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    Hi there, I’m newly registered but have been exploring a lot of threads lately. My symptoms started March 13, 2018. I have one lesion on my brain, 9 o-bands, and my consistent symptoms I’m still experiencing are headaches, numbness on the right side of my head and face, ringing/buzzing in my right ear, dizziness, fatigue.
    Secondary symptoms include nausea, insomnia, cog fog, depression, and mode swings. I say secondary because my Nero does not believe they are related to the lesion. He also does not believe the headache is related, but I disagree with him.

    I am 3 1/2 months into my first flare with no new symptoms so I have not been dx yet. My Nero says if I have a second attack then I will be dx and put into a treatment plan. Until then I am in limbo. I realize it could be months or even years if I have another attack, but I just hate being in this weird place where I want answers, but don’t like the idea of being dx’ed with a life long disease. Anybody out there experiencing this state? I’d love to here from you.

    #2
    Hi trimybest, I didn't think you need to have 2 episodes or flares to be DX anymore, I thought you could have an MRI and lumber puncture to confirm DX,
    as for headaches I get them really often for months straight but now my neurologist gives me botox injections every 3 months in my head and neck and down jaw line and this has helped immensely, the headaches continue for a couple of weeks after botox then they disappear for the next 2 months, I often get nausea from the headaches and the other symptoms seem to be part of the MS journey.

    With depression you need to deal with this and get some help, MS isn't the end of the world I have had it for more then 25 years and with the treatment out now and early intervention can be managed if not treated good luck Craig

    Comment


      #3
      Thank you

      Originally posted by dastardly View Post
      Hi trimybest, I didn't think you need to have 2 episodes or flares to be DX anymore, I thought you could have an MRI and lumber puncture to confirm DX,
      as for headaches I get them really often for months straight but now my neurologist gives me botox injections every 3 months in my head and neck and down jaw line and this has helped immensely, the headaches continue for a couple of weeks after botox then they disappear for the next 2 months, I often get nausea from the headaches and the other symptoms seem to be part of the MS journey.

      With depression you need to deal with this and get some help, MS isn't the end of the world I have had it for more then 25 years and with the treatment out now and early intervention can be managed if not treated good luck Craig
      thanks Craig, yeah the newly revised McDonald criteria calls for two separate attacks in time and space in cases where you only have one lesion and confirmed o bands, like me. If you have two or more, that’s a dx. So it’s a waiting game. I am on meds for the depression and insomnia, I had steroid infusion which gave me temporary relief, but I’m going to ask about the Botox. You are not the first I have heard have had relief with it.

      Comment


        #4
        Originally posted by Trimybest View Post
        Hi there, I’m newly registered but have been exploring a lot of threads lately. My symptoms started March 13, 2018. I have one lesion on my brain, 9 o-bands, and my consistent symptoms I’m still experiencing are headaches, numbness on the right side of my head and face, ringing/buzzing in my right ear, dizziness, fatigue.
        Secondary symptoms include nausea, insomnia, cog fog, depression, and mode swings. I say secondary because my Nero does not believe they are related to the lesion. He also does not believe the headache is related, but I disagree with him.

        I am 3 1/2 months into my first flare with no new symptoms so I have not been dx yet. My Nero says if I have a second attack then I will be dx and put into a treatment plan. Until then I am in limbo. I realize it could be months or even years if I have another attack, but I just hate being in this weird place where I want answers, but don’t like the idea of being dx’ed with a life long disease. Anybody out there experiencing this state? I’d love to here from you.
        Hi Trimybest

        I like your clever username.

        Just want to welcome you to MSWorld.

        Hopefully you continue to share with us how you are doing, and what you find out.

        You have found a good place to vent, if you need to or want to.

        Wishing you the best!

        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


          #5
          Tri is for triathlon

          Originally posted by KoKo View Post
          Hi Trimybest

          I like your clever username.

          Just want to welcome you to MSWorld.

          Hopefully you continue to share with us how you are doing, and what you find out.

          You have found a good place to vent, if you need to or want to.

          Wishing you the best!

          Take Care
          hi coco, I am a triathlete on a involuntarily break right now. Because of my symptoms I have not been able to get out and do what I love. I have faith though that I can bounce back! I see you have had this for 10 years. Will you share your story with me?

          Comment


            #6
            Originally posted by Trimybest View Post
            hi coco, I am a triathlete on a involuntarily break right now. Because of my symptoms I have not been able to get out and do what I love. I have faith though that I can bounce back! I see you have had this for 10 years. Will you share your story with me?
            Trimybest

            Ahh - the Tri in your user name is for triathlon, even more clever!

            I once was asked to be the bike person in a relay triathlon (I think it was for charity), but didn't think I could handle it at the time, so I declined. It was in the hot summer.

            I was dx with PPMS (Primary Progressive MS) 20 years ago. My early symptoms involved gait disturbances (leg weakness and dragging leg, limp), arm weakness and hand dexterity problems, bladder issues, heat sensitivity (physical weakness when too warm), eye muscle coordination problems, and Lhermitte's sign.

            There has been a gradual, consistent progression over the years, with some plateau periods where things seem stable for awhile.

            I didn't have to wait very long for a dx because of brain and spinal cord lesions, O-Bands, and the history of progression. It must be frustrating to have to wait and wonder what is wrong while having symptoms to deal with.

            It's good that you have faith that you can bounce back. Try to remain hopeful.

            Your symptoms may resolve over time. If you are dx'd with RRMS, there are disease modifying drugs that may prevent and slow down the relapses.

            For now, take good care of yourself the best you can, physically, mentally, and emotionally.

            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


              #7
              Originally posted by Trimybest View Post
              thanks Craig, yeah the newly revised McDonald criteria calls for two separate attacks in time and space in cases where you only have one lesion and confirmed o bands, like me. If you have two or more, that’s a dx. So it’s a waiting game. I am on meds for the depression and insomnia, I had steroid infusion which gave me temporary relief, but I’m going to ask about the Botox. You are not the first I have heard have had relief with it.
              I think they have to wait for two separate flairs (or lesions) to officially DX, but from what I am reading, they now start treating at the CIS stage, which it sounds like what the OP is in.

              I know all the meds are very hard core, but the OP should consider about asking about starting one now. When I had my first symptoms back in 2012 (documented as CIS), they didn't start treating, and I wish they did. The OP would be better off to try *not* to have that second relapse because they build on each other...but obviously, it's a personal decision.

              Comment


                #8
                CIS

                Originally posted by angel22_99 View Post
                I think they have to wait for two separate flairs (or lesions) to officially DX, but from what I am reading, they now start treating at the CIS stage, which it sounds like what the OP is in.

                I know all the meds are very hard core, but the OP should consider about asking about starting one now. When I had my first symptoms back in 2012 (documented as CIS), they didn't start treating, and I wish they did. The OP would be better off to try *not* to have that second relapse because they build on each other...but obviously, it's a personal decision.
                i don’t even think he has labeled this as a CIS. He hasn’t stated that and nothing documented. He tells me a lot of my symptoms are not “classic” of ms. My Nero exam was normal. That might have something to do with it.

                Comment


                  #9
                  Originally posted by Trimybest View Post
                  hi coco, I am a triathlete on a involuntarily break right now. Because of my symptoms I have not been able to get out and do what I love. I have faith though that I can bounce back! I see you have had this for 10 years. Will you share your story with me?
                  Not to butt in but it is totally possible to bounce back.

                  I have been living with MS for 17 years now and I am up every morning before 5, usually the first one into work, exercise during lunch sometimes, walk at a brisk pace with my wife almost daily, do calisthenics on the gymnast rings and train Jiu Jitsu. Life doesn't end at diagnosis.

                  You may not ever be 100% but I have learned that there is a very small percentage of people that can keep up with a determined individual even if that individual is playing with a disadvantage. The pins and needles are there, the fatigue comes and goes, train smart, rest when you need to and feed your body good fuel. As a triathlete, you probably do these things anyway, it just matters even more now.
                  The future depends on what you do today.- Gandhi

                  Comment


                    #10
                    Originally posted by Boudreaux View Post
                    Not to butt in but it is totally possible to bounce back.

                    I have been living with MS for 17 years now and I am up every morning before 5, usually the first one into work, exercise during lunch sometimes, walk at a brisk pace with my wife almost daily, do calisthenics on the gymnast rings and train Jiu Jitsu. Life doesn't end at diagnosis.

                    You may not ever be 100% but I have learned that there is a very small percentage of people that can keep up with a determined individual even if that individual is playing with a disadvantage. The pins and needles are there, the fatigue comes and goes, train smart, rest when you need to and feed your body good fuel. As a triathlete, you probably do these things anyway, it just matters even more now.

                    Thats awesome man! I am very anxious to get active again. When I can get these headaches under control I’m sure I will be back out there. I’m starting a med that is supposed to help percent the headaches, but it takes about a month to see if it’s effective. Fingers, toes, and eye balls crossed.

                    Comment


                      #11
                      Newbie

                      Originally posted by Trimybest View Post
                      Hi there, I’m newly registered but have been exploring a lot of threads lately. My symptoms started March 13, 2018. I have one lesion on my brain, 9 o-bands, and my consistent symptoms I’m still experiencing are headaches, numbness on the right side of my head and face, ringing/buzzing in my right ear, dizziness, fatigue.
                      Secondary symptoms include nausea, insomnia, cog fog, depression, and mode swings. I say secondary because my Nero does not believe they are related to the lesion. He also does not believe the headache is related, but I disagree with him.

                      I am 3 1/2 months into my first flare with no new symptoms so I have not been dx yet. My Nero says if I have a second attack then I will be dx and put into a treatment plan. Until then I am in limbo. I realize it could be months or even years if I have another attack, but I just hate being in this weird place where I want answers, but don’t like the idea of being dx’ed with a life long disease. Anybody out there experiencing this state? I’d love to here from you.
                      I really don't like the idea of waiting in order to be diagnosed. Have you considered seeing another neurologist for a second opinion? I had to do that and got rid of my pcp and old neurologist. You need to have a diagnosis in order to get started on a drug therapy program. Carol

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