Announcement

Collapse
No announcement yet.

Processing bad news

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Processing bad news

    Hi 😊

    So for the most part I've managed to act like I don't have MS the past almost 8 years and it seems as though that isn't going to work anymore lol

    Year half ago I had mri dr told me on my way to being in a wheelchair. I went on tysabri, had terrible side effects didn't go for more.

    Took supplements gym etc my horse. Past month not feeling great loss feeling in feet vertigo nauseousness memory going a limp
    Started. Went to See one of the top ms drs here in New York. She gave me super thorough exam, looked at last reports. Ordered ton of Mris even longer ones. So I said so what do you think?

    She said I'll know more once you get Mris yet your central nervous system can only handle so many hits. Unfortunately your gonna pay the price bigtime for this MS. I said what does that mean wheelchair, memory going, speech. She just looked at me. I said great.

    So kind of surreal I floated into the parking lot into my truck lol been processing for days.

    So clearly I'll do whatever she suggests. First thing I thought was I still have two places I want to travel to before this hits lol

    I gotta make some changes at home, I work two jobs, do everything. My daughter and her child live with me she is way young. Has to go to college etc I work hard to keep the horse. He's at a barn where I do all the physical work. Separated for 7 long years, we had been talking prior to this. So I'm thinking time to go bk to my marriage 😊

    Anyway just needed to vent that out. I'm making my friends nervous and family. I can't tell them stuff because it makes them nervous than I gotta help them with their feelings 🙄😬
    Jen Dx'd 5/11
    "Live each day as if it were your last"

    #2
    Hi Jen,

    I'm sorry you are going through some tough stuff. I'm trying to understand why your "top dr." inferred that you are going to pay the price big time and end up in a wheelchair? Especially since s/he hasn't even seen your MRI report. I'm not sure I'd be happy to have a neuro imply doom and gloom! Or is this based on previous reports? Have you been to other neuros?

    Have you been taking any DMT for these past 8 years?

    It's good that you're thinking about your future and perhaps making some changes. Let us know what the Dr has to say and her suggestions for your future.

    Take care.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      She looked at my last MRI. The report and the pictures. My last neuro said the same thing, so I ran.



      I'm sorry you are going through some tough stuff. I'm trying to understand why your "top dr." inferred that you are going to pay the price big time and end up in a wheelchair? Especially since s/he hasn't even seen your MRI report. I'm not sure I'd be happy to have a neuro imply doom and gloom! Or is this based on previous reports? Have you been to other neuros?

      Have you been taking any DMT for these past 8 years?

      It's good that you're thinking about your future and perhaps making some changes. Let us know what the Dr has to say and her suggestions for your future.

      Take care.[/QUOTE]
      Jen Dx'd 5/11
      "Live each day as if it were your last"

      Comment


        #4
        She's known to be blunt. I'm ok with blunt.

        She's running all spinal Mris. They said same thing year half ago. I was like that's just craziness and dramatic. I'll be fine.

        No been on almost all the meds yet had bad reactions, throat closing etc


        I'm sorry you are going through some tough stuff. I'm trying to understand why your "top dr." inferred that you are going to pay the price big time and end up in a wheelchair? Especially since s/he hasn't even seen your MRI report. I'm not sure I'd be happy to have a neuro imply doom and gloom! Or is this based on previous reports? Have you been to other neuros?

        Have you been taking any DMT for these past 8 years?

        It's good that you're thinking about your future and perhaps making some changes. Let us know what the Dr has to say and her suggestions for your future.

        Take care.[/QUOTE]
        Jen Dx'd 5/11
        "Live each day as if it were your last"

        Comment


          #5
          Sorry to hear. I have never heard of a Dr.telling someone they are on way to wheelchair. Is it possible a scare tactic to get you on a DMD? Did they explain your MRI?

          I get not telling family and friends. I used a therapist once to get my fears out in a safe place without upsetting those close to me. But this is a great place to do it as well.

          Did you have your new MRIs? When is your follow-up?

          Good luck with changes.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Have you thought of going on Ocrevus ?
            Linda

            Comment


              #7
              I'm sorry you are struggling. I also prefer blunt and would rather know what I'm dealing with so I have the opportunity to make adjustments as opposed to someone ignoring or candy coating the situation. Unfortunately MS can be brutal and sometimes it is glossed over here under the guise of remaining positive. I attempt to make proactive changes when I see the writing on the wall.

              Please keep us posted and maybe consider having mods move this to the main section for more responses?
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #8
                I agree, that's why last year when my regular neuro said it to me after the Mris I said bye. Lol

                That's why this new woman who does have a great reputation repeated him I said hmmm

                Legs are weak, I'm secondary now so I don't have relapses much Im just in it. I think she saw mri saw my exam and made the assumption.

                I don't panic though it's not my nature. Waiting on insurance to approve the Mris. She wants brain, two diff spinal.

                My main symptoms aren't too bad. Numb feet, leg pain, burning all over, facial numbness, not all time, fatigue, balance issues vertigo naseousness. Memory issues are bad, word delay. I'm totally able to work both jobs I just get super tired.

                I'm ok now had few days to process it. I still don't want to go on meds. Their all just kind of horrible, imo ones I know about. Maybe she'll anti up something better.

                Had my daughter go to store tonite to grab food let's just say that'll take time lol I'm trying to delegate. 😊🙄





                Originally posted by pennstater View Post
                Sorry to hear. I have never heard of a Dr.telling someone they are on way to wheelchair. Is it possible a scare tactic to get you on a DMD? Did they explain your MRI?

                I get not telling family and friends. I used a therapist once to get my fears out in a safe place without upsetting those close to me. But this is a great place to do it as well.

                Did you have your new MRIs? When is your follow-up?

                Good luck with changes.
                Jen Dx'd 5/11
                "Live each day as if it were your last"

                Comment


                  #9
                  Originally posted by sunshine008 View Post
                  Hi 😊

                  So for the most part I've managed to act like I don't have MS the past almost 8 years and it seems as though that isn't going to work anymore lol

                  Year half ago I had mri dr told me on my way to being in a wheelchair. I went on tysabri, had terrible side effects didn't go for more.

                  Took supplements gym etc my horse. Past month not feeling great loss feeling in feet vertigo nauseousness memory going a limp
                  Started. Went to See one of the top ms drs here in New York. She gave me super thorough exam, looked at last reports. Ordered ton of Mris even longer ones. So I said so what do you think?

                  She said I'll know more once you get Mris yet your central nervous system can only handle so many hits. Unfortunately your gonna pay the price bigtime for this MS. I said what does that mean wheelchair, memory going, speech. She just looked at me. I said great.

                  So kind of surreal I floated into the parking lot into my truck lol been processing for days.

                  So clearly I'll do whatever she suggests. First thing I thought was I still have two places I want to travel to before this hits lol

                  I gotta make some changes at home, I work two jobs, do everything. My daughter and her child live with me she is way young. Has to go to college etc I work hard to keep the horse. He's at a barn where I do all the physical work. Separated for 7 long years, we had been talking prior to this. So I'm thinking time to go bk to my marriage 😊

                  Anyway just needed to vent that out. I'm making my friends nervous and family. I can't tell them stuff because it makes them nervous than I gotta help them with their feelings 🙄😬
                  Hi I understand completely how you feel right now like numb and I understand not taking any meds for so long but I don't how come your nuro waited so long in between MRIs. I to the point where most days it's just a struggle for me to go and shower and do things. I used to be better at taking care of myself and my house but I don't I think that I probably need to see the Dr.
                  I hope that you start to feel better soon and that you improve some at least.
                  Bobby

                  Comment

                  Working...
                  X