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    Not sure I want to be in limbo anymore

    These are still my thoughts (what I said originally in the last thread I started in sept 2015) but I wanted to give an update I guess. I struggle with going back to the dr. In a way I'd really like to have an official diagnosis and talk to them about PPMS. But, why?
    Every day is somewhat functional, but not without struggles. Some times things are a lot worse. There's a fine line between hanging on and doing too much, and unfortunately I don't know the boundaries until I cross them or play it safe and stop early. I know I'll never be the same, but sometimes I forget that. Sometimes I'm too hard on myself and don't realize my expectations are not
    realistic.
    Any way - for those that have a rough time day in and day out but are still usually able to walk and are usually somewhat functional, can you share your diagnosis and a little about your MS? I still wonder if I might have PPMS but ... I don't know. Maybe I'm just understanding RRMS wrong? There is no "remitting" here but there are times when I am more functional.

    Thanks for listening. I'd like to include a link to the last thread I posted but I'm on my phone and not sure how to do that. It's titled something like my thoughts so far - I'm sure you can find it by clicking on my name?

    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

    #2
    Originally posted by jjs View Post
    I'd like to include a link to the last thread I posted but I'm on my phone and not sure how to do that. It's titled something like my thoughts so far - I'm sure you can find it by clicking on my name?
    Here's the thread you were referring to, and yes, that's how you find other posts ~

    http://www.msworld.org/forum/showthr...ies-and-input)
    Kimba

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

    Comment


      #3
      My 2 cents

      By no means educated about all this, but you sound a lot like me. May I ask if your MRIs had any enhanced lesions? You may be PRMS. Or as the National MS Society terms primary progressive active.

      Comment


        #4
        Originally posted by ladycaralaw View Post
        By no means educated about all this, but you sound a lot like me. May I ask if your MRIs had any enhanced lesions? You may be PRMS. Or as the National MS Society terms primary progressive active.
        What's your MS like?
        They found two spots on my MRI - but said they were not MS-specific. The last MRIs were taken two or so years ago. I've been in touch with the neurologists again and they want me to get an EMG.
        I'm not trying to sound like I'm complaining ....... it's just that the struggle is very real and I'm trying to face it head on instead of act like it's not there. If I did not have such awesome help every day I would not be doing as "good" as I am.
        I'm 40 and have to use the electric scooter cart thing at Sam's. But ... it's either that or be totally disfunctional later. I just usually stay home or keep my trips out as short as possible.
        Again ... not complaining ... just facing reality. Thanks for listening.

        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


          #5
          My situation is very similar to yours and is the most frustrating experience of my life. I just want an answer as to why my legs don't function like they did before, and why I continue to have symptom after symptom of MS yet nobody officially calls it that.

          I also have two lesions which are "indicative for MS" and a wide array of smaller ones throughout. They never said what those smaller ones are except to basically tell me not to worry about them. The big ones aren't in the right spots to call it MS. So what the heck is it?

          For the past 14-15 months, my legs have been awful and now my arms are awful too. Every day I get progressively worse. It is rare to have a good day, but when I do I try to do whatever I can to make up for the days which I could hardly function. The very next day, I'm back to square one.

          I'm tired, I'm beyond frustrated and I am truly just ready to chuck it all and say let whatever comes, come and stop worrying about what is wrong. I did tell my family that should I never get a diagnosis that my upon my death my brain is to be sent to a medical facility and analyzed. Once they find out what is making me weak every day, then they can shove that report up all the doctors rears.

          Bad day, sorry.



          Originally posted by jjs View Post
          What's your MS like?
          They found two spots on my MRI - but said they were not MS-specific. The last MRIs were taken two or so years ago. I've been in touch with the neurologists again and they want me to get an EMG.
          I'm not trying to sound like I'm complaining ....... it's just that the struggle is very real and I'm trying to face it head on instead of act like it's not there. If I did not have such awesome help every day I would not be doing as "good" as I am.
          I'm 40 and have to use the electric scooter cart thing at Sam's. But ... it's either that or be totally disfunctional later. I just usually stay home or keep my trips out as short as possible.
          Again ... not complaining ... just facing reality. Thanks for listening.

          Comment


            #6
            Originally posted by ShellsBells View Post
            My situation is very similar to yours and is the most frustrating experience of my life. I just want an answer as to why my legs don't function like they did before, and why I continue to have symptom after symptom of MS yet nobody officially calls it that.

            I also have two lesions which are "indicative for MS" and a wide array of smaller ones throughout. They never said what those smaller ones are except to basically tell me not to worry about them. The big ones aren't in the right spots to call it MS. So what the heck is it?

            For the past 14-15 months, my legs have been awful and now my arms are awful too. Every day I get progressively worse. It is rare to have a good day, but when I do I try to do whatever I can to make up for the days which I could hardly function. The very next day, I'm back to square one.

            I'm tired, I'm beyond frustrated and I am truly just ready to chuck it all and say let whatever comes, come and stop worrying about what is wrong. I did tell my family that should I never get a diagnosis that my upon my death my brain is to be sent to a medical facility and analyzed. Once they find out what is making me weak every day, then they can shove that report up all the doctors rears.

            Bad day, sorry.
            I understand
            It's been about 5 or maybe 6 years for me. This whole time I've been very passive and not too much interested in seeing the doctors ... but it seems like it's time to be more pro-active. My passiveness has been because I do not want to take meds so what's the point in seeing drs? But I even if I never take meds, I think it would help me mentally to have some sort of "closure" on the deal.
            Also, as my movement becomes more and more impaired and other issues get worse as time goes by, I might start looking in to medication options.
            I don't know. All I know is, 6 years ago I was super active ... my favorite activity was hiking ... and now I cannot even take a flat dirt trail unless I have a cane and take it slow (and not go too far!!! We used to spend ALL DAY hiking difficult trails!!!! Pack a lunch, etc. This is what I've always done even as a child ... and now it's nonexistent).
            But, I'm finding other ways to enjoy nature as best as I can. We were not made to sit inside a stuffy house all day! And I believe sitting around like that makes it worse. So if I'm ever wheel chair bound I'll get an electric one so I can still get 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


              #7
              I can honestly say that my overall health has been declining for years. However, like you, I was too busy to worry about it and too defiant to care. I had things to do, a lot of things, and I truly didn't want to hear anything except "it's done". Plus, I do not like doctors, not at all.

              I used to work two jobs, (both part time) and then I worked one full time. I have very active kids and I used to volunteer about 40 hours or more a week on top of all of that. I used to do so much, I used to be somebody. My time mattered.

              Over the years I couldn't handle as much. I would get tired more often, I would trip a lot, I would struggle to find the correct word to use in the middle of a sentence and I would forget people's names. I am highly adaptable so I did what I do best, I adapted. I made do with whatever capabilities I had and I ignored the buzzing I had in my brain that something was just not right.

              Now, I don't work anymore. I have stopped all volunteering and my highlight of the day is when I can safely walk up a flight of steps which always wears me out. It's my new normal, or whatever that is.

              Like you, I am so not into the medications available and my gut feeling is that none of them will help me anyway. I'm not sure why I have this feeling, but I just do. It's hard to explain.

              I think I just want an answer as to why, to have someone explain what exactly happened to my body so I can make sense of why I am where I am today.







              Originally posted by jjs View Post
              I understand
              It's been about 5 or maybe 6 years for me. This whole time I've been very passive and not too much interested in seeing the doctors ... but it seems like it's time to be more pro-active. My passiveness has been because I do not want to take meds so what's the point in seeing drs? But I even if I never take meds, I think it would help me mentally to have some sort of "closure" on the deal.
              Also, as my movement becomes more and more impaired and other issues get worse as time goes by, I might start looking in to medication options.
              I don't know. All I know is, 6 years ago I was super active ... my favorite activity was hiking ... and now I cannot even take a flat dirt trail unless I have a cane and take it slow (and not go too far!!! We used to spend ALL DAY hiking difficult trails!!!! Pack a lunch, etc. This is what I've always done even as a child ... and now it's nonexistent).
              But, I'm finding other ways to enjoy nature as best as I can. We were not made to sit inside a stuffy house all day! And I believe sitting around like that makes it worse. So if I'm ever wheel chair bound I'll get an electric one so I can still get out.

              Comment


                #8
                Originally posted by ShellsBells View Post
                I can honestly say that my overall health has been declining for years. However, like you, I was too busy to worry about it and too defiant to care. I had things to do, a lot of things, and I truly didn't want to hear anything except "it's done". Plus, I do not like doctors, not at all.

                I used to work two jobs, (both part time) and then I worked one full time. I have very active kids and I used to volunteer about 40 hours or more a week on top of all of that. I used to do so much, I used to be somebody. My time mattered.

                Over the years I couldn't handle as much. I would get tired more often, I would trip a lot, I would struggle to find the correct word to use in the middle of a sentence and I would forget people's names. I am highly adaptable so I did what I do best, I adapted. I made do with whatever capabilities I had and I ignored the buzzing I had in my brain that something was just not right.

                Now, I don't work anymore. I have stopped all volunteering and my highlight of the day is when I can safely walk up a flight of steps which always wears me out. It's my new normal, or whatever that is.

                Like you, I am so not into the medications available and my gut feeling is that none of them will help me anyway. I'm not sure why I have this feeling, but I just do. It's hard to explain.

                I think I just want an answer as to why, to have someone explain what exactly happened to my body so I can make sense of why I am where I am today.
                Adaptable is good!! I believe it helps reduce some stress.
                I have that same "gut feeling" about medication.
                We are very similar - that's encouraging ... kind of!
                My highlight of each day is knowing I've honestly done all I could do I think this helps my attitude a lot. I mean, sometimes I'm tempted to literally sit all day long because I don't feel good - but I know I could at the very least do xyz - and tgen I ferl bad about myself. I don't want to give way to laziness! If all I can do is sweep the floor and then rest, I'll feel good about myself knowing I gave it my all.

                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


                  #9
                  Just now getting back to you

                  My symptoms started last May. I thought I was getting shingles on my left abdomin. Real itchy and 'zingers' going through the area. From there, my skin started getting numbon left side; not totally numbbut 'muted'. End of May, went on vacation. Walking was hard, my feet were on fire.

                  The feet being on fire subsided after about a month. I still couldn't (and can't) feel my toes much. The fatigue has been an ongoing issue, dteadily getting worse. About this last month I'd say, my walking, coordination, balance has all gotten worse rather quickly. Muscle fatigue, especially stairs, seems way worse. Now I get thevpins and needles in my left foot that I can really feel, happens several times a day.

                  I noticed our MRIs are really different. Mine of brain was 30-40 lesions with one brightly enhanced. One old lesion on thorasic spine. Neuro says I've had it for years. It just chose now to rear its ugly head. Like you, mine was rapid onset with rapid progrssion these last months. Oh, did I mention I was falling for unknown reasons?


                  Comment


                    #10
                    Funny you should mention shingles. I've had them at least twice, but the third I'm not sure about. I had the same pain, perhaps a bit deeper, and just different feeling all around. It seemed to be more muscular pain which may or may not have been the infamous MS hug. Who knows.

                    Anyhow, sorry you are here and even sorrier to hear you have MS. I'm sure you're glad though that you have a name for what making your body as it is.

                    Did they happen to diagnose you with a specific type of MS or did they just say "MS"?



                    Originally posted by ladycaralaw View Post
                    My symptoms started last May. I thought I was getting shingles on my left abdomin. Real itchy and 'zingers' going through the area. From there, my skin started getting numbon left side; not totally numbbut 'muted'. End of May, went on vacation. Walking was hard, my feet were on fire.

                    The feet being on fire subsided after about a month. I still couldn't (and can't) feel my toes much. The fatigue has been an ongoing issue, dteadily getting worse. About this last month I'd say, my walking, coordination, balance has all gotten worse rather quickly. Muscle fatigue, especially stairs, seems way worse. Now I get thevpins and needles in my left foot that I can really feel, happens several times a day.

                    I noticed our MRIs are really different. Mine of brain was 30-40 lesions with one brightly enhanced. One old lesion on thorasic spine. Neuro says I've had it for years. It just chose now to rear its ugly head. Like you, mine was rapid onset with rapid progrssion these last months. Oh, did I mention I was falling for unknown reasons?


                    Comment


                      #11
                      thank you

                      Thank you all for sharing. I should have responded sooner but I haven't been doing the best.
                      ShellsBells - I hope I remember speaking with you because I'm interested to know if your drs ever decide anything
                      I posted an update in the PPMS board - on the thread titled something like PPMS or time.

                      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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