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    Waiting is worrying

    Hello all! I’m very new to this and have so many questions. I’ll try to be concise, but I’d appreciate ANY advice or guidance at this time.

    My leg went numb a little over a month ago. I just woke up with a numb leg. Several days later, the opposite foot went numb. I’ve had an ultrasound, lots of labs, MRI of lower back (all normal), CT of brain (which showed mild cerebellar tonsillar ectopia) but they said that it was normal, then finally an MRI of my T-spine revealed a lesion. Neuro said it was most likely Transverse Myelitis and I took five days of IVSM. He also ordered a brain MRI and lumbar puncture. Brain MRI was read by two different radiologists and their opinions differed a little— one said 4 active lesions, the other said 3 total (two inactive lesions and one active). The CSF study showed 2 oligoclonal bands present. However, the doc said the CSF was inconclusive because there are usually 3 bands present for MS diagnosis. Everything I’ve read says two.

    Im so confused. If this isn’t MS, what else would cause the bands and the brain lesions?

    My symptoms are the same, if not a bit worse. I’m truly exhausted. I have an appointment next month with Cleveland Clinic, even though it’s about 7 hours away.

    Thanks for reading! I’d appreciate any advice.
    DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

    "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
    - 2 Corinthians 4:16

    #2
    I wish I could offer more advice but all I can do is empathize. I'm still in limbo (undiagnosed) and the waiting stinks! I have some more tests coming up this week. And then I'll have to wait for results. I've been going through this for almost 3 years. Hopefully you will find answers faster than I am.

    MS is difficult to diagnose. And I get the feeling the doctors are hesitant to diagnose unless they are 99% certain.

    Comment


      #3
      Hi smalltowngirl,

      Originally posted by smalltowngirl View Post
      Im so confused. If this isn’t MS, what else would cause the bands and the brain lesions?
      Many things can cause brain lesions and a Lumbar Puncture is used in the diagnostic process for many conditions. If you scroll down through this link it does list conditions in which the Lumbar Puncture is used for diagnostic purposes. it also shows what is normal and abnormal for results.
      https://medlineplus.gov/ency/article/003428.htm

      I have always heard having 1 or 2 o-bands is considered normal but it can also depend on the Lab...But I could be wrong.

      Hopefully the Cleveland Clinic will have more conclusive answers for you.
      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


        #4
        Thank you for your input! I’ll be honest— I don’t want this to be MS. But with my numb, tight, heavy leg, numb foot, tingling hands, nerve damage in both legs, constant peeing, clumsiness, exhaustion... then the spinal lesion, brain lesions and the bands showing up in the CSF, I just really don’t think it could be anything else. My albumin in CSF was really low too, but idk what that means.

        I’m scared because of how this hasn’t responded to IVSM and continues to slowly get a bit worse, that it may be the progressive form, but I also don’t have enough information to know that yet either.
        DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

        "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
        - 2 Corinthians 4:16

        Comment


          #5
          I am glad you made appointment at Cleveland Clinic.

          With brain lesions and MS, location is key. They tend to be in certain areas of the brain. There are many reasons for lesions in the brain, so it is good that you are having experts take a look.

          Lots of luck with your appointment. I know it can't come soon enough.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi smalltowngirl,

            I don't know if you have MS or not hopefully The Cleveland Clinic can give you some definitive answers.

            Originally posted by smalltowngirl View Post
            I’m scared because of how this hasn’t responded to IVSM and continues to slowly get a bit worse, that it may be the progressive form, but I also don’t have enough information to know that yet either.
            In the case of Multiple Sclerosis: Steroids are anti-inflammatory, active MS lesions is inflammation. Steroids may shorten an exacerbation (relapse, attack, flare-up) but will not change the course of the disease. Steroids may or may not be helpful, sometimes the exacerbation just needs to run it's own course. It is possible for MS exacerbations, with or without steroids, to get worse before seeing improvement.

            Sensory symptoms such as numbness and tingling, (which are abnormal sensations), are not usually helped by steroids and can come and go on their own. Steroids are not used for symptom management and it is not uncommon for a person with MS to deal with symptoms that come and go or have residual symptoms.

            What I guess I am trying to tell you is steroids won't necessarily make everything go away if it's MS

            Try to relax and remain calm. Give your body a chance to recover. Take care
            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


              #7
              It’s suspicious for MS and you’re wise to get another opinion. I hope you have someone to go with you to the appointment who can take notes and offer you help and support.

              Is your neuro an MS specialist?

              I read it’s not usually normal to have O bands in your CSF. But there are reasons other than MS. For example, Lyme Disease.

              Comment


                #8
                Poolwatcher, current neuro is not an MS specialist. I was referred to him from the ER and have seen him three times so far in the last month. Yes, my husband will be with me. I even thought about running my phone voice recorder so I don’t forget anything and can listen again after I leave the doctor too.

                I read the McDonald diagnostic criteria today and I don’t see any argument against MS. I’ve looked up so many differential DX to no avail.

                I’m so glad this forum exists. It’s wonderful to be able to discuss this with others who are going through it, or have already been through it. I live in a small town (hence the screen name) and I only know two other people with MS. But they’re doing great!
                DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                - 2 Corinthians 4:16

                Comment


                  #9
                  Hi Smalltowngirl,

                  Hope all goes for you in getting the answers you need.

                  I too use the Cleveland Clinic for my neurology needs.

                  Dr. Willis is awesome there. Riverside hospital in Columbus is great also (neurology dept )

                  with Dr. Boster. Both docs have great recommendations in Ohio when it comes to MS.

                  Take Care

                  Comment


                    #10
                    Omw to Cleveland!

                    I have my first appointment at Cleveland Clinic TOMORROW! I’m so excited, even though I’m also anxious about what to expect. Thanks, y’all!
                    DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                    "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                    - 2 Corinthians 4:16

                    Comment


                      #11
                      I hope all goes well.

                      Comment


                        #12
                        Originally posted by smalltowngirl View Post
                        I have my first appointment at Cleveland Clinic TOMORROW! I’m so excited, even though I’m also anxious about what to expect. Thanks, y’all!
                        Good luck today.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          I am also in limbo. I have had mri of the brain and back. The doctors found a lesion on my brain. I have numbness, tingling, sharp pain on my right side. I also have seen a neurologist optometrist and he said that my right eye goes inward and my vision line in ny left eye is low.

                          I understand how you feel. I am going to see a MS doctor at Mt Sinai’s ms center on March 19.

                          Comment


                            #14
                            I can’t even begin to explain how great the visit was. I saw Dr. Mahajen and Dr. Cohen. Both were excellent, although I only saw Dr. Cohen briefly. The level of care at Cleveland Clinic far surpassed any care I’d ever received.

                            Dr. Mahajen prescribed treatment for my symptoms, so I can’t wait to start those meds. He also gave me something for my mood. I hope to start Ocrevus in the near future, as soon as insurance approves, etc. I’ll be returning to Cleveland Clinic for my infusions and to continue my care. He also ordered an MRI of my C-spine. My EDSS score was 2.5.

                            Thanks for the support and encouragement!! I have my head up now, and look forward to starting DMT soon.
                            DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                            "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                            - 2 Corinthians 4:16

                            Comment

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