prove to the insurance industry I have something that can be treated.

                              It will be so good to get past this point someday.
                              No, it reads 2 or more relapses and 2 lesions then no other evidence required.

                              I know this because it took me a while to get diagnosed too. I was initially diagnosed with just two lesions. But I had 2 lesions. They also wanted an LP to be sure. Mine was positive so luckily I got diagnosed. Please read it again.

                              This is a worldwide protocol you have to have lesions to be diagnosed these days. Used to before the protocol was in place people were diagnosed without it, but it led to false diagnoses, and people on meds that didn't need to be.

                              It is a clinical diagnosis in the sense that clinical evidence has to back up what the MRI says. You have to have neurological deficits on neurological exam that is consistent with MS and consistent with where the lesions are. MS is a localizing disease for the most part.

                              I know you are frustrated, I am just trying to get you to consider something else until something concrete comes up. As sick as you seem to be something would have shown by now. What are your neurologists telling you?
                              Disabled RN with MS for 14 years
                              SPMS EDSS 7.5 Wheelchair (but a racing one)
                              Tysabri

                              Comment


                                #30
                                @lusciousleaves

                                I absolutely empathize with you and can relate to so much of what you're expressing.

                                I'm equally frustrated with being sick, the health care system, lots of this stuff.

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

                                Comment

                                Working...
                                X