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    A touch of MS

    I finally saw an MS specialist yesterday and left even more confused. All my tests up to this point are coming up clean except for MS.

    I was at a rheumatologist and he did 10 vials of blood that came back normal except for my sed rate which he said points to inflammation that could be caused by my neurologic problems. And that all my symptoms point to MS as discussed.

    So far my neurologist, my GP, and the rheumatologist have said MS.

    Yesterday the specialist at first was against the idea of MS because the LP was clean, but he hadn't looked at the MRI that was done. As we were waiting for those to be uploaded to him I told him what they found. 1 lesion that showed "the linear configuration was worrisome for a demylenating disease." Plus all my symptoms, burning, tingling, numbness, in my hands, feet, chin, face, legs. I did not get a chance to tell him about the dysphagia or the cognitive issues. Then he got the MRI and said yup that is definitely suspicious of MS.

    So he said that I probably have a "touch" of MS and that it is to early to start treatment, so he just wants to watch this for now. He did his exam and I failed the Romberg test both eyes open and closed, the tandem gait. He order another MRI, and a nerve conductor test. can a person have just a touch of MS?

    #2
    Originally posted by lucidmom View Post
    can a person have just a touch of MS?
    No.

    There is no such terminology used in the diagnosis of Multiple Sclerosis.

    Possible options a Neurologist may refer to for someone with possible MS is:
    Clinically Isolated Syndrome (CIS) or Radiologically Isolated Syndrome (RIS).
    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
      Originally posted by lucidmom View Post
      So he said that I probably have a "touch" of MS and that it is to early to start treatment, so he just wants to watch this for now.
      Hi lucidmom:

      It sounds like your MS specialist meant that you have clinically isolated syndrome (CIS), "early" MS or "mild" MS and was trying to explain it to you in humanistic terms rather than medical terms he thought might scare you.

      Some doctors are very conservative and some are quite aggressive about treating health conditions. It sounds like this doctor is conservative.

      It's good that he ordered another MRI and nerve conduction tests, and it might be that he's waiting for more information before deciding what to say about MS.

      But an important factor is how long he intends to "watch" you and how far into the future the tests are scheduled.

      Since you already have an MRI and symptoms that are suspicious for MS, your neuro will have to decide whether that "touch" of MS means CIS, MS or not MS. He'll have to decide pretty quickly, based on the McDonald criteria, whether your MRI and symptoms demonstrate dissemination in time and dissemination in space necessary for a diagnosis. And, because he didn't use medical terminology or terminology that's easier to understand, he'll have to explain what his vague term meant.

      One interesting thing here is that MS experts agree that the earlier treatment for MS is started, the better the outcome is. As a result of that consensus, some MS treatment medications have been approved to use in CIS in order to start treatment as early as possible.

      So it's also interesting to know how long an MS specialist will delay a diagnosis of CIS or MS, presuming that s/he also follows the expert agreement that treatment should be started as soon as possible.

      You might have to pin your doctor down to make him specify exactly what he's talking about.

      Comment


        #4
        Thanks for the replies, it means a lot.

        I asked if he meant CIS and he said no. That was something more like an episode of blindness, double or blurred vision, that lasts for weeks. So apparently the burning, tingling, poor balance and numbness for 3 months doesn't count.

        He did say that with it being this hard to diagnose is a good thing because the outcome is better, than someone that is easier. He did a prick test and found several places on my hands, feet and face that were less sensitive than other places. He also said that sometimes there is no explaination for symptoms like burning, tingling and numbness.

        I told him that recently I've been having more burning on the left side, especially my leg, a sort of band around my calf that feels like I'm wearing a sock and it burns terribly and the gabapentin isn't working on it.

        I really dont think I was able to get across to him how much burning and tingling there is. He asked if it moves around, and I told him that it's in different places, feet, hands, fingers, chin, cheek, legs. His reply was "that is not typical of MS burning to move around to different parts, but not everyone is the same." I don't think he understood that it's in all of those places, every time, just not all at the same time. Like I said I left feeling more confused than anything.

        My MRI is scheduled for next Friday, and my follow up with the specialist is July 29th, when they do the nerve test. I saw the post about the new testing standards for MRIs and sent the link to my regular neurologist to ask how can I make sure my next one follows the new standards. We will see.

        Comment


          #5
          Originally posted by lucidmom View Post

          His reply was "that is not typical of MS burning to move around to different parts, but not everyone is the same."
          I guess my burning sensations aren't typical, either.

          Not sure what to think of your MS Specialist, other than he doesn't want to scare you and wants more information before making a diagnosis. That is a good thing, if you don't have CIS. You don't want to begin treatment with a diseases modifying therapy if you don't have MS. If it is, then it's recommended.

          Here is info about CIS and the McDonald criteria:

          http://www.nationalmssociety.org/Sym...Syndrome-(CIS)

          http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

          Good luck with your MRI Friday.and your nerve conduction test in July. Please keep us updated.
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment


            #6
            2nd MRI

            Second MRI results: 2 more tiny foci in front left side, and one in Pons. Talk to the neuro tomorrow. Sigh!!

            Comment


              #7
              Another neuro

              My awesome, amazing neuro is moving next week and I am not happy. He referred me to yet another one a little closer than the specialist I saw and I get started with her next week.

              She is a specialist and got her training from the Texas MS University. I had originally wanted to see a different doctor in her office who reviewed my chart and said that she does the work up to get to the diagnosis but once they have that diagnosis she sends them to the specialist. So she thinks the specialist will get me the help I need.

              My new MRI showed that I had more lesions, that were there for the first one, but they were more visible this time than before. The neuro and I talked about the nerve conduction test and I decided to keep the appointment based on his opinion.

              He added Cymbalta to my Gabapentin to help and it's not working either. He said my body is gobbling up the Gabapentin to fast (3000 mg daily) and he would like to get me started on an immune suppression drug but because he's moving and can't monitor me on it, and the next neuro might feel it's not necessary and take me off, he didn't want to put me through that.

              So so I get to test out another neuro which is funny because I will be moving in the next several months and need to start with another new one once I do. But I can't go without someone monitoring the meds to do an adjustment if needed.

              Comment


                #8
                Hello lucidmom,

                he would like to get me started on an immune suppression drug
                Did you receive a diagnosis of MS? If so I don't understand why your Neurologist would start you on a immune suppressive drug They are usually not used as a first line medication but are used, sometimes, in the treatment of MS. These are different than the Disease Modifying Therapies (immune modulating).

                Information about immune suppressive medications:

                Mitoxantrone (Novantrone) is a Food and Drug Administration (FDA) approved immunosuppressant used in multiple sclerosis. Other immunosuppressants, such as cyclophosphamide (Cytoxan), azathioprine (Imuran), or methotrexate (Rheumatrex, Trexall), are prescribed primarily in specialized centers; but their efficacy in multiple sclerosis remains controversial and they are not FDA approved for this use. These drugs should not substitute for the immune-modulating drugs as first-line agents in newly diagnosed relapsing remitting multiple sclerosis (RRMS). Some physicians find a role for Cytoxan, Imuran, and methotrexate as last-resort measures for patients who have not responded to the FDA approved drugs or that have a fulminant (malignant) course of multiple sclerosis that may be life threatening.
                http://www.emedicinehealth.com/under...s/page5_em.htm
                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


                  #9
                  Hi lucidmom:

                  It sounds like your "awesome, amazing" neuro is prone to using sloppy, misleading terminology. It started with a "touch" of MS, which was so confusing you had to post on a forum to try to figure out what he was talking about. As was pointed out, there is no such thing as a "touch" of MS.

                  Next, you haven't said specifically that you have been diagnosed with MS. But despite not having a diagnosis, you said your neuro wanted to start you on a medication. It's not clear just what's going on.

                  Other sloppy, misleading terminology your neuro used when referring to MS is "immune suppression drug." That's not what MS disease treatment drugs are called. "Immune suppression" means immunosuppression, and that isn't what's usually being referred to with MS drugs.

                  When the term "immunosuppressant" is used, it refers to drugs like azathioprine, cyclosporine, methotrexate, mycophenolate, tacrolimus, sirolimus and cyclophosphamide, which are drugs used in treating lupus, rheumatoid arthritis, neuromyelitis optica and other highly inflammatory autoimmune conditions, and for the prevention of organ rejection after a transplant. These drugs are rarely used in MS.

                  Tysabri, Gilenya, Tecfidera and Aubagio are not included in the common usage of "immunosuppressant" even though they may have immunosuppressant properties. So calling them "immune suppressant" drugs and including them in the class of immunosuppressants is wrong, and your neurologist was wrong in leading you down that path.

                  if you start referring to the MS treatment drugs as "immune suppressant" drugs, your new neurologist is going to wonder about how you got such a strange idea, and may even start to question your reliability about other things you're saying.

                  So my tip of the day for you is to never again use the term "immune suppression" when referring to the MS disease treatment drugs. If the time comes that the regular MS disease-modifying drugs aren't effective for you and you get put on a drug included in the class of immunosuppressants, you'll know, and then you can properly use the term.

                  I hope your new neurologist is better at using terminology correctly and communicating more clearly. You've already had too much miscommunication from your last neuro.

                  Comment


                    #10
                    Sorry

                    I'm so sorry for the misunderstanding. My "awesome, amazing neuro," is NOT the one that used the term "a touch of MS". The one that said that was a specialist I found through the National MS website, he also said that at this point he would rather "watch me for awhile, instead of putting me on a disease modifying drug because they are expensive and hard on the body."

                    MY awesome neuro said I have mild MS, and I have been in such pain for the last 4 months without relief that a immunosuppressant drug may help with that. Not as a treatment for MS.

                    So it was me using the wrong terminology, not my neuro. That is my fault. But thank you both for looking out for my well being and wanting me to get better care. I appreciate that.

                    Comment


                      #11
                      my dr was very adamant that there is no such thing as a `touch of`, you either have it or you do not.
                      hunterd/HuntOP/Dave
                      volunteer
                      MS World
                      hunterd@msworld.org
                      PPMS DX 2001

                      "ADAPT AND OVERCOME" - MY COUSIN

                      Comment


                        #12
                        I think you have a long story and you have to decide if the doctor that is treating you actually recognizes your illness. I believe that an MS specialist will be able to put a 'definite' on a diagnosis of MS. There is no such thing as 'a touch of MS' ! i would keep searching for a 'definite' disgnosis and start treatments, asap.

                        Comment


                          #13
                          Hello lucidmom,

                          Originally posted by lucidmom View Post
                          I have been in such pain for the last 4 months without relief that a immunosuppressant drug may help with that. Not as a treatment for MS.
                          Did your neuro mentioned what immunosuppressant he wants to put you on? Steroids, maybe?

                          If you are dealing with MS pain isn't usually treated with immunosuppressant's. The 2 links below will give you an idea about the different pain those of us with MS can experience and the treatments used.

                          http://www.nationalmssociety.org/Nat...asic-Facts.pdf

                          http://www.nationalmssociety.org/Nat...aloni-Pain.pdf

                          MY awesome neuro said I have mild MS
                          The above quote sets off red flags for me. Was "mild MS" an official diagnosis?

                          Mild MS is determined after many years of following a patient and even at that mild can change to not so mild without warning.

                          Honestly, I have a concern about both the Neurologists you have seen
                          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


                            #14
                            Originally posted by lucidmom View Post
                            MY awesome neuro said I have mild MS, and I have been in such pain for the last 4 months without relief that a immunosuppressant drug may help with that. Not as a treatment for MS.
                            Well, lucidmom, I'm still concerned about you because this part from your post doesn't make sense, either.

                            First, as has been pointed out, MS is only mild until it isn't. And since the prevailing wisdom is that, the sooner an MS DMD is started, the better the outcome, why hasn't your awesome neuro put you on a DMD? Why has your neuro referred you to MS specialists (who apparently aren't so up on MS, either)? Does he actually treat anyone for MS?

                            Next, immunosuppressants aren't used to treat pain. They're used to treat an underlying inflammatory condition, and you haven't specified what inflammatory condition -- that isn't MS -- your doctor thinks you have. And why would your neuro be treating you for something that isn't a neurological condition?

                            With so much not making sense, it might be a good thing that your neuro decided not to prescribe something he couldn't follow you for. Your next neuro might not have understood what he did, and that wouldn't be a good thing.

                            Maybe you could clear this up? There's too much information missing for this unconventional approach to make any sense.

                            Comment


                              #15
                              I can answer a few of your questions that I understand. My neuro specializes in sleep disorders BUT he does treat patients with MS. He just is not a specialist, plus he is moving and won't be able to continue. So he referred me to an "MS Specialist" in a town that is quite a distance from here.

                              That specialist said "you have a touch of MS. It's so mild I would rather watch you for now than start you on treatment because it's expensive and can be hard on your body." This "specialist" was recommended by the National MS Society website. As has been pointed out there is no such thing as "a touch of MS", so I'm not sure if I want to go back to him, but he scheduled a nerve conduction test for the end of this month.

                              I went back to my neuro and he explained that it was mild MS. The rheumatologist report came back "no inflammatory auto immune disease like lupus, rheumatoid arthritis or the like. Symptoms are consistent with MS as discussed with patient."

                              As as for starting a DMD, at first my neuro was hesitant because he wanted to make absolutely sure it was MS before starting one. When I had my follow up after the specialist and the rheumatologist he again was hesitant because he can't follow up with me because he is moving.

                              I am hesitant because it is just "mild" at this point and I would like to go more with natural treatment such as diet and supplements. My neuro said that while that won't hurt me, he couldn't guarantee it would work.

                              My flare up has continued or caused damage resulting in pain, now for 4 months without letup so the burning has been intense. I believe my neuro was thinking that an immunosuppressive drug like a steroid would shorten the flare up, or stop it. Therefore stopping my pain, as the gabapentin and Cymbalta aren't working, not to use it to treat the pain. But since he didn't do it, I didn't ask anymore questions.

                              Because he is moving, he had to refer me to another neuro that I can see more often. This one studied at the University of Texas MS Center, and specializes in MS.

                              I hope this is more clear than my other posts. Sometimes it's hard to get things straight in my brain, ask my kids they have some good stories for my scattered brain.
                              again, thank you for looking out for my well being, it is appreciated".

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