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    muscle biopspy

    Has anyone here ever had a muscle biopsy? My neuro is (after 11 years of treatment of MS) second guessing himself because I use forearm crutches to walk and a wheel chair for longer distance......says i'm too young! 44 What?????? Says i'm not his typical ms patient and thinks something else is going on.

    Well I'm not a Dr. put I live in severe pain everyday, depresssed because i can't do the things I used to, can't walk due to balanace and pain, can't remember anything. Gee sounds like most of the posts here.

    What do you people think? Oh and he wants to send me to a neuro muscular specialist too. Mind you I have been on every toxic drug avail during the last 11 years to no avail. Why would he do that if he didn't think it was MS
    Linda

    #2
    That sounds really weird.
    Muscle no, my guy had a brain biopsy done because when he went into the ER for his side being numb, they thought he had masses in his brain, like cancer.

    I'm not too sure about your doc. There is no typical MS patient as far as I've researched because everyone's MS is different, no two people are going to be the same. You are allowed a second say. Is there another neuro you could talk to?
    I am here for my fiancé. He is age 30 from Ohio but now lives in Missouri with me. I'm learning all I can about MS to pass on the info to him. He was DX right before his birthday May 2011 and he believes he might have had it since he was 15.

    Comment


      #3
      Hi Linda:
      I see two aspects to your situation.

      1) If something doesn't make sense, then the proper approach is to go back to the beginning and look at the evidence again to see if something has been missed or misinterpreted. From your description, it sounds like your neuro feels that your presentation doesn't make sense so he wants to gather more information (i.e., something has been missed) and re-evaluate (i.e., something has been misinterpreted). If he feels like you're not his typical MS patient and thinks something else is going on, then it's reasonable for him to be looking for more information. If you're in severe pain and depressed and there's the slightest chance that there might be some other avenue that might help you, should your doctor not be investigating it? Some people would consider that approach to be diligent and open-minded.

      2) Conversely, assuming that this is the same neuro who has been treating you for 11 (or at least several) years, why would he now be second-guessing his diagnosis? Should he not have diagnosed you more carefully at the beginning? And if he wasn't the one who made the diagnosis, should he not have reviewed all of the data and looked for discrepancies earlier? This might cast doubt on the doctor's diagnostic capabilities, and getting another opinion might be reasonable.

      Even allowing for the possibility that there's "no typical MS patient," there are many other conditions with which MS shares signs and symptoms. Accepting something that doesn't make sense because "there's no typical MS patient" is negligent.

      To give you some perspective, my neuro for 4 years overlooked the evidence that what I had wasn't acting like MS. She'd made her decision that I had MS, and as far as she was concerned, I was going to have MS even if she had to give it to me herself. I knew I didn't have MS and I had to push to get an opinion out side my medical group. As it turns out, I don't have MS. I have NMO. If one of us hadn't accounted for the fact that may case didn't make sense for a diagnosis of MS, I would have continued to be on the wrong medications and suffered even more irreparable damage.

      While MS does have a variety of ways it can present itself, there is a finite number of things that MS can do. There are typical and atypical presentations of diseases. It's those typical cases that turn out to be the ones called "textbook cases" because they make the best examples of what the disease acts like. To think that there are no typical cases (of MS or any other condition) contradicts the entire way in which diseases are classified and identified.

      What you decide to do comes down to how much faith you have in your neuro's medical judgment. Do you have enough faith in your own ability to recognize MS that you're confident that you have MS and don't want to explore any other possibilities? If you've "been on every toxic drug avail during the last 11 years to no avail," are you interested in getting another opinion, whether it's from a neuro-muscular specialist or another neuro, to see if there's another avenue to pursue?

      Comment


        #4
        biopsy

        Well redwings you sure gave me alot of great info to think about. My neuro is well respected and all these years i've been told i have been in good hands. He was not the one who dx me, so you are right for me to trust he knows what he's doing.

        I guess it's a little hard to swallow that you've been told and treated for MS only to be told something else may be going on. Not that he thinks I don't have it, may have another illness with it. How were you dx with NMO?

        I just think what the heck, better to have it and rule any other disease out. Just a little cut in my already painful leg!

        Thanks for your thoughts!
        Linda

        Comment


          #5
          Hi Soccer3

          Redwing has some great information. You didn't say how long you have been with your current neuro or what you had done to provide your dx of MS - did you have the lumbar puncture, additional MRIs?

          I would get a second (third) opinion from the neuro-muscular specialist and another MS neuro, as the NMSS for a list of neuros in your area.

          I just can't imagine going 11 years, changing medications and still being in your situation and possibly being misdiagnosed.

          I'm sorry you are in so much pain. I know it doesn't help you but I do have a friend with MS who has simliar issues. She's had MS for 3 decades and in quite a few trials. Her current neuro thinks that some of the deterioration she's now experiencing and has been for several years was because of the mis-managment, lack of and just the delay in dx. You could very well have MS and just not treated the right way - it's such a different disease for most people, nothing is predictable.

          I think getting another opinion and some "traditional" tests would be a good idea, I've never heard of a muscle biopsy except for certain cancers and I'm sure blood work would have ruled that out at this point.

          Prayers to you
          This music is the glue of the world Mark. It's what holds it all together. Without this, life would be meaningless

          Comment


            #6
            I think the thought of a muscle biopsy is to rule out Muscular dystrophy (MD).

            I like the idea your doc is not just writing everything off as MS when for any reason, maybe not evident before, there is reason to double check.

            Medicine is not pure science but also an ART


            Gomer

            Comment


              #7
              biopsy

              I've had my current neuro for 11 years. When I first met him he told me my MS would not be progressive. Does he have a crystal ball! In the last 5 years I went from walking 2-3 miles a day to unable to walk a few feet without assistance. I've had years of steroirds, been on Avonex, Copaxone, tysabri, IVIG and plasmapheresis. He claims i'm not his typical MS patient. Well I thought there was no such thing.

              I was dx 11 years ago thru symptoms and 3 small lesions on brain. I've also been on all kinds of meds. Currently on diazepam and morphine and good ol THC when really bad, Which only takes the edge of the pain.And a gluten free diet. I recently had a normal EMG. At this point a muscle biopsy is a walk in the park and maybe some new answers. I have also started Reikki....biopsy next tues...wish me luck! I'm not in any frame of mind to start with a new neuro all over again...but looking forward to seeing a specialist. I so want to walk and live life again.

              Be well everyone
              Linda

              Comment

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