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Waiting Room at the MS clinic...EEEK!

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    #16
    Over 60 and doing well

    Just want to share with Jules that I'm a 63 year old woman who was dx'd with MS at age 30 and is still doing well! I had several debilitating attacks in the first 10 years, and what I consider a miraculous remission for almost 20. In the last few years I've had other health problems, including 4 operations, and new problems with MS. But after almost a year of not being able to walk in a straight line or keep my balance, I'm finally feeling like I'm in remission again. I thought for sure my MS had finally advanced to secondary, but now I'm not so sure.

    BTW, I've never had treatment other than steroids during that first decade.

    Betsi

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      #17
      Originally posted by lstrl View Post
      It creeps me out every time I go to the MS clinic. Both times I've been there recently, I've been the only one who doesn't use some kind of walking aid. It did appear that I was the youngest, but no matter how good I feel, it scares me that I'm looking at my future. It's hard enough dealing with what MS has thrown my direction. It only makes it worse looking at what may be the future. At this point, I'm not willing to accept that.
      On the flip side, people with better mobility tend to look at me when I'm at the MS clinic. I use a rollator and look very, very young for my age. If my spasticity is bad then I function even worse. The looks I get range from "poor girl", to sort of frightened because I am sure they are scared they will progress. No one with better mobility ever chit chats with me. It actually makes me pretty uncomfortable and self conscious.

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        #18
        Originally posted by Betsi View Post
        Just want to share with Jules that I'm a 63 year old woman who was dx'd with MS at age 30 and is still doing well! I had several debilitating attacks in the first 10 years, and what I consider a miraculous remission for almost 20. In the last few years I've had other health problems, including 4 operations, and new problems with MS. But after almost a year of not being able to walk in a straight line or keep my balance, I'm finally feeling like I'm in remission again. I thought for sure my MS had finally advanced to secondary, but now I'm not so sure.

        BTW, I've never had treatment other than steroids during that first decade.

        Betsi

        Thanks Betsi and I hope you continue to improve! That sounds like a rough 30 years though. Have you been able to remain at work? That is my biggest concern.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

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          #19
          Jules, I was a housewife when I was diagnosed, went back to work part-time 8 years after diagnosis. From 1993 until 2008 I worked mostly full-time. It was difficult at times due to fatigue, but my jobs were sedentary so it wasn't too bad. When I stopped working it was because of other health problems. I had severe diverticulitis and had surgery followed by peritonitis and a temporary colostomy. I suspect that my GI problems are related to my MS but my doctors aren't convinced.

          Anyway, I'm happy to be feeling better and to stay retired. I write fiction, and have had many short stories published in Woman's World magazine, so I feel like I do make a contribution to our household income.

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            #20
            On the flip side....

            MissLux, THANK YOU for bringing up the flip side....

            I, too, am one of the patients in the waiting room that you are referring to (Hello - we're in the room!!!).

            I'm not offended, on the contrary, I think we (all of us - regardless of "type" of MS) need to acknowledge the segregation of communities by "types" of MS. For those of you with "benign" or RRMS (and currently remitting), I'm honestly happy for you. But guess what - you won't catch SPSS/PMSS by acknowledging us. I suppose I'm more surprised by [benign/RMSS] MSers who don't want to socialize with SPSS/PMSS. I know you worry "that could be me"....but guess what, I was once you.

            I'd like to understand this more....please share your thoughts.

            Note to moderator - would love for this to also be posted on the PMSS/SPSS board to engage in conversation if possible.

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              #21
              You're welcome Debbie.

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                #22
                Originally posted by DebbieB View Post
                Note to moderator - would love for this to also be posted on the PMSS/SPSS board to engage in conversation if possible.
                Debbie - I am more that happy to move this for you. I assume you mean taking just your post and starting a new thread in the SP/PP forum? I'll wait for your answer.
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

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                  #23
                  I have a bad habit of being a people watcher, so I tend to notice everyone who walks in, whether it's in the MS clinic or somewhere else. I'm more introverted around people I don't know, so I'm not one to strike up a conversation with someone in the waiting room, but I certainly wouldn't keep quiet if someone started a conversation with me. I actually think it would be very interesting to talk to someone (in real life, I've never actually met anyone with MS that I know of) who has had the disease longer than me.

                  Misslux, it is interesting that you say you're self conscious around those who have better mobility than you because, as one of the people who currently has better mobility than a lot of MSers, I'm also very self conscious in that clinic. It's not just other patients who I'm afraid will look at me and wonder why I'm even there (although that has entered my mind), but I'm also afraid the medical personnel won't take me seriously because I'm not one of those people who requires a cane at this point.

                  Sorry to go off on a bit of a tangent, but I really felt like I wasn't taken seriously enough when I saw my dr's PA at my last visit a few weeks ago. My walking speed increased by a second, so he saw improvement. It was first thing in the morning, while my appt before was in the afternoon, so I wasn't as refreshed. Walking 5 feet in a small room won't always produce my loss of balance that I randomly get or my legs giving out on me, causing me to almost hit the floor. It also won't show how, when my legs are tired, I can barely walk (which is absolutely not okay with me because I never used to be like that).

                  Also, even though my new symptoms show otherwise, he seems to think the Avonex has caused my case to be benign for now because my MRI results show improvement in the brain and no change in the c-spine (there are so many lesions in the c-spine though, I'm not sure if it would be noticeable if a new one did pop up if it's no longer enhancing). So, even though I'd been feeling worse at the time, he thought I was doing great because on paper, things looked wonderful.
                  Diagnosed 1/4/13
                  Avonex 1/25/13-11/14, Gilenya 1/22/15

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                    #24
                    Originally posted by DebbieB View Post
                    I'm not offended, on the contrary, I think we (all of us - regardless of "type" of MS) need to acknowledge the segregation of communities by "types" of MS. For those of you with "benign" or RRMS (and currently remitting), I'm honestly happy for you. But guess what - you won't catch SPSS/PMSS by acknowledging us. I suppose I'm more surprised by [benign/RMSS] MSers who don't want to socialize with SPSS/PMSS. I know you worry "that could be me"....but guess what, I was once you.
                    We get treated "that way" too. A girl at a party, I'm not sure if she was grossed out by disease in general or had it confused with weaponized ebola, couldn't get away from me fast enough. My ex (and we've only had barrier intimacy for BC) contacted me to ask if it was an STD. "I'd get tested as soon as possible," I said. "What if I have it"? "Ten year latency period, re-test then if negative." You're welcome ladies, what a catch! /sarcasm

                    People up here seem kinda moody and keep to themselves, so I follow suit, although someone sitting next to me I will generally try to talk to. Lately though I don't talk as much, sometimes it seems to drain energy and I'm afraid I'll slur my speech or grasp for a word and the person will think I'm an idiot. I wonder if other people with MS feel that way, that it's exhausting to talk.

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                      #25
                      No, I meant it makes me uncomfortable at the MS clinic when there are other people there (complete strangers) who chat with each other and don't bother asking me how long I'd had MS, what meds I'm on, which Dr. I'm seeing, etc. I'm very friendly too and say hello to everyone. It's like they don't want to know/hear about my progression. It's not normal people watching. It's usually either pity or scared/nervous.

                      The only people who really chat with me about these things are people with the same or more advanced mobility issues.

                      As for your doctor and PA, stay vigilant so they take you seriously!

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                        #26
                        Seasha

                        Hi Seasha, Let's leave it here for now and see if there's any dialogue.

                        I may start a new thread in the PMSS/SPSS room tomorrow.

                        Thanks!

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                          #27
                          I had an MS specialist near Chicago for over ten years. His waiting room had very advanced patients, and my husband also wondered if I would end up the same way. My doctor always said that I make him look good because I continued to look so healthy.

                          Most of us may not get so disabled but it can help to keep us humble and grateful for what we still have.
                          Take care, Wiz
                          RRMS Restarted Copaxone 12/09

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                            #28
                            Originally posted by Betsi View Post
                            Just want to share with Jules that I'm a 63 year old woman who was dx'd with MS at age 30 and is still doing well! I had several debilitating attacks in the first 10 years, and what I consider a miraculous remission for almost 20. In the last few years I've had other health problems, including 4 operations, and new problems with MS. But after almost a year of not being able to walk in a straight line or keep my balance, I'm finally feeling like I'm in remission again. I thought for sure my MS had finally advanced to secondary, but now I'm not so sure.

                            BTW, I've never had treatment other than steroids during that first decade.

                            Betsi
                            Me too! So there are at least a few of us oldsters who are doing OK.

                            I am 62, had MS since I was 24 years old. I love my work and work full-time. I have issues with annoying symptoms that are mostly invisible (fatigue that responds well to Provigil, frequent UTI's due to incomplete ladder emptying, right leg/foot weakness, so I don't do long walks) so I am not subject to a lot of rude questions at work or with friends.

                            My MS specialist is in a two doctor practice that runs pretty efficiently, so there is rarely anyone else in the waiting room. If there are others waiting, I talk to them if they want to talk (sometimes other people clearly do not wish to chat), regardless of how sick or healthy they look.

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                              #29
                              Good morning,

                              I think most people that who remain healthy are not on the MS website and have no need to be followed by an MS specialist. (there on Facebook and twitter) MS or not, most people go to the doctor when they are sick. So for me, the doctors office does not fairly represent the range of disability in any condition. It's like going to the er and feeling like everyone in the world must be sick.

                              However, I think all of us, especially those that feel others don't understand how we feel or know how we struggle, or have felt isolation, should reach out to each other. We should seek opportunity to show kindness and understanding. It could be just what that person needs!

                              Most of us agree that we can not make MS the topic of every conversation, even though we may be suffering invisible symptoms. So meeting someone else and giving each other a time to talk about things with someone who understands should be a priority.

                              I think that there is a wealth of information to be shared by those experienced with longstanding MS. Let's stop being self conscience with each other and accept the others value as a human being. The person in the waiting room is not there to scare you or to make you feel better. That is something you do for yourself.

                              When I see someone struggling, I often say a prayer for them. Not out of pity, just that they have strength to deal with their life and that they can still find the joy that is in the day. Crappy day or not, the sky is still blue and on cool days, the sun rays are a welcomed treat. And I am grateful for whatever abilities that I have. Gratitude over fear! and when you fear tomorrow, let it make us all take advantage of today.

                              Comment


                                #30
                                Originally posted by Mable View Post
                                Wow Tawanda,

                                As I recall, you were feeling kind of blue these past few days already. Just what you needed, huh?

                                Since I've been diagnosed, I always ask my friends to introduce me to anyone they know with MS. The result is that I meet a lot of MSers who aren't hanging around MS clinics or forums.

                                It turns out a LOT of women in their 50s, 60s, and 70s are doing pretty good with MS. No canes. No slurred speech. A lot of fatigue, though.

                                One was a man my age in a wheelchair and clearly cognitively impaired (which caused me to go home and cry for a couple days). But the rest were doing relatively great.

                                I try to think of my collection of MS women when I get the "yikes" from too much scary MS socializing.

                                Hope you're feeling a little brighter by now.
                                Thank you. Really, I get it...don't like it, but I get it. Not all of us are candidates for "Dancing With The Stars." The waiting room was scarier when I was a Newbee, but back then I was seeing a general neurologist as opposed to an MS Specialist. Maybe general neuros. deal generally deal with milder cases than an MS Specialist. Plus I could never be sure what a fellow patient was in there for. Could be a migraine headache. At the MS Specialist, they all have MS for sure...
                                Tawanda
                                ___________________________________________
                                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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