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    I am 1 of the 5% without lesions

    I am 1 of the 5% of people with MS without any lesions (or at least they can't detect any. I have 95% of all of the MS symptoms and they have ruled out every other neurological disorder they can think of. Leave it to me to be original but it is also the most frustrating thing to have every specialist shrug their shoulders. I was originally diagnosed in 1997. Does anyone have a similar story?

    #2
    Hello Christine_G,

    Although it is possible to be diagnosed without lesions it's not very common and the longer a person goes without lesions the less likely this disease becomes.

    I was diagnosed without lesions, however, I had a Lumbar Puncture that came up positive for O-Bands as well as being in the middle of a severe exacerbation. Any doubt about my diagnosis was removed one year later when I had another severe exacerbation. I also have MRI evidence that the original diagnosis was correct.

    I have 95% of all of the MS symptoms
    There are no symptoms unique to MS. It is virtually impossible to have 95% of all the symptoms that this disease can cause. There are many symptoms this disease can cause which are not even listed as common.

    Do you still carry a MS diagnosis? Do you go in for regular MRIs (at least once a year)? Did you have other tests that would indicate you have MS? After 15 years without lesions the MS diagnosis would be questionable especially if there were no other tests or exacerbations that might indicate MS.

    I do not know your medical history nor the basis on which you were diagnosed, it's just unusual after 15 years to have not shown any lesions. This disease is called Multiple (many) Sclerosis (scarring) for a reason
    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


      #3
      Wow, one thing I have really liked about these forums is all the support you can find here but Snoopy I think your reply sounds negative and superior. I sure hope there are some others out there that can share some support and experience with Christine.
      M.
      A question that sometimes drives me hazy: am I or are the others crazy?
      Albert Einstein

      Comment


        #4
        Hi Christine:

        Welcome! I have to second everything poster Snoopy said. i appreciate that you've come here to talk about how unusual your case is. But with the little you've told us, your story has to be met with some healthy skepticism. It isn't that we don't believe you, it's that we don't believe what you've been told and are basing your beliefs on, because it pushes the bounds of credibility. Your description of how many "symptoms of MS" you have is another sign that you've been told or have read things that just aren't realistic.

        The critical concept here is that 5% of people with MS are diagnosed without lesions, not that 5% of people with MS don't have -- or never develop -- lesions. This is what the National Multiple Sclersosis Society says:

        "About 5% of people who are confirmed to have MS do not initially [emphasis mine] have brain lesions on MRI. However, the longer a person goes without brain or spinal cord lesions on MRI, the more important it becomes to look for other possible diagnoses."

        That first sentence differs from what you've told us about yourself. It's true that MS is, to some degree, a diagnosis of exclusion. That doesn't mean that it's a dumping ground diagnosis for any neurological condition that doctors can't figure out. The NMSS description says "5% of people who have been confirmed to have MS..." So your description that you were diagnosed with MS because your doctors "ruled out every other neurological disorder they can think of" and that every specialist just shrugged their shoulders about a diagnosis doesn't align with the NMSS specification that the percentage applies to people who have been confirmed to have MS. Your description sounds like your diagnosis was a dumping ground without confirmation. Can you tell us what criteria were used to confirm your diagnosis?

        The second sentence of the NMSS description is also important. That 5% don't initially have brain lesions at the time of diagnosis. That means they do develop them later. I have no doubt that you were initially diagnosed without lesions in 1997. But as poster Snoopy pointed out, MS is called MS for a reason. The diagnostic hallmark is multiple scleroses. It's highly questionable that a case of MS would show no lesions 15 years later.

        IF anyone else were to say that they've had a confirmed diagnosis of MS for 10 or 15 or 20 years without ever showing lesions on MRI, I would say the same thing to them.

        So again, it's not that we don't believe you. I believe that you believe everything you've told us. It's just that those of us who have studied MS in depth and have been around the block a few times ourselves recognize that what you've told us is so unusual, such an outlier, that it shouldn't be believed without being confirmed by experts in the field of MS. So if you've been through that level of confirmation, I offer my apologies, and you can ignore everything I've said. It's just that it doesn't sound like you have. If your best explanation is that your doctors just shrugged their shoulders and stuck a label on you 15 years ago, then your case doesn't have the required confirmation, and maybe you should also be looking at it with a healthy dose of skepticism.

        Once more, I appreciate that you came here looking for validation and camaraderie and not questioning. But when alarm bells go off for more than one of us reading your story, we're concerned about you. It would be a disservice to you for us not to speak up about it.

        Is there more you'd like to tell us about how you came to be in your situation? There are posters here who have been through diagnoses and misdiagnoses, and who have experiences and perspective they can share with you.

        Comment


          #5
          I am on the opposite end of the spectrum.

          Old MRIs done years before the MS question was raised showed legions of classic Dawson's Fingers, and IGNORED.

          My LP and EVP also backed up my MS dx.

          Gomer Sir Falls-a-lot

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            #6
            I don't think I have any either. My diagnosis was made from the spinal tap and o bands. etc.

            Comment


              #7
              The 5% I will say is truly hard to truly get diagnosed. It has to be the perfect storm. I've been in this sort of weird twilight of limboland/half-diagnosis land for years now.

              My neurologists (after testing and retesting) determine that I have to be in that 5% of people with MS who don't show lesions. But...they are not sure enough to pull the official diagnosis switch. After three full flares, including Optic Neuritis...you think it would be easier, but we rely on technology a lot right now for diagnosing.

              From the research I've done, it isn't that we don't have lesions, it is that our damage is more scattered. Open us up and you would see the damage (just as if you were to look at someone else's brain and see more lesions than usually shows up on MRI's). Sorry, but you can't open me up right now.

              It is my opinion (just mine), that we really know nothing about MS and how it works. This relying on technology constantly (I can't tell you how many MRI's I've had in the last two years) when obviously there is more at work than just lesions is not helping us.

              It is our responsibility to make sure we don't have something else...to rule out everything else. But it is also important to make sure the 5% gets taken care of. Either the 5% really is the 5% and they need to figure out why they show no lesions. Or they have a different, new disease.

              There are those out there...if you read wheelchair kamikaze, you'll know what I mean.

              Now- not everyone who is in limboland or doesn't show lesions for years is going to fit into this 5% or into this rare unknown world, obviously. But I think it is less rare than doctors say. Which is why we need to get our heads together and start figuring things out.
              Erin

              doing the Limbo since 2005

              Comment


                #8
                www.wheelchairkamikaze.com is highly recommended!

                (Marc is an old and much-admired friend.)

                Comment


                  #9
                  I've always been told there needs to be lesions or evidence of prior lesions. I was diagnosed based on abnormal Vision field test, NCV test, MRI showed what may have been lesions on optic nerve,time and space of relapses,clinical findings. Plus most other test were negative.It took years for me to get diagnoses and by that time the damage was done.
                  Even with the diagnoses I questioned it because to few lesions . Went to other neurologist for second opinions. In the end was told by my neurologist as one ages with MS the lesions get smaller and harder to spot on the MRI. Many lesions can be missed. Its hard to diagnose MS with some people.
                  Christine~ have you had any second opinions just in case. I had to make sure in my case that it really was MS before treating it . The DMD's for MS can be harmful if one doesn't have the disease.
                  I wish you all the best.
                  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


                    #10
                    Originally posted by Sequoia View Post
                    www.wheelchairkamikaze.com is highly recommended!

                    (Marc is an old and much-admired friend.)
                    Sequoia..good thought directing her to Marc's blog.

                    Also my very favorite MS blog.

                    Christine, make sure you look at Marc's side bar, down on the left side of his blog, and read his post on The Misdiagnosis of MS. He has a very real case of not meeting the criteria for MS, yet being diagnosed, undiagnosed, and diagnosed again with MS because they can't find anything to call what he has other than MS. And he has been to specialists in many renowned centers.

                    His MRIs have remained unchanged for years (I think he has one lesion) and yet his diseases continues to progress.

                    You'll find lots of good stuff on his blog that challenges and informs the "standard" things we hear about MS.

                    Comment


                      #11
                      Im currently in limbo also. But when i started this process i knew it would b difficult my maternal aunt and first cousin have ms. And believe my mom soes as wel to some degree. I think ms is one of those diseases. That can make some shrug there shoulders because of the complication of diagnosis. And i do believ in my heart that low vitamin d. And ms and fibromyalgia are linked. My cousin with ms has a sister with similar symptoms but with tests back negative. There givin her a frbro diagnosis. Fibro is the dx. Without any evidence. And me my mom her sister and her two daughters all had extremely low levels of vitamin d. Under 10 That we have all treated. Food for thought. I am not saying im right but i wonder. Maybe in the beginning This is how it starts. Who knows. I dont think people want ms or turn to it but after exhausting evry possibility. And walking around dragging your numb leg slurring your words. You would like to think there is a cause for it. And ms. Is known for the unexpected amd thats y people use it as a critch so to speak. When there undiagnosed of course. Indont have a dx but my aunt says she was like me. And her daughter has a dx and exhibits different symPtoms

                      Comment


                        #12
                        YOU ARE NOT ALONE!

                        Originally posted by Christine_G View Post
                        I am 1 of the 5% of people with MS without any lesions (or at least they can't detect any. I have 95% of all of the MS symptoms and they have ruled out every other neurological disorder they can think of. Leave it to me to be original but it is also the most frustrating thing to have every specialist shrug their shoulders. I was originally diagnosed in 1997. Does anyone have a similar story?
                        christine, i'm so sorry that you came here for encouragement and are given bunch of facts that i'm sure you've heard or read from drs.
                        MSW is about 'Patients HelpingPatients'
                        i, too, have no lesions. and reading some of the responses you got depressed me.
                        oh! wheelchairkamikazi is great!!!
                        thanks to all who were encouraging about this frustrating part of MS.

                        i was dxd in 2002 by Dr. Samuel Hunter, a well reknown neuro. He was one of the speakers at Ecitrims. He in my opinion the best MS dr. there is.
                        I could go on and on about him, but this is about us and no lesions. he thought there were very faint lesions at the base of my skull which would be in agreement with my sxs. MRIs after that haven't shown them for him or any other neuros.
                        since then i've moved and had to change drs. for ins. reasons.

                        i saw the head of a MS clinic here and she told me that i did not have MS. that it was all in my head and to go to a psychiatrist.
                        all of this she knew in 15 mins. of watching me walk, poking, touch the fingers etc AND seeing no lesions on my MRI.
                        we had a difference of opinion . so she contacted Dr. Hunter and he insisted that i still have MS and that he would gladly treat me as a patient again. (unfortunately that would be about a 6 hr drive )

                        i, too have read that some MSrs don't have lesions (or at least ones that show up on our MRI equipment now).

                        i know drs. make mistakes. but when there's no other answers (you said they ruled out everything else. i, too, have had more tests and drs. than i can count or remember)
                        and you get the dx of MS it's a relief. and at least you get treated for your sxs, instead of being told it's in your head and go to a shrink!!

                        concentrate on the positive and do the best you can to live a healthy life- eat right, exercise, destress, etc.

                        i pray that all goes well with you. you are not alone- it is 5% of us out here. some of us may not speak up for fear of ridicule.
                        feel free to email me, it's in my profile (click on my name at top of this 'poohb3ar' and it will take you to my contact info. i would be glad to talk to you more about this if you want.

                        take care and God bless!


                        I had a new dr. last yr. tell me i didn't have MS because she didn't see any lesions.
                        "All things are possible for those who believe." Jesus

                        Comment


                          #13
                          i started to have symtoms in my teens maybe if i'd be mri'd then my lesions would have shown up bright . however i taken seriously by doctors until i was 42 . my first mri showed inconclusive findings. later found out that it showed small lesions and signs of old lesions . not really sure what to call them but they were mostly in my optical nerve.
                          few years later ... well 3 more years i found a good doctor who thought that it may be ms . He ran the mri and again it was inconclusive lol similar findings as before yet disregarded by radiologist. had a vision field test (abnormal findings). Later diagnosed with optical neuritis and trignemental neuralgia. then sent to a neuro. had emg/ncv done and found moderate sensory nerve damage.

                          my neuro said that lesions can be very small and not show up on mri's. after so many year people can get few lesions and the old one shrink showing up a black holes . or something like that ,i'm no expert on ms by any means.

                          what i'm getting at is sometime neuro's just have to dig deeper for proof of ms . the mri is just one tool. also in my case lesions were found in my spine. this happened years after my original symptoms.

                          i was told for at least 6 years before my diagnoses no lesions no ms. only to find that yes they were there just very small.

                          imo for what its worth . ms = lesions but some may be very tiny
                          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


                            #14
                            Christine_G,
                            There is a possibility that you do or do not have this 'fab' disease. I don't know what tests you have done, but I know there are MANY that pertain to the diagnosis. And never rule out second and third opinions.

                            But, this where I have to push my opinion on you. Forget what the medical guys are saying and figure out what you can do for yourself. Don't smoke ! Begin a healthy diet regimen. Get /keep your weight under control. Get your vitamin D levels to between 50ng/mL to 80ng/mL. I'll bet that they aren't bright now. Get your food allergies / sensitivities checked. Avoid stuff that can add stress to your life. All these kinds of things are like 'straws on the camels' back'. It can't hurt to try. And this stuff is about YOU taking charge. Good luck

                            Comment


                              #15
                              Christine's post was from March - only one post. Oddly it was found and bumped up, most likely through a search. Sadly, she probably got scared off due to being ridiculed or given the WRONG information, as Pooh said. If I'm wrong, hopefully she'll be back to tell me, but I doubt it.

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