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Hello - Here's my bizarre world of tumefactive MS

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    #16
    Hello Tammy

    Thank you so much for the update!

    I'm so glad for you that you have found a good place (UCLA) and caring, compassionate Neuros to help you in treatment for Tumefactive MS.

    Let's hope you have good results from your symptom management for the nerve pain, muscle pain, and also benefit from PT for your walking issues.

    Maybe the Copaxone will slow progression. And then, you have the new oral med to look forward to.

    Keep positive Tammy, things are looking a little brighter

    Take care,
    KoKo
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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      #17
      I was diagnosed with tumefactive MS (probably) and it all happened kind of backwards.

      When I was diagnosed with MS, by MRI ordered for MS, two "brain tumors" were noted in addition to all the MS lesions. The MRI was repeated 3 months later to observe them for growth, while in those 3 months in underwent a bunch of tests to find the "primary cancer" that must have sent multiple metastases to my brain.

      The second MRI 3 months later showed that one brain tumor was growing very slowly, but it still had a "benign appearance" of meningioma, which is not malignant. The other tumor had not changed in size. There was no cancer elsewhere in my body, so these brain lesions were not mets. The repeat MRI's continued until the meningioma got big enough to require surgery, but the other "tumor" remained unchanged, and that continued for the whole 5 years I had annual MRI follow-up for the meningioma.

      Now many of my neuroscientists think "the other tumor" is actually tumefactive MS, but since it hadn't grown, they felt I should just leave it alone. No brain biopsy, and certainly not another craniotomy. None of the other MS lesions had changed, and I am about the same as I have been for the past 8 years, even though I quit Copaxone 2 years ago and I haven't been to the neuro in about 4 years.

      I think I was lucky that all the attention was on the meningioma, not much attention paid to MS, tumefactive or otherwise. Back in the 1980's when doctors first thought I had MS that should be treated (no DMD's back then), they used chemotherapy of some sort and I thought it was awful as far as side effects. I lasted maybe two weeks and quit.

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        #18
        Originally posted by nsubola View Post
        Hi Tammy,

        Hope you are doing well. I'm really sorry about the brain surgery and the big ordeal to get a diagnosis of Tumefactive MS. You are right to get into a specialists office. I feel really lucky that I have a doctor at the Mayo, she specializes in MS and wrote a study on Tumefactive MS.

        I don't know how to give you my email or how to update my profile to have my email listed. It's ok if the moderators send you my info.

        All the best
        What is the doctor's name at the Mayo clinic and where is it located? Also, how would I be able to obtain a copy of this study that she wrote?

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          #19
          Hi Cuzzy,

          I posted a reply to your thread under general questions. Nsbuola hasn't been on here and I never found what he was talking about.

          Please post your own thread here under "tell us about yourself"

          I'd like to hear your story, did you have a biobsy?

          Tammy

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            #20
            If you go to the Mayo Clinic website and check the Department of Neurology you will find a list of all their neurologists. They have 11 neurologists (3 are women) who specialize in MS at their Rochester, Minnesota clinic, which is their main location. Mayo also has branches in Phoenix, Arizona and Jacksonville, Florida.

            One of those doctors, RH Gavrilova, published this article on tumefactive MS. I hope it is OK to list the article, and then you can find it on PubMed, as it might be the one you are looking for Cuzzie:

            //Brain. 2008 Jul;131(Pt 7):1759-75. Epub 2008 Jun 5.
            Clinical and radiographic spectrum of pathologically confirmed tumefactive multiple sclerosis.

            Lucchinetti CF, Gavrilova RH, Metz I, Parisi JE, Scheithauer BW, Weigand S, Thomsen K, Mandrekar J, Altintas A, Erickson BJ, König F, Giannini C, Lassmann H, Linbo L, Pittock SJ, Brück W.

            Department of Neurology, College of Medicine, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA.//

            I went to Mayo Clinic for my brain surgery and thought all the doctors I saw there were wonderful. However, I did not go to their MS Clinic.

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              #21
              About Me

              First thanks for all the information.
              In Feb 2010, I began dropping things and my left hand fingers went numb. I was in Chicago at the time and blamed it on the cold and snow. I live in SOUTH SOUTH Alabama. Anyhow, when I got home and was unable to type on my laptop, I went to my doctor. He thought I had a stroke. Ordered EKG, echocardiogram and CT scan of the brain. CT scan showed suspicious areas, so onto a MRI. At that time it showed 3 tumors and I was referred to my neuro and she told me that it was probably mestastic cancer.

              After lumbar puncture, full body CT scan and other tests, they wanted to do a brain biopsy. I was referred to a brain surgeon for this and I was ready to do it. He was going to do it within a couple of days. My MRI was 2 weeks old and he wanted to do one more to have the latest one available....anyhow, we did it right then....he looked at it and said nothing was wrong and the tumors had dissappeared. My hubby and I celebrated for several hours. Anyhow, the next day my nosey self decided to look at the MRI and the tumors were there plain as day, along with 2 new additional ones....needless to say, I will never set foot in his building again. But it did save me from the brain biopsy. My neuro and I both did some research and there is a MS "guru" at UAB (University of Alabama in Birmingham) which is a major hospital/medical school. He and my neuro both agreed that it is tumefactive MS. I did one round of solumedrol and wound up in the hospital as I got very ill.

              We aren't sure if it was an allergic reaction or if I happen to catch a virus or what. My nuero said that we would try the solumedrol one more time (when it's needed), but if I had another reaction, we would know I am allergic to it and we would have to go with an alternative route. Right now, I have numbness and tingling in my left fingers, my right thumb and areas up to my right elbow, numbness and tingling in my toes, chronic headaches, lots of balance issues, vision problems, FATIGUE, have lost about 55-60% of my hair. I am currently on Rebif, anti-inflammatory med, migraine maintenance med, biotine (for hair loss), cymbalta, anti-anxiety med, Vitamin D, and pain pills. If we can ever get BCBS to approve it, I will start taking Ampyra, but the first time it was submitted to Blue Cross, they denied it. Neuro has gathered more info for them and resubmitted, I am still waiting to hear back on approval this time.

              Well, that was about as short as I could make it, but that's my story....I left Alabama fine and came back from Chicago with MS....I don't like Chicago too much....LOL

              **Post edited by Moderator to break into paragraphs for easier reading! Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

              Cuzzie

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