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    Healing lesion question

    Ok seems my 1 lesion on brainstem which has caused about 3-4 of my symptoms like numbness, fine motor skills, walking and balance mostly. Now my walking is much better no cane needed) as I can do stairs without walls and railing now where as before... good luck not a chance. This shows that walking and balance does improve whereas the numbed areas and muscle tightness no change. Now I'm off steroids and symptoms either stay stable or very slightly improving so here my question:
    being stable or flare/lesion showing signs of letting up will sx's get better usually when a lesion shrinks and heals? Can they get re-aggravated and grow again?

    Thx

    #2
    Lesions may not shrink or heal. The active inflammation may subside, but the size of the lesion may remain the same. From my original diagnosis, one of my 12 lesions shrank a little 3 years after starting Tysabri . The rest all remained the same. All symptoms but right hand/arm numbness went away after initial relapse. Over time, some symptoms have returned and new ones appeared, remitted, and in one cases, came back, but the MRIs remain unchanged.

    Unfortunately, the answers you want aren't answers anyone can give. Focus on your therapy and the achievements you've made, and strategies to deal with the unknown an MS diagnosis brings. Wondering constantly on your recovery isn't healthy. Understandable when newly diagnosed, but you do need to accept that much is unknown and learn to accept and live with it. We continue to learn more, but no one can tell you if your symptoms will subside, nor the extent you will recover.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Originally posted by pennstater View Post
      Unfortunately, the answers you want aren't answers anyone can give. Focus on your therapy and the achievements you've made, and strategies to deal with the unknown an MS diagnosis brings. Wondering constantly on your recovery isn't healthy. Understandable when newly diagnosed, but you do need to accept that much is unknown and learn to accept and live with it. We continue to learn more, but no one can tell you if your symptoms will subside, nor the extent you will recover.
      Ditto to Kathy's post.

      Also, info from the National MS Society, Managing Relapses:

      Going into remission doesn’t necessarily mean that the symptoms disappear totally — some people will return to feeling exactly as they did before the exacerbation began, while others may find themselves left with some ongoing symptoms.

      https://www.nationalmssociety.org/Tr...aging-Relapses

      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


        #4
        Glad to hear you're moving in the right direction. I've read that your brain may actually re-route the signals around the scar tissue so your lesion may or may not be shrinking/healing. It's a scar so it probably won't hear per say although your symptoms will most likely continue to improve and may all but disappear.
        The future depends on what you do today.- Gandhi

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          #5
          Boudreaux brings up a good point on the brain and it's ability to compensate - plasticity is the term used to refer to this.

          My neuro recommended a book to me that I found a fascinating read. It is "The Brain that Changes Itself" by Norman Doidge. It was written in 2007.

          The whole area of brain plasticity study is growing, but still much to learn. And as technology advances, they are able to see in injured people, where the brain has compensated for the injury, and areas thought to control functions may be inactive, but another area has taken over.

          He has another book written later about the brain's healing ways. I haven't read yet.

          Thinking I may need to go back and read the book again. Trying to break a bad habit and there is a chapter on this, worries, obsessions, and compulsions. Need a refresher!
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Symptoms

            Originally posted by Boudreaux View Post
            Glad to hear you're moving in the right direction. I've read that your brain may actually re-route the signals around the scar tissue so your lesion may or may not be shrinking/healing. It's a scar so it probably won't hear per say although your symptoms will most likely continue to improve and may all but disappear.
            seems my walking and balance is ever so slowly recovering, surely muscle stiffness in my leg hinders my walking from returning to near normal and balance seems like it will take months to recover to a decent area, time will tell. I got till march/April 2018 to get to a point where I can drive and walk better for a return to work at least.

            one thing is that fatigue is very hard, especially in the AM hours along with muscle soreness and weakness. It makes even doing the simplest thing like cooking a omelette breakfast or dinner a huge undertaking but I get it done nontheless, I will ask my GP to prescribe medications for fatigue and muscle relaxant, is there any you guys recommend for fatigue and stiff muscles?

            Thx for all your replies, I'm having a hard time right now and pray that things get better.

            Comment


              #7
              Originally posted by Ant1981 View Post
              I will ask my GP to prescribe medications for fatigue and muscle relaxant, is there any you guys recommend for fatigue and stiff muscles?

              Thx for all your replies, I'm having a hard time right now and pray that things get better.
              If you have spasticity, Baclofen is is a med frequently prescribed. Stretching/Yoga is recommended.

              For fatigue, Amantadine, Provigil/Modafinil, Nuvigil, and Atricept are meds sometimes prescribed all with varying levels of success and side effects. Of course, they recommend healthy eating and exercise, within your abilities.

              I pray you find some peace, as I know you are struggling right now.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Fatigue was the lingering symptom for me as well. I spent months on the couch after work only to get up, eat, shower and go bad to bed.
                The future depends on what you do today.- Gandhi

                Comment


                  #9
                  Originally posted by Boudreaux View Post
                  Fatigue was the lingering symptom for me as well. I spent months on the couch after work only to get up, eat, shower and go bad to bed.
                  Im going to my GP and ask him about provigil as fatigue is becoming worse over the last couple days, does your fatigue come and go? Cause most my symptoms ease up from 3pm through bedtime, mornings are the worst. What do you do to manage your fatigue? Would drinking coffee help?

                  Comment


                    #10
                    Originally posted by Ant1981 View Post
                    Im going to my GP and ask him about provigil as fatigue is becoming worse over the last couple days, does your fatigue come and go? Cause most my symptoms ease up from 3pm through bedtime, mornings are the worst. What do you do to manage your fatigue? Would drinking coffee help?
                    I drink coffee all day long. I have read studies that coffee may help fight MS but alas YMMV. There wasn't anything I could do to manage my fatigue during the initial onset but sleep. Fatigue has came around from time to time and while it sucks sometimes you just have to rest.
                    The future depends on what you do today.- Gandhi

                    Comment


                      #11
                      Originally posted by Ant1981 View Post
                      Im going to my GP and ask him about provigil as fatigue is becoming worse over the last couple days, does your fatigue come and go? Cause most my symptoms ease up from 3pm through bedtime, mornings are the worst. What do you do to manage your fatigue? Would drinking coffee help?
                      How do you sleep at night? Have the steroids caused you sleep issues? Or do worries wake you up? If you aren't getting a good night's sleep, that could be contributing to the tough mornings. I know it does for me.
                      Kathy
                      DX 01/06, currently on Tysabri

                      Comment


                        #12
                        Sleep

                        Originally posted by pennstater View Post
                        How do you sleep at night? Have the steroids caused you sleep issues? Or do worries wake you up? If you aren't getting a good night's sleep, that could be contributing to the tough mornings. I know it does for me.
                        i sleep the best I have in weeks, compared to hospital stay over Halloween. I'm using trazadone sleep aid at times but I feel so Very dizzy and fatigued in the mornings right when I wake up. I also started a tecfidera titration at 240 mg (two 120 mg with breakfast and dinner). I was less fatigued before but showing up more and more now. All my other symptoms remain stable and my walking is greatly stable improving since paralyzed ankle+toes which steroids helped come alive to near
                        normal range of motion. I did see my GP and was prescribed baclofen for tight calf, lower quad, hamstring muscles that might improve walking even more, I will try. Balance is another symptom that is a tough one tho, I want to try yoga but want to get cleared to drive again, that would really uplift me. I guess I have to keep in hibernation mode all winter give everything time to adjust, keep up with physio next week, adhere to tecfidera schedules (0 side effects on 120 mg pills) and wait out these symptoms then see my neuro in feb and have an MRI. As for anxiety, it still creeps but I'll pursue some CBT from someone in hospital. Thanks for all your replies the make me feel supported as I am totally new to MS and don't know what to think, I really appreciate it guys, I'm remaining positive 🙏

                        Comment


                          #13
                          Hi Ant.

                          Originally posted by Ant1981 View Post
                          I did see my GP and was prescribed baclofen for tight calf, lower quad, hamstring muscles that might improve walking even more, I will try.
                          Just a FYI; Baclofen as well as many muscle relaxers can cause (more) fatigue/tiredness, but are helpful for spasticity (muscle spasms, tight muscles and the pain that comes with it).

                          What is also helpful for spasticity is gentle stretching exercises. The more you can stretch out your muscles the better, so this can mean multiple times a day. Your Physical Therapist(PT) can help in this area.
                          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


                            #14
                            I would make sure you tell your Doc that fatigue worse in An, seems to subside later. To me, it sounds like the Rx you are taking to help sleep may be playing a part in the fatigue and dizziness you are experiencing.

                            You don't want to automatically assume MS is behind your symptoms. Medication side effects can be the same as MS symptoms. So make sure your Doc has a clear picture of the symptoms. Provigil may not be the answer.
                            Kathy
                            DX 01/06, currently on Tysabri

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