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Progressive symptoms vs. Time

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    #16
    Originally posted by jjs View Post
    That sounds a lot like what I'm going through except there have been times of sudden issues. Looking back now, I'm not sure if the sudden issues were true relapses or pseudo. Things always get a lot worse when my work load or stress load is too high.?
    Good point about true relapses and pseudo. When I get overheated (fever, core body temperature increase from activity, etc.) I can suddenly lose my ability to walk/move. But when I cool down, back to where I was. When I have an infection (urinary tract, virus, etc) I get sudden symptoms, but again, when infection resolves, back to where I was before the infection. Stress, lack of sleep, and overactivity can also temporarily increase my symptoms. But this is not relapse.

    Originally posted by jjs View Post
    What's too high? Sometimes it's hard to know until it's too late. I used to be so strong and capable. Now I cannot commit to anything - and I really mean that. There's absolutely no way I could have a job. I'm doing all I can to keep up with regular house work and my chores, and sometimes not even that (like tonight my daughter has to do my chores because I cannot walk - I knew I was having issues today because of recent stress so I took it easy all day until this afternoon. I thought I had rested and was well enough to make a batch of soap but I was so wrong!!!!).
    It took awhile for me to learn how to manage my loss of strength, energy, and physical stamina. I worked for 5 years after dx, but was fortunate to get a light duty job - until that was no longer doable either.

    Originally posted by jjs View Post
    After I knew the drs were saying MS, I was able to look back over the years and see that a few issues I had for several years were getting worse and are MS. Like my feet hurting ... so bad they feel like they should explode. This started in my early twenties I think. And extreme fatigue for no apparent reason - after doing normal things. I used to think it was blood sugar issues but now I know it's not.

    Anyway, there's never really been a break. Never a time since the symptoms became obvious that I thought, "Hey, I feel like my old self again!" So for the last 5 or 6 years I just get worse. BUT within the last year I have felt "better" - but I honestly think it's because I have finally learned (for the most part!) how to manage things and have cut my schedule and responsibilities down to nearly nothing and have a backup plan (I have THE BEST support system). I am no longer expecting to go back to my old self. My right side will never get better. My face, hand, arm, leg and foot will always be weak and tire quickly. My memory will always be bad. My feet will always hurt. My speach will always decline when I'm tired. And so on. This is me ... and I'm getting worse, not better ... and that's ok.
    I too have times of feeling "better", and times of plateau (whereby everything seems the same for awhile). But for the most part it's been a gradual progression for me, without relapses.

    I have right sided weakness also, which is not uncommon in PPMS.

    Originally posted by jjs View Post
    Rambling but just needing to talk right now I guess.
    You can talk all you need to.

    Originally posted by jjs View Post
    Is that place in Cleveland the best? How do you get an appointment there?
    My neuro referred me there to confirm of my diagnosis, as I'm only a couple hours away from Cleveland. The Mellen Center is one of the largest programs for MS care and research worldwide. Not sure what state you are in, but there are several MS centers in the US.

    Anything else on your mind, feel free to post.
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #17
      Originally posted by KoKo View Post
      Good point about true relapses and pseudo. When I get overheated (fever, core body temperature increase from activity, etc.) I can suddenly lose my ability to walk/move. But when I cool down, back to where I was. When I have an infection (urinary tract, virus, etc) I get sudden symptoms, but again, when infection resolves, back to where I was before the infection. Stress, lack of sleep, and overactivity can also temporarily increase my symptoms. But this is not relapse.



      It took awhile for me to learn how to manage my loss of strength, energy, and physical stamina. I worked for 5 years after dx, but was fortunate to get a light duty job - until that was no longer doable either.



      I too have times of feeling "better", and times of plateau (whereby everything seems the same for awhile). But for the most part it's been a gradual progression for me, without relapses.

      I have right sided weakness also, which is not uncommon in PPMS.



      You can talk all you need to.



      My neuro referred me there to confirm of my diagnosis, as I'm only a couple hours away from Cleveland. The Mellen Center is one of the largest programs for MS care and research worldwide. Not sure what state you are in, but there are several MS centers in the US.

      Anything else on your mind, feel free to post.
      Thanks again! I called a few MS centers (Mellen and Mayo) - neither offer financial help to out of state patients.
      So, I got in touch with the neuros I've been seeing and the MS neuro ordered an EMG. We'll see how that goes - did you have one?
      Our situations do sound quite similar. I'm just ready to get to the bottom of this, but my neuro is 4 hours away and travelling like that wipes me out! Of course I don't do any of the driving but then I have to have other people miss work and rearrange their schedules for what has so far been a wild goose chase!!
      Oh well ... what else can one do? I'm so thankful for all the love and support I have.
      Thanks again ... will be in touch.

      Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
      Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
      EDSS of 5.5, sometimes 6.0

      Comment


        #18
        Long reply

        I remember trying to get some sort of timeline as to what to expect in this MS journey. And I remember a lot of fear.

        That was back on February 25, 2005. Originally diagnosed with R/R in the beginning but after the first year, it was decided that I am Primary Progressive since I never went into remission. Most are conservatively diagnosed this way. I was seen by the best of the best in Phoenix. Plus my brother is a neurologist so I trust the information I have been given.

        I had had symptoms prior to the diagnosis. I ignored them and ignorance was bliss. I might have not run around and lived the life I had.

        I remember a physical test I was being given after the five year mark. My neurologist said he was surprised I was not in a wheelchair full time by then. I used to read about fellow MSers who talked about the locations of their lesions and although I knew I had both brain and spinal lesions, when I would ask, the doctors' replies were evasive saying location is not as important as addressing the symptoms.

        Finally this year I learned why the feedback was so obscure. There is a rating system based upon the number of lesions. One through five, five through ten, ten through fifteen. After fifteen, stop counting.

        I am in the final category.

        in terms of what that meant/means, it no longer matters. I don't look to the future. I wake up and take care of the day.

        i went from playing tennis to now, a wheelchair full time. It took about ten years. I still have muscle memory in my dreams and when I realize I am walking in my REM sleep, there is a certain joy.

        So I counsel you take it one precious moment at a time. Husband and I did buy some future items that I am glad I own...a fancy tempur-pedic bed that has a bed clicker to raise the head of the mattress. Firm is better than soft for when it gets challenging to simply roll over. Second was a bidet. It was the one that replaces the toilet seat. The electric mechanism can be either simply plugged into an existing outlet or a certified electrician can install an outlet for about $100. I love my bidet! Smart purchase.

        as I said, one moment at a time.

        Comment


          #19
          Originally posted by Aarcyn View Post
          I remember trying to get some sort of timeline as to what to expect in this MS journey. And I remember a lot of fear.

          That was back on February 25, 2005. Originally diagnosed with R/R in the beginning but after the first year, it was decided that I am Primary Progressive since I never went into remission. Most are conservatively diagnosed this way. I was seen by the best of the best in Phoenix. Plus my brother is a neurologist so I trust the information I have been given.

          I had had symptoms prior to the diagnosis. I ignored them and ignorance was bliss. I might have not run around and lived the life I had.

          I remember a physical test I was being given after the five year mark. My neurologist said he was surprised I was not in a wheelchair full time by then. I used to read about fellow MSers who talked about the locations of their lesions and although I knew I had both brain and spinal lesions, when I would ask, the doctors' replies were evasive saying location is not as important as addressing the symptoms.

          Finally this year I learned why the feedback was so obscure. There is a rating system based upon the number of lesions. One through five, five through ten, ten through fifteen. After fifteen, stop counting.

          I am in the final category.

          in terms of what that meant/means, it no longer matters. I don't look to the future. I wake up and take care of the day.

          i went from playing tennis to now, a wheelchair full time. It took about ten years. I still have muscle memory in my dreams and when I realize I am walking in my REM sleep, there is a certain joy.

          So I counsel you take it one precious moment at a time. Husband and I did buy some future items that I am glad I own...a fancy tempur-pedic bed that has a bed clicker to raise the head of the mattress. Firm is better than soft for when it gets challenging to simply roll over. Second was a bidet. It was the one that replaces the toilet seat. The electric mechanism can be either simply plugged into an existing outlet or a certified electrician can install an outlet for about $100. I love my bidet! Smart purchase.

          as I said, one moment at a time.
          Thank you for sharing your story!!!! You are right - one day at a time is all we can do.

          I recently had a cold and for the first time in my life I felt physically vulnerable. I mean ... of all the things I've been going through, I've never felt like "this could be the death of me" but I've been so weak ftom MS and then got a cold on top of it. But I made it through

          Anyway. I got the EMG which came back normal. I read online that it's normal for MS patients to have a normal EMG. Now they want me to go talk to the neuro that did the EMG but I'm not sure why. I don't think they realize how hard it is for me to make the 8 hour trip and appointment. I'm going to email my neuro and ask if there's another option (like skype?!)

          Walked on the treadmill today. Just felt like I needed to MOVE. 1/2 mile in 20 minutes, dragging my right leg and holding on the whole time. I used to be the pace setter for a group of about 300 men and women in our 8 mile runs. Now I can't even walk a half mile in 20 minutes without holding on and wearing my right side out the rest of the day!!

          I will remember your advice about the bidet. Honestly I don't know why they aren't standard fixtures here?!

          Thanks again to you both for sharing and encouraging.

          Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
          Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
          EDSS of 5.5, sometimes 6.0

          Comment


            #20
            Hi JJS,

            Thanks for the update although I guess it's not an official one since you don't have a diagnosis yet. Neither do I. Most frustrating experience ever.

            My update: I had a spinal. Came back clean (can't remember if I told you that or not). And then one day I was looking through the records and cd's that I have of my MRI"s and I noticed my last one was done on the incorrect MRI machine. My doctor ordered a brain MRI on a telsa 3 and not the normal 1.5 MRI machine. After a bunch of hogwash, they sent me back for another MRI which shows a clearer picture of the lesions I have. The weird part is that I've had three on my brain and all three mention that my lesions are in different spots in my brain. This one, I had a few more, kind of predictable since it IS a better machine.

            There are two things which bother me on the radiologists report: 1) that my lesions are atypical of MS and 2) that my disease is mild.

            Now, I've studied a million other diseases yet I cannot find one disease that is specific for the lesion location that I have (besides MS). And the number 2 one truly made me laugh.. at first. Then I got mad.

            I now use a cane, each and every morning and I use it throughout the day when my legs get tired and heavy (usually by 12:00pm) or when I have to walk far (anything over a 1/2 mile). I can't walk up hills, nor down, now and steps will wipe me out for awhile.

            Mild?

            Pfft.

            I requested that my doctor take a look at my entire file, to actually and physically LOOK at all three of my brain MRI's at least and to tell me what the heck I have. Right now, he's 98% sure I have MS. But that 2% is absolutely killing me.

            I hope you're doing better than me.




            Originally posted by jjs View Post
            Thank you for sharing your story!!!! You are right - one day at a time is all we can do.

            I recently had a cold and for the first time in my life I felt physically vulnerable. I mean ... of all the things I've been going through, I've never felt like "this could be the death of me" but I've been so weak ftom MS and then got a cold on top of it. But I made it through

            Anyway. I got the EMG which came back normal. I read online that it's normal for MS patients to have a normal EMG. Now they want me to go talk to the neuro that did the EMG but I'm not sure why. I don't think they realize how hard it is for me to make the 8 hour trip and appointment. I'm going to email my neuro and ask if there's another option (like skype?!)

            Walked on the treadmill today. Just felt like I needed to MOVE. 1/2 mile in 20 minutes, dragging my right leg and holding on the whole time. I used to be the pace setter for a group of about 300 men and women in our 8 mile runs. Now I can't even walk a half mile in 20 minutes without holding on and wearing my right side out the rest of the day!!

            I will remember your advice about the bidet. Honestly I don't know why they aren't standard fixtures here?!

            Thanks again to you both for sharing and encouraging.

            Comment


              #21
              Originally posted by ShellsBells View Post
              Hi JJS,

              Thanks for the update although I guess it's not an official one since you don't have a diagnosis yet. Neither do I. Most frustrating experience ever.

              My update: I had a spinal. Came back clean (can't remember if I told you that or not). And then one day I was looking through the records and cd's that I have of my MRI"s and I noticed my last one was done on the incorrect MRI machine. My doctor ordered a brain MRI on a telsa 3 and not the normal 1.5 MRI machine. After a bunch of hogwash, they sent me back for another MRI which shows a clearer picture of the lesions I have. The weird part is that I've had three on my brain and all three mention that my lesions are in different spots in my brain. This one, I had a few more, kind of predictable since it IS a better machine.

              There are two things which bother me on the radiologists report: 1) that my lesions are atypical of MS and 2) that my disease is mild.

              Now, I've studied a million other diseases yet I cannot find one disease that is specific for the lesion location that I have (besides MS). And the number 2 one truly made me laugh.. at first. Then I got mad.

              I now use a cane, each and every morning and I use it throughout the day when my legs get tired and heavy (usually by 12:00pm) or when I have to walk far (anything over a 1/2 mile). I can't walk up hills, nor down, now and steps will wipe me out for awhile.

              Mild?

              Pfft.

              I requested that my doctor take a look at my entire file, to actually and physically LOOK at all three of my brain MRI's at least and to tell me what the heck I have. Right now, he's 98% sure I have MS. But that 2% is absolutely killing me.

              I hope you're doing better than me.
              Oh boy!! Well ... it's a journey I guess.
              I just got approved for Medicaid. I'm not even sure how I got it since I did not apply for it??!! I wont complain though. So, instead of going to the University hospital that's 4 hours away with a 'charity' fund that has been helping me, I'm going to try a closer doctor. The 8 hour round trip is really hard on me [and whoever has to take me there], so maybe we'll be able to get more things accomplished with a closer doctor? I hope then to get to the bottom of this once and for all. Thank you for mentioning the different MRI machines. I never thought of that. So, I should make sure they use "1.5"? That's all Greek to me!

              It's the "2%" that's getting to me too. My doctors (GP, Neurologist and MS Specialist) all say it's MS but the MRI scans are not "MS specific" I guess. So they are waiting for more definite scars. I have scars, but they could be because of any number of things ... like a rough life when I was younger.

              Well ... the journey continues.

              Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
              Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
              EDSS of 5.5, sometimes 6.0

              Comment


                #22
                Originally posted by jjs View Post
                Oh boy!! Well ... it's a journey I guess.
                I just got approved for Medicaid. I'm not even sure how I got it since I did not apply for it??!! I wont complain though. So, instead of going to the University hospital that's 4 hours away with a 'charity' fund that has been helping me, I'm going to try a closer doctor. The 8 hour round trip is really hard on me [and whoever has to take me there], so maybe we'll be able to get more things accomplished with a closer doctor? I hope then to get to the bottom of this once and for all. Thank you for mentioning the different MRI machines. I never thought of that. So, I should make sure they use "1.5"? That's all Greek to me!

                It's the "2%" that's getting to me too. My doctors (GP, Neurologist and MS Specialist) all say it's MS but the MRI scans are not "MS specific" I guess. So they are waiting for more definite scars. I have scars, but they could be because of any number of things ... like a rough life when I was younger.

                Well ... the journey continues.
                Hi JJS,

                Actually, the machine you want an MRI on is a Telsa 3 or a 3.0 MRI machine. Now I'm not an expert, but from what I gather and have been told, the telsa 3 produces much more clearer images than the 1.5. My doctor likened it between the difference of a polaroid and a zoom lense as far as clarity is concerned. Granted, it's not much clearer, but after looking at all MRI's (there are too many!) I can see the difference in clarity between the 1.5 machine and the 3.0 machine.

                I'm glad you were approved for medicaid since I know it will help a great deal. When you're looking for a neurologist, make sure you get one that is MS Specific, and not just a run-of-the-mill neurologist who happens to have a few MS patients. Also, look up their ratings online as well. Trust me when I say that if he/she got a bad rating by a lot of patients, more than likely he/she isn't worthy of wasting your time on. I learned that the hard way.

                I have an appointment this Friday with my neurologist to go over every one of my many MRI's and a complete overhaul of my charts for the past almost two years now. I hope to find an answer then, even if it's ugly.

                Good luck to you. Please keep me updated.

                Comment


                  #23
                  As promised, I am back again with an official diagnosis.

                  I was diagnosed with MS, most likely SPMS or perhaps an atypical form of PPMS.

                  In either case, my only option is to try Tysarbi and I'm not too keen on that. However, I will research it and then decide.

                  I sure hope your results are better, JJS.

                  Comment


                    #24
                    Originally posted by ShellsBells View Post
                    As promised, I am back again with an official diagnosis.

                    I was diagnosed with MS, most likely SPMS or perhaps an atypical form of PPMS.

                    In either case, my only option is to try Tysarbi and I'm not too keen on that. However, I will research it and then decide.

                    I sure hope your results are better, JJS.
                    Thank you for the advice and the update. I'm sorry to hear of the diagnosis but ... this coming from my ignorance ... do you feel like at least there's closure now? No more wondering?

                    I have an appointment on June 30 with a neurologist in a city an hour away. Unfortunately they do not have MS specific neuros in any city "near" me. The closest would be 3 hours away (KC).

                    What I don't like is that these drs don't know me (us) prior to this mess. And then I'm too passive about sharing my struggles. So I'm going to make an updated list/letter of everything I can think of so I don't forget

                    I'll update later. Thanks again!!!

                    Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                    Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                    EDSS of 5.5, sometimes 6.0

                    Comment


                      #25
                      RRMS or PPMS

                      Originally posted by jjs View Post
                      Did you guys always know you had PPMS instead of RRMS?
                      Thank you.
                      Hi JJS,
                      The neurologist who diagnosed me with MS in 2005 started out with a diagnosis of RRMS, even though we both suspected PPMS. He said that we couldn't rule out relapses that occurred before my diagnosis since we all have a strong tendency toward denial. I changed neurologists to one at an MS Center recommended by the NMSS and in 2007, after no evidence of relapses, that neuroligist changed my diagnosis to PPMS.
                      Best regards,
                      Jim-T
                      Jim DX RRMS Dec-2005, PPMS Jul-2007

                      Comment


                        #26
                        Originally posted by Jim-T View Post
                        Hi JJS,
                        The neurologist who diagnosed me with MS in 2005 started out with a diagnosis of RRMS, even though we both suspected PPMS. He said that we couldn't rule out relapses that occurred before my diagnosis since we all have a strong tendency toward denial. I changed neurologists to one at an MS Center recommended by the NMSS and in 2007, after no evidence of relapses, that neuroligist changed my diagnosis to PPMS.
                        Best regards,
                        Jim-T
                        Thank you Jim-T. It's been a lonely, frustrating road. I still do not have spots showing up on my MRIs, so there's really nothing I can do I guess but ride it out. I have made every possible change I can think of (and was already living a 'healthy lifestyle' for several years prior to my issues) and I still get worse as the years go by. It can be quite discouraging if I let it.

                        I've had thoughts of actually MOVING to Rochester MN for a while just so I can attend the Mayo Clinic to get to the bottom of this. I just don't know what else to do. I have a new Neurologist who applauded all of the changes I've made and encouraged me to keep heading down this path. He believes I should start seeing some positive results sooner or later. We'll see!! I'm glad he at least is supportive and encouraging. He recommends the Wahls Protocol, plenty of sleep, rest, exercise (as you are able), and no stress We have been chipping away at my life ever since this all began to happen and we're just not sure what else we can chip off!!!! So, we just keep walking.

                        Thanks again!

                        Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                        Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                        EDSS of 5.5, sometimes 6.0

                        Comment


                          #27
                          Try a 0.3 OPEN MRI that
                          I chose for COMFORT on last year's round of brain t and c spine.
                          Wasted money, time, and my Dr. Literally said I was CURED. (Dx of rrms was in 2013). He didn't bother to question WHY I had normal scans all of a sudden, I left devastated... not becauseI wanna be the COOL KID at the table with this awesome disease (sarcasm oozing), but because I had recently at the time seen a huge DECLINE in my body, and was feeling worse than ever). He sent me away cured of a disease that has NO cure, with zero desire to explain how I was cured, or if not this for the last 5 years then WHAT? He is the DXing Dr. Lol

                          It took me 10 minutes on Google to figure out the 0.3 was the problem... and he's a Neuro. Pfft.
                          I'm now under care with an actual MS specialist that he referred me to, and she knew without me saying a word as she viewed the POINTLESS MRI scans... that they were USELESS.
                          I just had my 3 scans redone... and get results Tuesday. At least she's already told me she won't remove my DX unless or until there's a replacement.

                          Why the MRI facility didn't warn me.. I don't know. They took my money, and laughed at me... I found the CURE for MS... go to a 0.3 OPEN mri... sigh.

                          I'm now
                          [QUOTE=ShellsBells;1492933]Hi JJS,


                          My update: I had a spinal. Came back clean (can't remember if I told you that or not). And then one day I was looking through the records and cd's that I have of my MRI"s and I noticed my last one was done on the incorrect MRI machine. My doctor ordered a brain MRI on a telsa 3 and not the normal 1.5 MRI machine. After a bunch of hogwash, they sent me back for another MRI which shows a clearer picture of the lesions I have. The weird part is that I've had three on my brain and all three mention that my lesions are in different spots in my brain. This one, I had a few more, kind of predictable since it IS a better machine.
                          DX'ed Rrms Oct 2013
                          Although I'm a blue placard carrier...i refuse to admit defeat today!

                          Comment


                            #28
                            Originally posted by jenmomof4 View Post
                            Try a 0.3 OPEN MRI that
                            I chose for COMFORT on last year's round of brain t and c spine.
                            Wasted money, time, and my Dr. Literally said I was CURED. ...

                            It took me 10 minutes on Google to figure out the 0.3 was the problem... and he's a Neuro. Pfft.
                            I'm now under care with an actual MS specialist that he referred me to, and she knew without me saying a word as she viewed the POINTLESS MRI scans... that they were USELESS.
                            I just had my 3 scans redone... and get results Tuesday. At least she's already told me she won't remove my DX unless or until there's a replacement.
                            How did the new scans turn out?

                            Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                            Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                            EDSS of 5.5, sometimes 6.0

                            Comment

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