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    I guess Iíve come here to relate to others who might have gone through or are going through what I am going through. Iím convinced I have MS but at the moment my doctors arenít taking me very seriously because Iím not showing lesions on MRI. They are treating me for other things but donít think they are MS related.

    To start off with Iíll just list what I have been diagnosed with.

    Epileptiform discharges originally diagnosed as frontal lobe seizures

    bilateral trigeminal neuralgial

    balance issues Iím working with the PT with. Thatís all theyíve been able to find

    Iíve had what I believe was spasticity over a decade ago in all four limbs that lasted for 4 days. Iíve had periods of brain fog and severe fatigue that lasts about a week. About 4 years ago I had ataxia and went to the hospital did an MRI and it was clear. Doctor said it was stress. My memory progressively got worse during these years to where I forgot appointments and obligations. Two years ago I suspected I might have MS and sought help from a neuro. She did all sorts of tests on me and concluded I did not have MS. Some weeks later I developed vertigo, slurred speech, clumsiness, and blurred vision. I went back to the neuro and she thought I had a stroke. Did another MRI and it was clear. Long story short she suggested it could have been seizures or a TIA with no clear diagnosis.

    Right now Iím getting a second opinion from another neuro but itís pretty slow moving. Itís been a pretty frustrating journey so far. Has anyone been through something similar?

    #2
    Hi Crazyguy and welcome the the boards! Sounds like you have found answers for some conditions and are hanging by the limbs on other symptoms. I'm sorry to hear - it must be very frustrating.

    I have had vertigo and spasticity (still do), but nothing else that you describe. Oops, memory problems too, but that also comes with aging -lol.

    Good luck with your next neuro appt. Is this neuro an MS specialist? Hope you can get to the bottom of all your problems! MS is hard to diagnose, in that they rule out other conditions first.

    Please take care and let us know what your next appt. finds, if anything.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      To my knowledge he is not an MS specialist. Not even sure if my area has one close by. Heís done an EMG on my left leg, an EEG to check for seizures, and a sleep study for the same. My wife has told me my legs shake while Iím sleeping for about 5-7 seconds at a time. He seems to think that I have restless legs syndrome even though it went away when they started me on the seizure meds for the TN.

      I feel like Iím talking to a wall when I bring up MS because he wonít even entertain the possibility since Iím not showing lesions.

      The sleep study only only showed that I have sleep apnea. They want me to come in for a second study to test a cpap. The weird thing is that they didnít make me stop the seizure meds to do these tests.

      I cant help but feel Iím getting inadequate care. Iíve though even Iíve told them my previous psychiatrist suggested that I might have a neurologic disease.

      Comment


        #4
        Hi Crazyguy.

        I feel like Iím talking to a wall when I bring up MS because he wonít even entertain the possibility since Iím not showing lesions.
        The diagnostic criteria for Multiple Sclerosis relies heavily on MRI evidence and is rarely diagnosed anymore without that MRI evidence. There is no symptom(s) exclusive to this disease.

        Best wishes.
        Diagnosed 1984
        ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

        Comment


          #5
          Do they no longer use spinal taps to see if there is damage to the nerves in the spinal column?
          Wendy
          "There are signs everywhere...."
          "Life is wasted if it's not lived as an adventure."

          Comment


            #6
            Hi Wendy, it's nice to see you posting again

            Originally posted by TheBeans View Post
            Do they no longer use spinal taps to see if there is damage to the nerves in the spinal column?
            Yes, a Lumbar Puncture is still used and if positive can be a substitute for a lesion.
            https://www.nationalmssociety.org/Na...sdiagnosis.pdf
            Diagnosed 1984
            ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

            Comment


              #7
              Originally posted by Crazyguy View Post

              Right now Iím getting a second opinion from another neuro but itís pretty slow moving. Itís been a pretty frustrating journey so far. Has anyone been through something similar?
              Hi Guy, Sorry you have to go through this. My doctors told me I didn't have MS over and over again, and I was perfectly fine with that diagnosis. But in retrospect it was a mistake to listen to them. Keep trying until you find a doctor who will prove definitively that you do not have it, or otherwise.

              I hope you find some support here too. It's a great place.
              All the best, ~G

              Comment


                #8
                Originally posted by gargantua View Post
                Hi Guy, Sorry you have to go through this. My doctors told me I didn't have MS over and over again, and I was perfectly fine with that diagnosis. But in retrospect it was a mistake to listen to them. Keep trying until you find a doctor who will prove definitively that you do not have it, or otherwise.

                I hope you find some support here too. It's a great place.
                I'm always correcting my own posts.

                I didn't mean you should find another doctor who says you don't have MS. The right doctor would do a lot more be sure you don't, by doing more tests.

                Good luck CG!
                All the best, ~G

                Comment


                  #9
                  Originally posted by SNOOPY View Post


                  Yes, a Lumbar Puncture is still used and if positive can be a substitute for a lesion.

                  Thanks for the info. Unfortunately my doctors are standing firm on the no MS thing and havenít been able to convince them to give me a LP.

                  A friend suggested I try a Paleolithic diet while Iím in limbo. Has anyone had success with this?

                  Comment


                    #10
                    Originally posted by Crazyguy View Post
                    Thanks for the info. Unfortunately my doctors are standing firm on the no MS thing and havenít been able to convince them to give me a LP.
                    There is no single test, by it's self, that can give a diagnosis of MS. For this reason MS can be difficult to diagnose. A LP is usually one of the last tests to be given as it is quite invasive and a negative LP does not rule MS out.

                    As I said in an earlier post the diagnostic criteria relies heavily on MRI evidence and since you don't have lesions the medical thought is you don't have MS, so why do an invasive? (right or wrong). Lesions are a hallmark of this disease, however not all lesions are MS type lesions. Other conditions can cause lesions.

                    Here is a link to some of those other conditions that mimic MS:
                    https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

                    If you did not have a spine MRI done then I would suggest asking the Neurologist about doing one. MS is a disease of the Central Nervous System(CNS), which includes the brain, optic nerves, and spinal cord. Lesions can and do show up anywhere within the CNS. I would suggest the spine MRI before even doing a LP.
                    Diagnosed 1984
                    ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

                    Comment


                      #11
                      Originally posted by gargantua View Post
                      I'm always correcting my own posts.

                      I didn't mean you should find another doctor who says you don't have MS. The right doctor would do a lot more be sure you don't, by doing more tests.

                      Good luck CG!

                      Dont worry, I didnít take offense to your post. I know not showing lesions means itís a slim chance that I do have MS. The main reason I believe I do have it is that my mom has MS. I know it sounds crazy but I think Iíve had it since I was a kid.

                      Ive had a psychotic disorder since I was 18. Iíve read that early onset MS can cause seizures and normal exams as well as psychotic disorders. When I was 10 I used to get intense stomach pain that my GP couldnít figure out. In my teens I used to sleep all day and couldnt get out of bed. One time I thought I had pancreatitis cause of these pains and could even keep water down for a week. I guessing this could be from a lesion on my brain stem controlling my stomach. I also remember going camping with friends when I was 16 and they told me my legs shook in my sleep.

                      I agree that there are more tests they could have done like evoked potentials. This neuro Iím seeing is supposed to be a pretty good one. I just hope he can find something.

                      Comment


                        #12
                        Originally posted by SNOOPY View Post

                        I would suggest the spine MRI before even doing a LP.

                        They have done a cervical spine MRI which also showed nothing but a slipped disc. We havenít imaged my whole spine though. Donít know if that matters.

                        Ive read that lesions can sometimes be invisible on lower strength MRI machines, or maybe certain sequences. Does anyone know anything about this?

                        Comment


                          #13
                          Originally posted by Crazyguy View Post
                          They have done a cervical spine MRI which also showed nothing but a slipped disc. We havenít imaged my whole spine though. Donít know if that matters.

                          Ive read that lesions can sometimes be invisible on lower strength MRI machines, or maybe certain sequences. Does anyone know anything about this?
                          Hi Crazyguy

                          Here is some info from the NMSS website about MRI:

                          "The strength of the magnet used in the MRI machine is important to the quality of the images. Magnet strength is measured in Tesla (T).

                          Most conventional MRI machines are 1.5T or 3T.

                          Open MRIs are usually less than 1.5T and do not provide the best images for detecting MS activity, although they may be used when someone has difficulty tolerating a closed MRI machine.

                          MRI machines used for research purposes have much higher magnet strength."

                          https://www.nationalmssociety.org/Sy...-Diagnosis/MRI

                          Take Care
                          PPMS for 22 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #14
                            Originally posted by Crazyguy View Post
                            They have done a cervical spine MRI which also showed nothing but a slipped disc. We havenít imaged my whole spine though. Donít know if that matters.
                            A slipped disc is also know as a herniation. I would suggest you see a Orthopedic Spine Dr./Surgeon Herniated discs can cause neurological symptoms but is not related to MS, and should be evaluated by a Orthopedic Spine Dr./Surgeon.

                            We havenít imaged my whole spine though. Donít know if that matters.
                            It matters because you already have one herniated disc and there could be more spine problems. Without x-rays and/or MRIs you have no way of knowing.
                            Diagnosed 1984
                            ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

                            Comment


                              #15
                              Welcome!

                              My journey was fairly different. I wish the best for you in getting a clear dx.
                              ~ Faith
                              MSWorld Volunteer -- Moderator since JUN2012
                              (now a Mimibug)

                              Symptoms began in JAN02
                              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                              .

                              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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