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    #46
    Hi Helen,

    Thanks for taking the time to share your insights.

    I have had 6 MRI's at my hospital over nearly 5 years now. (wont name the hospital but an iconic music industry guy that fell off his ladder is there right now ). I decided today to have a better look at the results of the last one that was done in late november. Now that I am more understanding of many of the terms that are commonly used when talking about mri's and ms, I thought it would be worthwhile.

    The mri report talks about ms and evidence of progression. There are heaps of new lesions. When I look them up they are lesions mostly seen with ms.

    I still intend to question the crap about the reasons for the diagnosis when I see the ms neuro again on Jan 18, but right now, I feel that she is probably right.

    I am not sure if I have tell tale signs of ms or not.
    Twice i was unable to walk for a couple of days. I put it down to my back issues, but when I am honest with myself I know that my back issues (which i have had for 20 years) have never effected my legs. I have had numb patches, and in the last year I have become very forgetful. This week I was driving and all of a sudden I had no idea where I was for a couple of minutes. I am a rep on the road an know these roads like the back of my hand. Could be that I was just over tired, not sleeping well for so long now.

    I have, like you, heard good things as well about Gilenya. My sister tells me that her daughter swears by it.

    Hey Casino! I bet you look tough as you get off your harley with your leathers and all. And then pull out your walking stick! I reckon if you ever get to the stage that you need a wheelchair, (touch wood that you don't), you should take your motorized chair to your harley dealer and get it hotted up. Now that would be awesome!

    Ray and Doug. They are so good they appear in each others show. How cool is that. Did you ever see 'Men Of A Certain Age" that was shown earlier this year. It never made it to Australia, but I downloaded it. I thought it was great, but dissapointed that they wound it up because of average ratings. It also starred the guy from Quantum Leap, and Gianni from Raymond. You know, even my sixteen year old son tells me that he thinks the best comedies were all from the late 80's till the early 2000's. I think he is right. My daughter is 19 and only enjoys romance and girly shows. Hope she grows out of it soon

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      #47
      Is your neurologist an MS specialist?
      You can ask him how many MS patients he has treated in the past and/or how many he/she is currently treating.

      Also, you have the right to get a second opinion, if you want one. My Neuro is fine with this; he just wants the other doctor to share his correspondence with him. That was fine with me, and has worked well over many years.

      Good Luck!

      Alan

      Comment


        #48
        Hi Alan,

        Originally I was seeing a Pofessor of neurology, probably because he thought my symptoms and mri' s were intriguing.
        After this years mri I was referred to an MS neurologist. When I asked this MS neurologist why, she said because diagnosing MS was her specialty.

        I didn't really think too much about that until now. In a way, I guess it is sort of like a second opinion. After all, the Professor always thought that MS would more than likely be the final diagnosis.

        I still intend to ask her everything to satisfy myself that her diagnosis is correct, and if she can't do that I will go with a second opinion. I will then respectfully ask her to do the same with the Gilenya medication, explaining why I need it, and why not a different drug.

        It has been over a week since I saw her, and it probably took me a while to put it all in perspective.

        I thank everyone on this site that have generously offered me advice and suggestions. I don't think I would feel so comfortable with the whole process so soon after dx if it had not been for your help, prompting me to rationally think things through.

        Comment


          #49
          Originally posted by 0485c10 View Post
          You know instead of doc shopping for a 2nd opinion, where you already know they can be different but both right because this is a "grey" area why don't you try asking this doc to give you a choice and outline what her "aggressive" treatment plan, her "middle of the road" (moderate) treatment plan would be and mild treatment plan would be.

          Then ask her to give you benefits and risk of each treatment plan.

          and read those links i asked you to check on my home page. Please! (it might be a full day 'till i get them done)

          My guess:
          Aggressive: Gilenya
          Moderate: self injectible drug(rebif or betaseron)
          Mild: scheduled routine MRI's until symptomatic CIS(relapse)
          My MRI shows "mild" and I do not have relapses... So not sure why I am on DMD type meds.. Copaxone. I just started Copaxone... its been about a week.. not having any problems with it thus far, thank goodness.

          Question - what happens if you don't have MS and taking Copaxone???

          My last MRI (Nov 2011) showed some lesions decreased..without me taking meds.. but there was a new lesion... so that's why Neuro wanted me on dmd meds.

          My body does stay a bit tight from being tensed up all the time.. I am 52 years young going through menopausal crap as well. Too bad DMD don't help with muscle tension and tightness. Not sure if muscle tension is coming from ms or peri-menopause.. both can cause muscle tightness.

          Jay

          Comment


            #50
            I question as to whether I have MS to.

            I do know that some people get lesions with age. I am 52 years young. First mri showed a few lesions... Went to see Neuro to go over mri.. he had me do a few simple test in his office, walking, etc.

            After he was done, he said.. you have mild MS. I never had what you call a flare up, relapse, etc. I have not been on a dmd med because I have been in denial.

            Had second MRI..a few lesions has decreased but there was a new lesion... so I decided to start a dmd because of the new lesion but again.. no relapse. I started Copaxone about a week ago.. I take it on and off.. not every day.

            My biggest problem is muscle tension and tightness.. part of this can be from menopausal/hormonal issues. I take low dose ativan which helps a little..

            I am definitely in limbo as to whether I have ms or not. Suppose the lesions are from hormonal issues, sinus issues, age, etc.

            Ms. Jay

            Comment


              #51
              Just remember that its easier to catch flies with honey than with vinegar.
              Why you want to be catching flies at this time, I have no clue. Perhaps its for some form of research?

              Anyway, smart people have told me this in the past.

              Seriously, try to get off on the right foot with your Neuro. Make sure she knows why you're trying to second-guess her. Don't assume she understands how you feel or what you're going thru right now.

              Comment


                #52
                Good advice Bob. I have a funny feeling that I am going to need her professionally for a long time.

                I do want to be assured as to how she made her dx, but I will just have to make sure she doesn't think I am questioning her professionalism. I reckon if I am respectful enough I should be able to get the info I want without getting her offside.

                Futurmil2b, I reckon the same advice would probably work for you too.

                Comment


                  #53
                  Hi Dave, that's funny about getting some harley stuff put on a w/c if I ever need one! Right now my cane collection keeps growing and growing. I even got one with deer heads on it and another one that's camoflauged (sp)? Told hubby that (hopefully this won't happen) but if he ever needs to borrow one I have some that he will be comfy with!

                  Did you see your neuro again? If so, did you find out anything definite? Hopefully the new year will bring you some answers and also put your sx on the back burner for awhile!! Good luck! Casino

                  Comment


                    #54
                    Just thought I would thank everyone that has helped me out so far, and say how things went with the MS neuro today.

                    I asked her why she diagnosed me with MS and was satisfied with her answer. She explained the thing about time and space (forget exact phrase) and that I met criteria there. Also she said she is convinced that the bowel and bladder problems I have would be caused through the lesion in the spine. She is convinced my symptoms are not caused by other things. She also explained some of the lesions I have in the brain and told me they were very typical of ms lesions. I can't remember all the terminology but I do remember her saying I had 'dawson's fingers' which I looked up online afterwards. Yes, I am very comfortable with the diagnosis now. I have other minor symptoms that don't concern me just yet.

                    I then asked why she wants to prescribe gilenya when I have heard some neurologists see it as a second or third option. She has administered gilenya to many patients and thinks it is the best drug to slow progression. She thinks it is the best weapon to fight MS and cant see a point in not starting off with less than the most powerful drug.

                    I understand that her opinion is not shared by all people, but she has spent considerable time reviewing all my details and going through many tests with me. I trust her, and am happy to commence gilenya. My first dose will be on Tuesday, my 49th birthday. Was going to have a night out with extended family then, but might just put it on hold till the weekend.

                    Will definitely take the ipad with me, since I have to wait for 6 hours at the hospital when I get the first dose, and watch the last three episodes of pan am. I know it is a chick show, but somehow I got addicted.

                    Comment


                      #55
                      Originally posted by Arthur Spooner View Post
                      I do remember her saying I had 'dawson's fingers' which I looked up online afterwards.
                      The only cause for Dawson's Fingers is MS

                      Glad you asked and recieved clarification of your diagnosis.
                      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


                        #56
                        I think you did good for both yourself & your kids in researching this thoroughly and understanding what everything means prior to making a decision.

                        just wanted to post this because i was one who had previously posted strong caution against gilenya...but the first fault is ms. putting any medication into our bodies is never desirable, but the first fault exists that makes it necessary. having ms turns out to be a choice between the lesser of 2 evils. would be better not to have ms, than a choice between the lesser evils wouldn't be necessary.

                        hope your first dose went well. its wednesday here, not certain if you're a day ahead or behind us. i think ahead. so happy belated birthday too.
                        xxxxxxxxxxx

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                          #57
                          Glad you are satisifed with the doctor's explanation. It makes a big difference to be confident in your doctor.

                          I'm surprised you will be able to start on Tuesday. It took me almost 4 weeks to get all of the required pre-screening appointments scheduled: EKG, Pulmonary, Eye exam, Dermatological exam. I'm still waiting to hear if I have to have bloodwork done as well.

                          I hope your first dose appt. goes well. I can't wait for mine !

                          Comment


                            #58
                            Let me know how it goes with Gilenya. I would have much rather chosen a pill than an injection... My doc said the one big concern was whether I've had chicken pox or been vacinated (yes to both).
                            Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
                            Ampyra 10mg 2xday
                            Copaxone 1/20/12

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                              #59
                              Snoopy, I didnt realize that Dawson's Fingers only occur in MS patients. Might not be a good thing to have, but it does reassure me even more that har diagnosis is correct.

                              0485' Thanks again for all your counselling as I made my decision. We are almost a day ahead of you. (it is 6pm Thursday as I write this) . I am starting the med on Tuesday 24 th Jan.

                              Cosake, the MS neuro told me a month ago she was going to prescribe gilenya. On that day I did all the tests, eye, blood, chest x-ray, and ECG. It is a large hospital so it just meant running around to different departments. The reason I didn't start gilenya straight away was because my ms specialist was going on holidays and thought she would let me think things through.

                              JBell, I received a box of gilenya today and the leaflet states that if you have not had chicken pox you will need to get vaccinated and then wait a month before commencing Gilenya. I am sure the info is probably available online through novartis. Good luck!

                              Comment


                                #60
                                Wow - you are lucky to have been able to get all of these appointments taken care of that day. Dermatologists in our area are booking out 6 months for new patients . . . they managed to squeeze me in to a spot that was only about 3 weeks out but it was not easy to get that appointment.

                                The EKG and PFT appts. I had at an associated hospital in another town because my local hosp. was booking out almost 4 weeks on the EKGs and PFTs. The travel time on the appt. was 1 hour and 10 minutes total. The two appointments, in two different areas of the hospital, took a total of only 15 minutes.

                                Good luck !

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