No announcement yet.

Relapse, but MRI says no?

  • Filter
  • Time
  • Show
Clear All
new posts

    Relapse, but MRI says no?

    I was diagnosed with RRMS is 2010, so we know I have MS.

    13 days ago, I was leaning to grab something on the floor of my car, and it felt like my hips and legs were vibrating down through my legs (primarily my left leg) down to my feet. Not an electric shock, exactly, but a vibration that lasted a few seconds and then petered out. I could reproduce this sensation at will by bending my chin to my chest. I bend, it lasts for a few seconds, then slowly stops until I lift my head and bend again.

    A couple of days later, I noticed that I didn't have to work as hard to get the sensation--my neck didn't have to bend as much to produce it, and the effects were stronger when it happened. I called the neuro, and six days later had an MRI of my c-spine (I can usually get in more quickly, but the imaging centers were backed up).

    I'm still having the same issue to this day, and while it's no longer getting worse, I accidentally trigger it dozens of times a day. I can live with it, but it's annoying, and absolutely new to me. It sounds like Lhermitte's sign, but I'm not a doctor, so won't call it with certainty.

    MRI results came back; no new damage on my cervical cord, so it's not a relapse, per the neuro. I have an appointment with him in two weeks (I'm also on the cancellation list) because I want an explanation, from him, of how I can have a completely new and reproducible symptom that is still fully present after ten days (and may have been there longer for all I know), and yet it not be a relapse.

    What do you guys think? Can the MRI have missed something? Could it be something else entirely? I don't see how this could be a pseudoexacerbation, since it's a completely new symptom and I'm on day 13 of having it with no illness, fever, etc. It's a real symptom, and something must be causing it. I don't want steroids, but am unsure of how to proceed with my neuro. In almost every way he's a great, responsive doctor, but he is absolutely black and white when it comes to MRIs, and this concerns me.

    If he is treating the MRI instead of you, you may want to have a conversation with him.

    In view of the MRI showing no treatable change; but you do have treatable issues.

    Even without M.S. most docs would go ahead and treat that with steroids. There must be some sort of inflammation or 'irritation' that is causing this.

    It seems he is being conservative with steroids due to long term use and those side-effects. However, if you feel it is getting worse or not going away, I doubt anyone can do more than you are, going in to see him. Surely, that will result in a proper EXAMINATION that will render useful information and help him decide to treat you.

    On the flip side; Have you done anything that may have exacerbated anything? Anything remotely causing a 'jerking' or sudden whiplash type of action with your neck, lifted anything that use to be light, that now seems heavy.

    Many things can cause spinal issues. However, that 'vibrating' is something I get, as well. Usually when extremely tired and I overdo it. It is extremely annoying.

    Whether you have a flare or not, something isn't right. With Lhermittes, having him examine you first hand is the best way to get results.

    Have you been seeing this Dr. for very long? Usually, an M.D. gets to know their patients well enough to know when someone is asking for a medicine they seldom ask for...something is wrong.

    Sure hope there is a cancellation today and you get in to see your M.D. fed


      There is not always a correlation between lesions and the disease. Maybe it is a lesion in your brain. Or the thoracic part of your spinal cord.

      I don't know what you mean about your neuro being "black and white",,, about MRI's. There is very little about M.S. that is black and white.

      It could be many things. I hope the Dr. can be more helpful than I am. Good Luck!!!


        MRI's do not tell the whole story

        Hello there Alicious. I am sorry but MRI's and lesions do not tell the whole story about MS. People can and do progress without getting new lesions and without enhanced lesions. You can have unchanged MRI's as far as lesions go for quite a long period like I have and many others, but still progress. My Neurologist treats symptoms at this point as my lesions are no longer telling us anything.

        There are things going on the MRI does not show. For a doctor to be black and white about MRI's does not sound like a very good MS doctor. There can be grey matter damages, axonal damage, degenerative damage, black hole damage, lesions on top of the old lesions, silent lesions, atrophy etc. etc. etc. Some of these like black hole damage and atrophy are visible on MRI but the rest are not always. Plus there is the added bonus that old inactive lesions can cause symptoms due to their degeneration.

        I found a very good article that talks about all of this. I have researched enough about it to know its true. I tried to post the link but am not allowed to yet. I have been a member here for a long time but haven't posted in quite a while. The article is on medhelp. org it says tags health page 7687 Multiple-Sclerosis lesions-lesions-lesions.

        Hope this helps.
        LDN'er since 2007


          Originally posted by Fed Up View Post
          There must be some sort of inflammation or 'irritation' that is causing this.
          Right? And if it's not MS, then we need to figure out what it is, because it's real, and it's really annoying. I am developing cataracts due to steroid use, and in this case haven't even asked for them. His assistant simply told me the MRI showed no changes, so there is no relapse. GAH. Thank you for helping me think through this. I know the neuro knows a heck of a lot more than I do, but I know my body, and this is not normal activity, and I won't ignore it.
          Originally posted by Fed Up View Post
          Have you been seeing this Dr. for very long? Usually, an M.D. gets to know their patients well enough to know when someone is asking for a medicine they seldom ask for...something is wrong.
          Three years next month; he's the one who diagnosed me, in fact, in record time. Even he says I rarely call with issues. I know he believes that I am having the issue, but categorically saying that its not on the MRI so it's not new damage doesn't sit well with me.

          golfore, what I mean about black and white is that if a lesion is seen, it's a relapse. If not, it's not a relapse. In the past he has refused to even think about the possibility that there is damage the MRI didn't catch. The last time, it was similar to a previous flare, only far worse. This time, it's such a completely new symptom that I need him to tell me precisely what is going on, because "not on the MRI" when we know MRIs are imperfect tests just won't cut it with me. But, I want to give him the opportunity to explain face to face his perspective before I seek out a new doctor.

          lovetherams, thank you! I will look up that article, and I appreciate your perspective on this. This is what I need to hear; I know what my body is doing, and I need an explanation for it, even if it's not on the MRI.

          You guys are awesome!


            I think it's also helpful to remember that the definition of a relapse is new or worsening symptoms that last at least 24 hours, not new lesions on an MRI. Add to that the fact that MRI's don't show everything and spinal cord lesions are sometimes especially hard to pick up. Plus the old saying: treat the patient not the MRI.

            Isn't one of the most fundamental things about MS knowing when a person has a flare? I have to wonder about a neuro who seems out of step with other MS professionals on something so basic as what a flare is.


              I'm really hoping for some clarification on that one at my appointment, MSer102, because I completely agree. It's nice to hear I'm not alone on this; your support is very helpful to my resolve.


                My left leg is now noticeably weaker than it should be. I'm walking fine, but it's not right, and that feeling has been growing since Sunday (it's now Wednesday). I have an appointment with the neuro tomorrow, and I guess we'll be having our chat then. I think I now know what I need from a doctor, so we'll see how it goes.

                My husband, who is far more diplomatic than I am, is coming with me to make sure everything that needs saying is said, so here goes....


                  Do you have a GP? Because we have M.S., we think that all our health problems are a result of M.S. Until 10 months I had only minor problems with my M.S. Yet, if you were to read my MRI results you would expect to see someone severely disabled.

                  Statements like, "T2 lesions: Too confluent to count". "The lesions are predominantly in the periventricular and deep cerebral white matter, but there are juxtacortical
                  and some cortical lesions as well as a few brain stem and cerebellar lesions". "T1 "black holes": Approximately 6 slightly hypointense lesion"

                  My point being, M.S. is not an exact science. I have a great GP that I rely on more than my neuro. After getting a shoulder shrug from my neuro every time I asked "is this caused by my M.S."?,,,,,,, I eventually stopped asking questions every time I had a new ache or pain.

                  Our M.S. is mostly out of our and our neuros control. Good luck, I admire you determination.


                    I do have a GP, and I try hard to figure out if something is likely MS or not. Like last week, I had a tight calf for a few days on my "normal" leg. It could be MS, but my money is on having pulled it, so without reason to think otherwise, I'm going with coincidental muscle pull.

                    Today the neuro told me it was Lhermitte's and that it was a pseudoexacerbation because the MRI was clean. I'll be honest, I wanted to swear at him. He also wants an MRI of my T-spine and brain next week to check elsewhere for lesions, which I can see, but am deciding if I will do or not.

                    I came home and made an appointment with a highly recommended clinic in a few weeks and hope to get on sooner on a cancellation. I don't need treatment for this flare, but I do need it to be documented as one, and it's time to move on to a new doctor and fresh eyes. If the neuro had suggested other reasons for the Lhermitte's, that would make sense, but the leap to pseudoexacerbation just feels wrong to me. Or, rather, feels like I need a second opinion.