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Anyone diagnosed with MS then another Neuro said you don't have it?

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    Anyone diagnosed with MS then another Neuro said you don't have it?

    I need to vent, and to ask for feedback.


    The story starts in 1998 when I started having pins and needles and numbness. No dx from family doctor, no mention could be MS. Then in 2001 symptoms worsened and I saw a specialist in MS. After an MRI, he said there were lesions but not enough to diagnose me with MS. He told me he expected I would have a diagnosis of it within 3-5 years. Jump to 2004. New symptoms arose and I saw a different MS specialist, (an expert nationally in the field of MS, that's important later), and he diagnosed me with MS.


    While in his care I had 3 relapses in the span of 6 years. He told me my MS was mild and mostly sensory. My symptoms support that to this day. I have a few more balance issues than I did then and some more weakness, but I'm also older now, not the spring chicken I was then. I was on Avonex, after 2 years so he took me off because of worsening depression and a relapse. Tried Copaxone, allergic reaction. I decided then no more DMD's. He understood I knew the issues without them and respected my decision. So we did Solu-Medrol every 3 months.

    This MS doc is in a nearby city and I am mostly on my own. Because of the drive, especially doing Solu-Medrol and if I needed more serious hospitalization, I wanted a doc more local.

    In 2011, I saw a local neuro. First visit, great. Second visit in 2012, almost came to blows over my decision to stay off DMD's. My MRI's didn't change significantly from 2004 through 2012. I still knew the ramifications. I give a great deal of consideration to the doctor's recommendations. But, at the end of the day, this is my decision. I am pro-active with all of my healthcare. He didn't take my position to well, sort of the "do it because I say so" mentality. Not good with me. So, I didn't see a neurologist from 2012 until this year.

    I went to the only other local neurologist in January and today. First visit, fine, going over the history, ordering tests, etc. I told him my position on DMD's at the first visit. Today's visit was a disaster. He tells me he doesn't think I have MS! HUH? That the lesions don't seem to him to follow the pattern of MS and that I should have a spinal tap so I can know for sure and get a second opinion from another MS specialist. Who?

    Well, the same one I went to in 2001. That way I will know I have it and I can start medication. I pointed out to him it wouldn't matter, I still wouldn't take the medication. So, our conversation went like this. He said "oh, well there is no reason to then, but I still think it could be something besides MS". Like what? Small fiber neuropathy, because I have pins and needles. Does this cause lesions in the brain? No. What test is there for that? Skin biopsy. Well, what would cause the lesions then. Smoking and migraines. But, I didn't have migraines in 2004 and gee, I don't have migraines now. He asked if I get headaches. Yes. No nausea, no vomiting, no auras, and aspirin takes them away, I just get them for a few days every 3-6 months. And he latched onto that as migraine? Then I've found the cure for migraines folks, aspirin.

    At that point, I told this doc that I would not go down a path I went down from 1998 to 2004 to confirm a diagnosis I already had or to look for something else he can't logically explain I have. He explained just because a nationally known expert in the field of MS said I had MS doesn't mean I do, people make mistakes. And the other doctors I saw, including one for my disability, just said I did because the expert said I did.

    At that point, I became so dizzy, just got off a roller coaster dizzy, and I had told him this symptom both visits. Stress causes it to rear it's ugly head. He glossed over that. He also glossed over my needing to hold onto the wall when I tried to walk toe to toe. And the other myriad of MS symptoms I had. Just focused on the ones that fit his theory. Both visits he asked me over and over about the pinchy/bites I get in my legs and the foot burning. That's all he asked about. Not numbness, weakness, dizziness.

    I left it with him that I would have to consider if this would be a good doctor/patient relationship if he is left with treating me for something he doesn't believe I have. He said it may be benign MS and that he would leave MS on my chart since he couldn't say I don't have it either. Gee, after 45 minutes of explaining how you don't think this is MS that's mighty big of you.

    When I went to the MS expert, he put ALL of my symptoms together, along with my MRI, and relapses and diagnosed me. So, after 12 years of dealing with what I was told is MS, I have no doubts. But I am left wondering what on God's green earth is going on with this guy? Now, I don't know if I want to keep seeing him or if I trust him, and if not, then where do I go? Has he found other patients misdiagnosed by the other doc? Does he just have his own agenda? Was this all to get me to take meds? Has it been long enough now to be able to diagnose this as benign MS? Do I have something along with MS? Was the MRI faulty (they kept telling me to stop moving)? All I know is I'm dizzy. And I have a stress-induced headache. And a lot of questions I hope someone may have some thoughts on.

    #2
    Trust your gut. Work with a neurologist whom you respect and treats you with respect.

    Comment


      #3
      I was initially dx by a general neuro who reversed my dx a month later when he learned I planned to consult with the local MS specialist, his med school professor and lecture colleague. Doctor politics.

      After 5yrs on copaxone and a ms dx, I relocated across the country and needed a referral for an MS specialist. That led me to a general neuro/stroke specialist who reversed my MS dx.

      I found a MS specialist not long after the general neuro visit. My MS specialist asked me, with my extensive medical records and otherwise in good health, '25+ brain lesions, if not MS, what else could it possibly be'.

      I've become suspicious of neuros who want to refer to a 'colleague' run same test again and again, particularly when you have MRIs with evidence of MS and rule outs/mimics eliminated.

      Comment


        #4
        I'm also sorry, K, for your mixed messages.

        When I switched from my general neuro, after a 2 year limbo, followed by a 5 year MS dx, to an MS Specialist, she did question my dx after thoroughly reviewing my MRI's, other tests, and written medical records. But, after doing another MRI (my 8th one) and repeating a few other tests, she concluded that, yes, I did have MS.

        I appreciated her diligence, and the effort to confirm that my dx was correct, so that I was being treated for the right illness. MS is difficult to dx, and, although there are definitive dx guidelines (The McDonadl's criteria) there are no tests that conclusively determine whether one has MS or not.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          I'm of the opinion, based on my experiences getting a dx, that there are less than scrupulous doc willing to milk insurance and cash from patients with non life threatening but difficult to dx sx. Too many docs who are unqualified but willing to refer to a colleague, run more test, and string a profitable patient along.

          I'm not disputing the necessity of ruling out MS mimics, but it does require a highly skilled, qualified, and ethical doc with the confidence to make a MS dx, to end the senseless retesting, re-referral to consultants, when all that remains are MRIs indicating brain lesions consistent with demyelinating disease consistent with MS.

          Comment


            #6
            Originally posted by MiSunderstood
            KSeraSera, Tell this doctor that the only way to truly diagnose "benign MS" is with a corpse. There is really no honest way to call Multiple Sclerosis benign unless it is found postmortem. There are mild, atypical, asymptomatic, etc types of MS. But a truly benign MS is discovered during autopsy.

            And, I'm sorry for your troubles and mixed messages from doctors. You have my sympathy. I've had my share of it too and it really ticks me off.
            Thank you! Your reply made me laugh. I have a dark sense of humor. And it let me know that being ticked off too is ok. Because after the astonishment wore off, I was fit to be tied.

            Comment


              #7
              Originally posted by Mamabug View Post
              I'm also sorry, K, for your mixed messages.

              When I switched from my general neuro, after a 2 year limbo, followed by a 5 year MS dx, to an MS Specialist, she did question my dx after thoroughly reviewing my MRI's, other tests, and written medical records. But, after doing another MRI (my 8th one) and repeating a few other tests, she concluded that, yes, I did have MS.

              I appreciated her diligence, and the effort to confirm that my dx was correct, so that I was being treated for the right illness. MS is difficult to dx, and, although there are definitive dx guidelines (The McDonadl's criteria) there are no tests that conclusively determine whether one has MS or not.
              Thanks. You helped me realize that his wanting to do a spinal tap was to definitively say I did not, but I learned from the forums, they can be inconclusive as well. My original dx came after many rule-outs. That is why the spinal tap wasn't done then, MS specialist said no need. And none of this current docs "possibles" fit all the symptoms I have and tests I've had. MS does.

              Comment


                #8
                Thank you all

                Thanks everyone. Replies helped. I wrote the thread shortly after I got home, can you tell by the way I rambled and put all my frustration into the keyboard! After calmly reviewing everything he said, I was able to realize this. What a crock. I can't make sense of his position, and he couldn't explain it logically. My brother and I actually had a good laugh out of how illogical it was. When doc used the words "nationally renowned MS specialist" and then told me he thought he might be wrong, it was like going to your local rural hospital and them saying your John Hopkins dx is way off base. Isn't that why people go to "nationally renowned" doctors? So, I think I will be going back into the city to my first MS specialist.

                Thanks again...

                Comment


                  #9
                  Even better - the SAME neuro who dx just listed the reasons another neuro thinks I have PPMS - positive LP, one lesion, progressive disability - and then said now I don't have MS.

                  Comment


                    #10
                    KSera,
                    I think your decision to go into the city and see the MS specialist is the best thing to do. Go for it. Good luck

                    Comment

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