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    Dr. Looked Concerned

    I had a routine visit with my MS doctor yesterday. Usually, we just go over my list of issues, do my walking tests, eye exam and done. Yesterday, I could not do any of the walking tests right. My balance is the worst it's ever been (I use a cane). I told him about the weakness I have developed in my right leg. I have to guide it into a pant leg when I get dressed. I'm losing my balance in the shower. I'm choking on food and at times, cannot swallow.

    This is the 1st time he has ever looked genuinely concerned that it's progressing. I have RRMS. Have had it for at least 15 years. He wants a new MRI, bloodwork, and some PT. The reality of MS smacked me right in the face. It's been stable for so long. I'm only 51. I'm scared.

    I know some of you have it so much worse than I do. I apologize for complaining. I guess I just thought I'd have several more years before I started to decline. Thanks for making your way through my rant.

    #2
    I'm sorry for your declining abilities.

    Here's something to try. It may not be your MS. My abilities were declining regularly too. And, some of it was my MS. I've transitioned from RRMS to SPMS in the last few years, I think. I have much less stamina for walking, standing, etc. My balance isn't great; I started using a cane when I leave the house about two years ago. I need it for things like walking on uneven ground, going down curbs, etc.

    But, what you said about guiding your right leg into your pant leg made me wonder. I didn't need to do that, exactly, but, I'd almost have to lift my leg with my hand to get it high enough to get into the car.

    My MS Specialist didn't suggest anything other than MS. She thought it was my hip flexor muscles.

    But, my functional medicine doctor did. He agreed that it was my hip flexor muscles, but wondered if it was just something that needed a simple chiropractic adjustment. I made the appointment. The chiropractor said my hips were very much out of alignment. One hip was way too far forward; the other hip was way too far back. He did one adjustment and it was so much better. That was in November. It only took one appointment, so it wasn't costly. It's still better.

    You might want to consider a chiropractor appointment and see if part of your decline just needs a simple adjustment.
    ~ 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


      #3
      Originally posted by kittysmith View Post
      He wants a new MRI, bloodwork, and some PT. The reality of MS smacked me right in the face.
      Hi Kittysmith,

      I never try not to read much into facial expressions or body language, too much opportunity for misunderstanding. Often seeing the worst rather than what is at hand.

      Actions speak louder and your doctor certainly acted (MRI, bloodwork and the PT). This is a good thing. More information will allow him to direct a course of treatment that addresses your current sx.

      There isn't much I can say in facing the reality of our illness other than it is our illness and how we deal with it, our choice. Along with the compassion of your doctor and your own self-reliance you will continue.

      I try to say a few prayers daily for all of us, you're in there Kittysmith.

      Comment


        #4
        Hi kittysmith.

        We all have our fears since MS is so unpredictable. Try not to jump too far ahead. It is really hard not too sometimes.

        A few years ago, I was starting to wonder if I needed a cane. My balance was worse, had falls, had to sit to put pants on, etc... My neuronoted a clinical decline in my balance on 2 consecutive exams. I discussed with neuro, and went to PT for gait and balance. It helped tremendously. Like mamabug, had hip flexor issues. I also hadn't been prioritizing exercise like I needed to, so my legs weren't as strong.

        Part of my issue is that since my gait was off, I had some muscle imbalance, which was leading to weakness and my instability. I went to PT 3x/ week for 3 months and continue to do some of the exercise at home 2x/ week and try to walk daily to keep up leg strength. Can I walk as far and fast as I did 5 years ago? No, but I stabilized.

        I just saw my new neuro yesterday and he said to keep walking. Do all I can to maintain strength. I had fallen twice over the holidays, once tripping, the other, not sure why. He was a little concerned since he said my leg strength was good and my balance was also good. So if I fall again without a normal reason, he said he may want a vestibular therapist to check me out.

        So it may or may not be MS. PT will give you a better idea. Even then, time is what will tell. Please don't give up. I also like the idea of a chiropractor.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          MS Doc

          I am fortunate enough to work for the hospital. I get a bit more inside information than your average patient. I know him well enough to know he was definitely concerned. I'm not going to panic. I'm just going to do what they tell me to do.

          A few minutes ago, I got a call from the clinic telling me my LFT's were too high to stay on Plegridy. I was not expecting that. I haven't been on it very long, so, this will be my 4th DMD switch.

          Anyway, I'm good. Sorry to be a complainer. It'll work out the way it's supposed to. Take care everyone. Thanks for your input.

          Comment


            #6
            Hi kittysmith,

            Sorry about your decline in abilities and that you will need to switch your DMT again. I hope whatever you switch to will stabilize your MS.

            Please get a shower chair ASAP. Losing your balance in the shower is dangerous. I broke my hip after falling in the shower.

            The benefits of physical therapy for MS can't be stressed enough. Occupational therapy as well.

            Impaired proprioception might be a contributing factor to your balance issues. Proprioception is the ability to determine your body's position in space when you can't see. We all close our eyes at some point during our shower. Here's a good article explaining it: https://www.verywellhealth.com/propr...erosis-2440810

            If that's determined to be the case for you, physical therapy can teach you ways to improve it. One of ways to PT does this is using video games with a balance board (Nintendo Wii). As long as you are keeping your balance, it's kinda of fun!

            An occupational therapist can teach you easier ways to get dressed based on your needs. Might sound silly, but they do have some very good ideas. He / she can make recommendations of ways to make showering safer, and work on balance as well.

            A speech and language pathologist can teach you ways to improve your swallowing. He / she will also order some tests to determine what's going on when you swallow. I believe this would be very helpful for you.

            Yes it's scary but don't loose heart yet!

            Take care and best wishes.
            Kimba

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

            Comment


              #7
              Kitty... I feel so bad to hear about this progression for you. I know I live in fear of those new things that crop up.

              Seems like you've gotten some good advice here already and I don't know what else to tell you except that I am sorry for you and am thinking of you. Our bodies sure have a way of turning on us!

              Do you think it might be time to think about cutting down on work hours and responsibilities? I asked my former employer to do that and I went on to continue to work for several years until I couldn't handle it anymore. But, fewer hours and an easier job kept me in the game for awhile.

              Best to you Sister.
              Marti




              The only cure for insomnia is to get more sleep.

              Comment


                #8
                Hi kittysmith,

                I forgot to add this link as well https://www.healthline.com/health/body/proprioception

                You might recognize some of the tests mentioned in it from your neuro exams. I know I do!
                Last edited by Seasha; 02-01-2020, 12:38 AM. Reason: per request
                Kimba

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

                Comment


                  #9
                  Hi. First post here.

                  My doctors appear horrified / scared /freaked out / terrified every time they see me.

                  It usually starts with the nurse doing all the vitals checks.

                  It's a special skill set to make seasoned medical professionals uncomfortable with what they're seeing. Count yourself among an elite group of patients, "The Confusers".

                  Point is... One does not need input from others to know how one feels.

                  Please understand my tone is not intended to be dismissive or to trivialize your concerns. I'm coming from the standpoint of a person that routinely and regularly has grand and dramatic "episodes" in public. If I aligned my mood and temperament to the looks, stares, sad eyes, pity glances, concerned looks, and gawking I'd be a mess. I feel how I feel regardless of how others look at me or what they say.

                  Determine yourself how you feel. I'm not speaking of some silly "mind over matter" nonsense. MRIs don't lie. You can't think away demyelination. However, you can do you own "ability inventory" or body scan. Here's what I do:

                  1 Pause. Sit or lie down (or, if already fallen on ground, just lie there)

                  2 Ask yourself some question:
                  -- Where is my pain level?
                  -- How is my breathing?
                  -- Where is my irritation / frustration / 'bout to lose it level?
                  -- Am I hungry, thirsty?
                  -- How long since I've prayed?

                  3 Give each question an answer between 1 - 10 to indicate where you are on the good / bad scale.

                  4 What's your score?

                  I have these 5 areas that I review. If my score is over 25, I pray with my eyes closed while doing slow deliberate breathing. Scan again. Rescore. Only after 2 back to back scans with a pause and reboot in-between can I get a real snapshot of how I'm doing. If score is still over 25 I either medicate, lie down, eat, drink... Whatever. I've gone weeks at a time over 40 and lived wonderfully sub-15 for days at a time.

                  Once you have your score do what you can to get the number lower. Determine what score is acceptable for getting showered and dressed, what score is "stay home", what score is "stay in bed", what score is "call for help". Did you ask your doctor if it was OK to get showered and dressed this morning? Did you ask your doctor if you should go to the grocery store? No. You know what you're capable of.

                  Doctors can read test results, make physical observations and analyze data however, no one can tell you how you feel. That's your job and yours alone.

                  With all due respect to all doctors everywhere, screw 'em. They can tell me what's wrong with me but can not control my mood nor my outlook.

                  I've lost enough control over my life to concede my outlook to the facial expressions and body language of a doctor.

                  I wish the OP the same freedom of thought.

                  Comment


                    #10
                    Originally posted by Plinky View Post
                    Hi. First post here.
                    Welcome, Plinky. I hope you'll be back.

                    Please consider starting a new thread and introducing yourself here: https://www.msworld.org/forum/forumd...About-Yourself!
                    ~ 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

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