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    #16
    Originally posted by marti View Post
    Can you tell me how you know you have damaged nerves? Is there a test that confirms that?
    What I was referring to is the damage in my cervical spinal cord. I have confirmed damage (lesions) in the c1-c2 area and the c5-c6 area. I had a cervical and thoracic MRI done in 2012. When I say "damage nerves" really the central nervous system is what I'm referring to that gets damaged from MS -

    from Google on central nervous system:
    the complex of nerve tissues that controls the activities of the body. In vertebrates it comprises the brain and spinal cord.

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      #17
      Originally posted by VikingKitty View Post
      What I was referring to is the damage in my cervical spinal cord. I have confirmed damage (lesions) in the c1-c2 area and the c5-c6 area. I had a cervical and thoracic MRI done in 2012. When I say "damage nerves" really the central nervous system is what I'm referring to that gets damaged from MS -

      from Google on central nervous system:
      the complex of nerve tissues that controls the activities of the body. In vertebrates it comprises the brain and spinal cord.


      Thank you. I was confused about the terminology.
      Marti




      The only cure for insomnia is to get more sleep.

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        #18
        SO TRUE FOR ME-HAPPY STRESS/EXCITEMENT =SAME MS RESPONSE

        As others have mentioned, in my case w MS, happy stress or excitement gives me the same unwanted MS worsening of symptoms as bad stress! For example, when my Mom had a major surgery, I was completely down for a 3 day recovery time (couldn't walk, all symptoms magnified 10X)! And the happy stress of my son's graduation and associated events, caused the same MS reactions! It is devastating and sometimes takes days to recover, no matter which type of intense emotions I experience. I dread family Christmas gatherings for this reason. Only those with MS can possibly understand this!

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          #19
          Originally posted by marie24 View Post
          As others have mentioned, in my case w MS, happy stress or excitement gives me the same unwanted MS worsening of symptoms as bad stress! For example, when my Mom had a major surgery, I was completely down for a 3 day recovery time (couldn't walk, all symptoms magnified 10X)! And the happy stress of my son's graduation and associated events, caused the same MS reactions! It is devastating and sometimes takes days to recover, no matter which type of intense emotions I experience. I dread family Christmas gatherings for this reason. Only those with MS can possibly understand this!
          And here's the thing - yes, it probably is just a "mere" pseudo-exacerbation, but seriously, it feels as bad as any "real" flare.

          Yes, maybe you can't see it, in terms of new lesions on an MRI, and maybe it goes away in a day or three or even an hour or two.

          But it's your old nervous system, slowly being stripped of myelin. Every pseudo-exacerbation I've ever had was a reminder of the past or was a sign of what was to come.

          Those tingly legs on a hot day, that went away after I sat down in the cool? Came back big time years later. And didn't go away.

          (Well, that was miserable, but so am I. 🙄 Many apologies. Hard to be sunny when there isn't any sun.)

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            #20
            Pseudo eventually becomes permanent

            Originally posted by Thinkimjob View Post
            And here's the thing - yes, it probably is just a "mere" pseudo-exacerbation, but seriously, it feels as bad as any "real" flare.

            Yes, maybe you can't see it, in terms of new lesions on an MRI, and maybe it goes away in a day or three or even an hour or two.

            But it's your old nervous system, slowly being stripped of myelin. Every pseudo-exacerbation I've ever had was a reminder of the past or was a sign of what was to come.

            Those tingly legs on a hot day, that went away after I sat down in the cool? Came back big time years later. And didn't go away.

            (Well, that was miserable, but so am I. 🙄 Many apologies. Hard to be sunny when there isn't any sun.)
            Agree. My minor "pseudo" symptoms w stress events 10 years ago are now permanent. The inability to walk for a few hours or couple days now after pseudo event, ... well, just a matter of time to be permanent. Unless, a drug to promote remyelination comes out and quick!

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              #21
              Yes indeed, Marie24.
              I'd go walking happily and my legs would start to tingle (20 years ago). Stiffen up; sit down; rest and all was fine. Not any more.

              Thighs, calves, feet - all the little pseudo stuff - it's here to stay.

              Only had one really bad flare - could not walk - fixed with steroids. I don't know whether every "pseudo" flare is just a sign that a little more myelin has gone, or is part of the problem.

              It doesn't happen each and every time. Sometimes I can deal with heat/ stress/ noise etc; sometimes I just fold. And it goes away, after a bit.

              I don't really believe in pseudo flares. I think they are mild attacks. Not a doctor, much less a neurologist. Just a long-suffering patient.

              It's not the lesions in your brain that matter so much as the myelin coating on your nerves.

              That would explain why my MRIs these days look much the same as they did when this horror show began, even though now I'm physically less than able.

              Anyhoo - all the best. And somewhere over the 🌈 there will be a "cure".

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                #22
                Yes yes

                That would explain why my MRIs these days look much the same as they did when this horror show began, even though now I'm physically less than able.

                Anyhoo - all the best. And somewhere over the 🌈 there will be a "cure".[/QUOTE]

                Agree. Also, I believe, even without new lesions, the old ones continue to break down surrounding tissue and axons (eventually leading to "black holes" showing on MRI) and think it becomes permanent. I've apparently not had new lesions in a few years, but, still get worse just the same. Memory & multitask is severely debilitating now. Best wishes! Oh and sorry, but my phone doesn't show me an option to just reply back, only option I see is "reply with quote" 🙂

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                  #23
                  Yep had no real change in mri's for 20 years except atrophy just lots more little things that are compounding and not going away.

                  Makes me wonder why young ones being diagnosed today, after reading all us oldies info wouldn't hit ms with the biggest gun they could to prevent as much damage as they can cause at some point they are gonna be like us in regards to progression?

                  I don't really believe in pseudo flares. I think they are mild attacks. Not a doctor, much less a neurologist. Just a long-suffering patient.--I agree T.

                  All the best Everyone.

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                    #24
                    Originally posted by Carolinemf View Post
                    Yep had no real change in mri's for 20 years except atrophy just lots more little things that are compounding and not going away.

                    Makes me wonder why young ones being diagnosed today, after reading all us oldies info wouldn't hit ms with the biggest gun they could to prevent as much damage as they can cause at some point they are gonna be like us in regards to progression?

                    I don't really believe in pseudo flares. I think they are mild attacks. Not a doctor, much less a neurologist. Just a long-suffering patient.--I agree T.

                    All the best Everyone.
                    I think, back in the day, they didn't want to scare us too much, too soon.

                    Lord knows I was scared to death, expecting the worst, praying for the best from the start.

                    If they'd said,"Right, this is like cancer; you need to take this risky but much more effective drug", I'd have done it.

                    Of course, those hard-core drugs weren't available way back then. And after 20 years of the other stuff, I've had enough.

                    Time for the NMSS to ramp it up and to tell people to hit it as hard and fast as you can.

                    To think a fear of needles was enough reason to choose which drug might help a disease like MS.

                    Hey ho. 🙄

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                      #25
                      Originally posted by Carolinemf View Post
                      Yep had no real change in mri's for 20 years except atrophy just lots more little things that are compounding and not going away.

                      Makes me wonder why young ones being diagnosed today, after reading all us oldies info wouldn't hit ms with the biggest gun they could to prevent as much damage as they can cause at some point they are gonna be like us in regards to progression?

                      I don't really believe in pseudo flares. I think they are mild attacks. Not a doctor, much less a neurologist. Just a long-suffering patient.--I agree T.

                      All the best Everyone.
                      It's fear. You're 26; you don't feel too bad - numb finger, tingly feet - you can take Tysabri (PML) or Gilenya (tablet, but PML, dicky ticker) or you can have nice mild Copaxone.

                      Lemtrada should probably be the go to treatment.

                      It's MS. It's about as serious as it gets. But we all want to keep on keeping on, hoping for the best.
                      Encouraged, mind you, to do so, by many a doctor.

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                        #26
                        Yep, you nailed it!!!

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                          #27
                          Originally posted by Thinkimjob View Post
                          If they'd said,"Right, this is like cancer; you need to take this risky but much more effective drug", I'd have done it.

                          Of course, those hard-core drugs weren't available way back then. And after 20 years of the other stuff, I've had enough.

                          Time for the NMSS to ramp it up and to tell people to hit it as hard and fast as you can.
                          It's not quite like cancer, but the same considerations should apply -- stop it before it gets any worse, whatever it takes!

                          I had inoperable lung cancer and maximum chemo & radiation back in 1996 at age 40, followed by a metastasis, surgery & more radiation 2 years later. Then last year I got lung cancer again, had a lobe removed, and more chemo.

                          Most of my doctors think that both my (mild) MS and my second lung cancer were 'triggered,' or at least made much more likely, by the harsh treatment I got in '96. My onc tells me I'm not his only return patient, and he knows he's partly responsible for their return, but we both agree that the good years have been a pretty fair trade, considering...

                          Even if the new DMTs only delay the progression, I'd jump all over them if I was younger.
                          1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
                          NOT ALL SX ARE MS!

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