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    #1

    Wondering why doctors say no pain with ms

    Hi all, sorry so many suffering from ms pain. I know how that feels. Everyone suffers something different, some the same. But what I'm wondering is why so many doctors still insist there is no pain with MS?! Really upsets me. I've seen 2 neuro's so far, and both said there is no pain with MS. I have researched and several studies have been done, proving there IS pain associated with pain. So, don't these doctors keep up with the latest. My present neuro says they "keep up with the latest). I do like him because he listens and explains things, but this one thing about him bothers me. Just wondered what anyone else may think about this and does your neuro believe there is pain associated with ms?
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    #2
    Hello seshultz62,

    I'm not sure why some Neurologist's still say MS does not cause pain

    I still have the same Neurologist who diagnosed me in 1985 and even way back then he was quite familiar and aware that MS does cause pain.
    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

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      #3


      That is so bizarre. All my doctors acknowledge pain with MS as does the MS Society.

      http://mssociety.ca/en/pdf/managing-ms-pain.pdf

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        #4
        My understanding of the...

        'no pain with MS' theory is based on the knowledge that brain lesions are not painful. There are no nerve endings? in the brain and therefore lesions aren't painful. CNS lesions often DO produce pain in the peripheral nervous system.

        If you've ever seen documentary films of brain surgery, the patient is often awake, while the neuro surgeon 'presses' areas of the brain that control arms, legs, and other body movement. It's incredible film to see. And it is painless.

        This is my best attempt to explain the antiquated thinking 'no pain with MS'.

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          #5
          My MS doctor said that too...

          My MS doctor told me that pain is not consistent with MS too. And then he said that the only thing that could possibly help is Gabapentin. What complete nonsense! How can they be considered "specialists" when they are so uninformed about things that are so easily knowable?
          PPMS
          Dx 07/13

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            #6
            pain

            My Neurologist said my left hip pain and my low back pain is not due to MS. any one else been told this.

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              #7
              Originally posted by Memories View Post
              My Neurologist said my left hip pain and my low back pain is not due to MS. any one else been told this.
              Hello Memories,

              Have you had any diagnostic testing (MRI of lower back and/or an x-ray of your hip)?

              I don't know if your hip and lower back pain is MS related only your Drs. can determine this. Pain can be common for many with MS but we can have other health problems which are not due to MS, including pain.

              Best wishes.
              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

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                #8
                I believe that theory ended when the first doctor got MS.

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                  #9
                  Originally posted by Memories View Post
                  My Neurologist said my left hip pain and my low back pain is not due to MS. any one else been told this.
                  Your gait may have been altered without you knowing it, causing hip and lower back pain. The gait issue may be from MS, but the pain itself may be due to a mechanical issue. Worth a trip to a PT or orthopaedic surgeon to take a look.

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                    #10
                    Originally posted by Memories View Post
                    My Neurologist said my left hip pain and my low back pain is not due to MS. any one else been told this.
                    Hi Memories,

                    Welcome to MS World! Sorry for the reason you are here, but we're glad you joined us. I hope you'll find this site as informative and supportive as I have.

                    I was told by a few neurologists my lower back pain wasn't related to my MS. In my case, turned out it really was. Not only was significant spasticity affecting how I walked (no doubt contributing to the lower back pain), turns out I also have spasticity in my back. My doctors finally determined that when I had the trial for the baclofen pump and my back pain went away completely. Unfortunately, the trial dose was too high and my legs became noodles. So, because my dose has had to be lowered because of my legs, I've never again experienced the same relief.

                    I now also have pain in one hip, the result of an injury (which came about because I fell) and a weak hip flexor. It's not a great combination and both are linked to my MS.

                    From the NMSS:

                    Back and other musculoskeletal pain in MS can have many causes, including spasticity. Pressure on the body caused by immobility, incorrect use of mobility aids, or the struggle to compensate for gait and balance problems may all contribute. An evaluation to pinpoint the source of the pain is essential. Treatments may include heat, massage, ultrasound, physical therapy and treatment for spasticity.

                    http://www.nationalmssociety.org/Sym...-Symptoms/Pain

                    Best wishes ,
                    Kimba

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

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                      #11
                      "no pain" comment...

                      Hi all, yes I have also been told that "ms is not about pain" by my physical therapist and a neurologist who is considered an "expert" on ms.

                      Really? Well I have pain. It was severe at first when it took out my knees. That subsided and now it's off and on, in random places. (but I still can't walk-for one year now) In the last 5 days I've been having a terrible and very sharp pain in my waist on the right side. It feels like I've been whacked with an axe. It's kind of bizarre. I haven't even talked to a dr about it because they tell me I shouldn't have pain.

                      And very often I get terrible pain in my head. My pain comes and goes. There are no other explanations. I have been checked for everything else. I am certain it's due to the ms.

                      But what do I know? (that's how they make me feel). I hope this one will also subside because it's a bad one.
                      I am shopping for a new neurologist who is open minded to real pain and more knowledgeable. Thanks for my chance to vent!

                      Best wishes to you all

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                        #12
                        Hi eliden3,

                        Originally posted by eliden3 View Post
                        I am shopping for a new neurologist who is open minded to real pain and more knowledgeable.
                        From what you have written it sounds like a very good idea to find a new Neurologist, one who knows and understands pain and MS go together for many.

                        Best wishes and I hope you get some relief from your pain soon.
                        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

                          #13
                          I agree with looking for a new neurologist. I've had an urgent care doctor, my primary care doctor, and my neurologist all who were understanding about pain and MS.

                          (But, on the other hand, I had three different urgent care doctors who never considered MS. My symptoms were spasticity and pins-and-needles in one side to the point of paralysis. It was very painful. They just kept giving me vicodin, which didn't do much of anything.)

                          Comment

                            #14
                            This thread pretty much sums up why I don't go to the doctor and report each new symptom. I'm not going to sit there and have some doctor who is pain free tell me it is all in my head.

                            Before being diagnosied, years before I was dioing things like writing down all my stmptoms and bringing them in. Some doctors wouldn't even look at my list! If they had they might have noticed back then everything I was listing was a symptom of MS!

                            I have had doctors tell me I was too young to have back pain! I have honestly gotten so frustrated with their lack of belief and caring I have felt like punching them and making them feel some pain! (In my mind only, I not a voilent person)

                            Comment

                              #15
                              Hi again!

                              Originally posted by SNOOPY View Post
                              Hi eliden3,



                              From what you have written it sounds like a very good idea to find a new Neurologist, one who knows and understands pain and MS go together for many.

                              Best wishes and I hope you get some relief from your pain soon.
                              Hi SNOOPY Thanks for your supportive reply (also to Dale76 and leaftree) I am still working on finding a new neurologist and I'm in the process of seeing a 3rd one.

                              I'm still looking for a support group in my area. This is all still very new to me and the dr's have been less than knowledgeable and not as supportive as I think they should be.

                              Many of you here have neurologists who really know what's going on! I need one like that! It takes a lot of work and searching to find one-so I'm on it.

                              That pain I mentioned in June is less problematic now but I have some other new pains! They do seem to come and go and so does the severity. So glad the dr's say I'm not supposed to have pain! So I must be making it up!

                              I think I'll start making a video at 3 am of me- tossing and turning, taking a pain pill, putting on a heating pad to try to get some relief and send it to them at home at 330 am. Maybe then they'll get their head out of their bottom (nice word choice to be fair to all of you dear folks).

                              Anyway, I'll let you know how it goes with the 3rd neuro.

                              Best wishes to all of you

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