Announcement

Collapse
No announcement yet.

More confused than ever...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    More confused than ever...

    I have had symptoms of MS for some time (years). I was diagnosed with probable MS after a bout of ON, plus positive LP. However, my MRI at the time was normal. My symptoms stabilized and even decreased somewhat over time, so not much was done.

    Then, last year, my symptoms flared again, this time even worse than the first time. I had moved, so I decided to see an MS specialist in my area. First, she reviewed my old MRI's and indicated that she did not think I had MS. However, to be sure, she ordered a new MRI.

    The results came back and the radiologists report stated: "There are multiple foci of hyperintensity on spin density, T2 and FLAIR within the white matter, compatible with the clinical diagnosis of multiple sclerosis."

    But, when my doctor emailed me to tell me about the results, she stated there was no sign of MS on the MRI. What? Now I am totally confused.

    I am desperate at this point for something to be done. I am having a lot of trouble walking and difficulty swallowing. I have constant pain and deal with muscle spasms 20 to 30 times per day. I am also super sensitive to heat.

    Any advice? Is it time to seek a new doctor? Is it common for the doctor and radiologist to disagree like this?

    Thanks for letting me vent.

    Jason

    #2
    Hi Jason ~

    Originally posted by jmwarren21 View Post
    But, when my doctor emailed me to tell me about the results, she stated there was no sign of MS on the MRI. What? Now I am totally confused.
    Did you have a follow up appointment with the MS specialist, or was the e-mail the only
    communication?

    If you have had the appointment already, what did the neuro say about the MRI results and the cause of your symptoms?

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

    Comment


      #3
      Hi KoKo, I do not have any appointment scheduled with this doctor, yet. Her email was the only communication I have received since the MRI. I live an hour and a half away, and I am considering making an appointment, but I am trying to get some clarification first before I travel all the way up there.

      Comment


        #4
        Originally posted by jmwarren21 View Post
        Hi KoKo, I do not have any appointment scheduled with this doctor, yet. Her email was the only communication I have received since the MRI. I live an hour and a half away, and I am considering making an appointment, but I am trying to get some clarification first before I travel all the way up there.
        Ok, thanks.

        I asked because in most cases, the neuro will schedule a follow-up appointment in order to go over the test results, answer questions, and schedule any more tests, if necessary.

        I assume that this MS specialist is the one most near to where you live?

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

        Comment


          #5
          I have two concerns with the info in your post about your MS doc. First, I would expect a MS doc to explain the difference between your older 'normal' MRIs and the new, recent ones that the MRI report is based on.

          Second would be the obvious difference between the new MRI report and the MS specialist email to you. If your new MRI indicated no changes from the older MRIs, an email might be acceptable. But there's an obvious discrepancy between the radiologists MRI report and the doc's email that in my judgment should have come with an explanation, preferably via a follow up appointment.

          It's entirely possible the MS doc has justifiable hesitation or doubt about giving a MS dx at this time, but even that leaves an email that disputes the findings on the MRI report.

          I hope your doc gets back with you soon to clear up the confusion. And follow up to let us know how things work out for you.

          Best of luck and take care

          Comment


            #6
            Absent a follow-up appointment, can you leave a message asking neuro to call since you are confused because the radiologist report seems to conflict withe her email and you are unsure of next steps.

            A good neuro will return your call. You can still schedule to follow up, asking her to review your MRI with you so you can physically walk thru her explanation. And also ask next steps she recommends based on your symptoms. It may help to take another person who can supplement your eyes and ears, and take notes for you, as it can be alot to take in.

            Finally, I would look for another neuro to have them review your prior tests, along with current MRI to get a 2nd opinion on diagnosis.

            I can only imagine your frustration.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Thank you all for the feedback. I have a call in to my neuro's office, and I am waiting for her to get back to me. I don't want to travel that far just to be told I am fine. But, I may have to in order to get an explanation.

              Comment


                #8
                Originally posted by jmwarren21 View Post
                Thank you all for the feedback. I have a call in to my neuro's office, and I am waiting for her to get back to me. I don't want to travel that far just to be told I am fine. But, I may have to in order to get an explanation.
                Good luck Jason.

                Let us know what your neuro says.

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

                Comment


                  #9
                  Originally posted by KoKo View Post
                  Hi Jason ~



                  Did you have a follow up appointment with the MS specialist, or was the e-mail the only
                  communication?

                  If you have had the appointment already, what did the neuro say about the MRI results and the cause of your symptoms?

                  Take Care
                  Hi Jason , veryfy if maybe you have a near neurologist the you can make an appointment for a second opinion. Donít forget to take your MRI results both of them so the new dr can see them.

                  Comment


                    #10
                    Just got an email reply from my doctor. She agreed that there is some confusion but did not offer any explanation of why she and the radiologist have such different opinions. Instead, she said she is going to have the radiologist change their report. I didn't even know they could do that once it was part of your medical record.

                    So, I guess I will be looking for a new doctor. I need to try to find someone who will actually listen to my concerns. I can't keep going the way I have been going. Something needs to be done, but I am just so physically and emotionally tired. Having the ability to vent some of my frustration on here has been helpful, so thank you all for listening.

                    BTW, I do have copies of my last 2 MRI's so I can take them to my new doctor. I just hate the thought of having to start all over again.

                    Comment


                      #11
                      Originally posted by jmwarren21 View Post
                      Just got an email reply from my doctor. She agreed that there is some confusion but did not offer any explanation of why she and the radiologist have such different opinions. Instead, she said she is going to have the radiologist change their report. I didn't even know they could do that once it was part of your medical record.

                      So, I guess I will be looking for a new doctor. I need to try to find someone who will actually listen to my concerns. I can't keep going the way I have been going. Something needs to be done, but I am just so physically and emotionally tired. Having the ability to vent some of my frustration on here has been helpful, so thank you all for listening.

                      BTW, I do have copies of my last 2 MRI's so I can take them to my new doctor. I just hate the thought of having to start all over again.
                      Jason ~

                      Your situation wouldn't be so confusing, except for: you previously had ON and a positive LP, and you currently have difficulty walking, swallowing, muscle spasms, heat sensitivity, and you were previously diagnosed with Probable MS.

                      I also don't understand why this doctor won't give you an explanation of her findings, either.

                      Getting a second opinion seems to be the best thing to do. You do need a doctor that will listen to your concerns, answer your questions, and explain what is going on.

                      Sorry that you have to go through this frustrating situation.

                      Please know that you are always welcome to come here and vent all you need to.

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

                      Comment

                      Working...
                      X