Announcement

Collapse
No announcement yet.

What would you guys do in my situation?

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

    What would you guys do in my situation?

    So here is my situation... I was “diagnosed” st pattys day of 2018. I got kinda trashed and fell and hit my head. Husband takes me to the hospital and they do an MRI. It comes back showing lesions that are consistent with ms.

    So the dr has me come back the next week for a spinal tap and some other blood tests. Everything but the spinal tap came back normal. I’ve had 2 MRIs since and it’s been exactly the same as the first one.

    Is it possible to “have” this but never really “have it. (If that makes sense) basically I have this , but I never develop any issues or complications from this. I’m sick of MRIs and plan to tell my doctor that I don’t want anymore. I’m just really confused about this whole thing.

    From what I’ve read most people have at least some issue that causes them to have testing done. Most days I honestly don’t even think I have it. I remember telling my neurologist that I went to a 2 day rock fest last summer and she seemed so shocked.

    Her words were, “and you were able to handle being in the sun and heat that long.” I didn’t even know that heat was a thing that was supposed to be bad. I guess I mostly what to know what would you guys do in my Situation? I’ve seen three neurologist and they’ve all agreed on this. So I already did the second and third opinion. Anyway thanks for any insight

    #2
    Welcome someone33 to MSWorld.

    Is your neurologist an MS specialist? The McDonald criteria is used to diagnose MS and requires evidence of both dissemination in time and space. So what does that mean?

    For dissemination in space, it basically means that there are lesions in multiple functional areas of the central nervous system. So this could mean lesions in separate areas of the brain, or in spinal areas. Did your neuro MRI the spine as well? If so, what did it show? The cervical spine is a common location for MS.

    For dissemination in time, it could be changes on your MRI or a single MRI with contrast, in which the lesions are seen and after the contrast dye injected, at least one lights up and at least one does not. When one lights up, it represents active inflammation, and when one doesn't, it represents a prior inactive episode of inflammation. That would infer that 2 episodes occurred, which staisfies dissemination in time. Did you have contrast and did it show active and inactice lesions?

    ​​​​​​Usually if someone doesn't meet the criteria and has lesions typical of MS, they diagnose clinically-isolated syndrome (CIS) and monitor someone. If not symptomatic and MRI show no changes after a few years, some neuro will just say come back if you develop symptoms others want to MRI monitor. A friend of mine had this happen, initial CIS after an MRI for concussion after auto accident. Dismissed from care and 7 years later, developed optic neuritis and was diagnosed with MS.

    There is no easy answer for this. I would recommend a second opinion from a MS specialist neuro on your diagnosis. If your diagnosis is confirmed, then discuss next steps.

    I am assuming that even though diagnosed, you are not taking any MS treatments designed to prevent relapses and disability, usually referred to as disease modifying treatments (DMTs)? If that is the case, was that your choice?

    Be aware that you can get lesions without symptoms, often referred to as "silent" lesions. That happened to me. I did have vertigo, no brain lesions. 13 years later, minor numbness in finger and another symptom, and surprise 4 brain lesions and 12 spinal lesions. Only 2 of the spinal lesions correlated to symptoms. So the other 10, never caused symptoms. A few caused subsequent issues years later.

    So if diagnosis confirmed, factor the potential for "silent" lesions development into your decision and risk analysis. These are only found by MRI.

    Hope you get more input. Lots of luck to you.








    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      I’m pretty sure the second neurologist was a specialist. (At least that’s what the Website said when I was researching people). She said everything I’ve seen meet the criteria. She gave me the option to start meds or not. I decided to take one for now because if this is real I’d like to stay symptom free. If it’s not my husband wants me to sue for everything this did to me.


      I can’t think of anything that would be a symptom, but from what I read anything could be considered a symptom if you look hard enough.

      I know I had brain lesions and I think 2 on my c spine. But what I don’t understand is how could I have never had any issue at all from this? I can’t think about actually having to give up my conventions, concerts, and outside events all because heat is bad.

      Comment


        #4
        So it appears you did have a second opinion confirm your diagnosis and you did start treatment.

        You have to consider that the DMT is doing its job - it is preventing a relapse and is also evidenced by no new lesions on your MRI. That is what you want - great news.

        If you go off your DMT, you have to be aware of the risk you take. You could stay asymptomatic and no new lesions, stay asymptomatic and develop lesions, or you could develop symptoms, that could remit or remain permanent. You can always start again, just make sure you know the risk. Unfortunately, there is no crystal ball. You just need to understand the risk and be comfortable with it.

        While I did have a few symptoms, they didn't line up to all the spinal lesions I had when diagnosed. I now have symptoms years later from some of these "silent" lesions. When diagnosed, I had no issues with my right arm/hand, other that a little tingling in my finger. Now, my right hand/arm is numb up to my shoulder without any new lesions. So me, if I could prevent lesions, I would.

        As for heat, not everyone has this problem. I also didn't develop this symptom until about 17 years later. I spent my summers at the beach, going to concerts, running and biking, etc... So there is nothing to stop you from doing these things, so keep enjoying them. Don't limit your life now. You may never even have to. And even if heat becomes an issue, it doesn't mean you can't do these things. I still do some, but just need to plan better.

        Whatever you do, don't stop your treatment and going to the neuro without having this discussion with them. Get their input to make the most informed decision you can.

        Keep us informed. Take care.


        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          I plan to go see the neurologist but there’s no way I’m going inside an mri machine with corona going on. My town is a hot spot, and I’m not comfortable going inside a death tube.

          I told the neurologist I tried as hard as I could to find anything that could be a symptom and it would take a long stretch to have something be considered a issue. I mean I know most people are diagnosed after they have a flare.... but I guess it’s possible mine was found secondary to them making sure I didn’t have any bleeding in my brain from my fall.

          Tbh I’m still not 100% convinced that I have this, but since my copay assistance covers everything and basically meets my out of pocket max for me, I’ll stay on this drug for awhile. Although I don’t really have that many places to inject since I hand a full sleeve on one arm and a half sleeve on the other and a huge tattoo all the way down my left side. So that leaves my stomach, legs, and my right side. My poor legs are so beat up looking all the time now.

          Comment


            #6
            Hi again. Sounds like a good plan. When you see your neuro let him know you have questions about your diagnosis, why you have no symptoms, and why no changes in the MRI. It is always good to have an open dialog.

            I live in the burbs outside a big city. My county was raging with covid-19, especially my area. I postponed my MRI for 3 months, then had it done. I was more nervous just entering the hospital than getting the MRI. So I can understand why you may want to wait.

            Lots of luck.

            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              I had an MRI in July; my MS Specialist believed it was safe. But, everyone needs to decide for themselves what precautions they are going to take. Just trust your gut.

              Meanwhile, choose a healthy lifestyle. Eat healthy foods (consider reading The Wahls Protocol), exercise regularly, get rid of toxins in your household and environment.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                First, I'd say to get a neurologist for a definitive diagnosis. You'll want a neurologist with distinct experience with MS patients (not all have that).

                Is it possible to “have” this but never really “have it. (If that makes sense)
                A valid question. MS can be "dormant" for years. Even after a major attack you might recover all/some and MS might lay dormant. But some neurologists claim that during that time the disease is actually progressing (getting worse) but it's doing so in a way that you aren't aware of it being worse. When you're older you'll notice it.

                It's for that idea -- that it's always getting worse whether we notice it or not -- that neurologists say every person with MS should be on a DMT drug (DMT=Disease Modifying Therapy). DMT drugs are typically immuno-suppressants; they slow down our immune systems from attacking the myelin and causing "lesions". Lesions are literally "brain damage" that may or may not ever heal.
                59M / RRMS / Dx1987 / Ocrevus

                Comment


                  #9
                  Originally posted by Golgotha View Post

                  A valid question. MS can be "dormant" for years. Even after a major attack you might recover all/some and MS might lay dormant. But some neurologists claim that during that time the disease is actually progressing (getting worse) but it's doing so in a way that you aren't aware of it being worse. When you're older you'll notice it.

                  It's for that idea -- that it's always getting worse whether we notice it or not -- that neurologists say every person with MS should be on a DMT drug (DMT=Disease Modifying Therapy). DMT drugs are typically immuno-suppressants; they slow down our immune systems from attacking the myelin and causing "lesions". Lesions are literally "brain damage" that may or may not ever heal.
                  Golgatha - Great point. I think that is what happened to me with my right arm. Years of silent damage pre-diagnosis and gradual worsening post-diagnosis, with no lesion change.

                  Also, just to clarify for any new people, some of the DMTs are immuno-suppresants, others may be immune modulators. The modulators will not make you more succeptible to catching viruses,while the suppresants may raise your risk a little. It is always good to discuss the pros and cons of each with your neuro.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    I’m definitely going to question my neurologist. I have to see another new one. 😡. The one I liked moved to Ohio? Or somewhere that’s not here. The thought of going to a drs office or hospital terrifies me. My husband got a vasectomy last month (since we don’t want kids, and decided to double up with my tube removal)... I almost had a panic attack.

                    I would love to work out again, but I canceled my gym membership bc of COVID and right now our spare bedroom is full of everything we had in our storage shed. (Long story) so my “workout” stuff at home is lost in a huge pile of stuff. I’m not a big eater anyway. My diet is Starbucks for breakfast and lunch and fruit and a sandwich for dinner.

                    and for now I decided against any med that will suppress my immune system. I can’t risk getting sick and especially now with corona, there is no chance of me changing my drug.

                    Comment


                      #11
                      This is something I have thought a lot about. Before we had MRIs maybe a lot of people had plaques but never developed MS. The analogy would be how they see disc herniations on MRIs that we don’t even feel.

                      it I were you I would enjoy life to the fullest as someone who doesn’t have MS. It further symptoms develop consult a neurologist who is knowledgeable about MS and see what they say.

                      Comment


                        #12
                        Originally posted by someone33 View Post
                        l My diet is Starbucks for breakfast and lunch and fruit and a sandwich for dinner...

                        and for now I decided against any med that will suppress my immune system. I can't risk getting sick a
                        Your diet puts you at risk of getting sick. You need a healthy, well balanced diet to get your immune system prepped to fight off viruses.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          I’m definitely going to live life to the fullest (as much as I can since corona took away all my fun), but I do think that there has to be people out there who have lesions and never know about it. I can’t be the only person who had lesions discovered and they had no issues.

                          and my diet is pretty bland because I’ve never been a big eater. When I say Starbucks for breakfast and lunch I mean one coffee for both meals. Not two coffees and food from there. Some days we will cook and I’ll have vegetables and some type of meat. But we are terrible about removing stuff from the freezer to thaw. So it’s usually an quick sandwich

                          Comment


                            #14
                            I was diagnosed when I was 30, had symptoms for a few years but then NONE for about 5 years. I've always taken DMT's since being diagnosed. Its been about 20 years now since my diagnosis and I have pretty bad symptoms. I can't really walk. I am still working but use a mobility scooter. Sometimes MS can be dormant. Sometimes not. Sometimes it comes and goes month to month, day to day.

                            Listen to your neurologists. Take your meds. Get you MRI's (thats how they will be able to tell you med is working) but LIVE YOUR LIFE! Some people live their entire lives with MS and have very few symptoms. This might be you. But for sure find a neurologist you trust and follow their advice. When I was diagnosed, there were only 3 MS medications and now there are over 20! You and your neurologist can work together to find something you are both comfortable with.

                            Also, if you wear a mask and follow the usual protocol, you should be perfectly safe getting an MRI. At least you know there won't be anyone in there breathing Covid on you because there's no room in there!! : D

                            Comment


                              #15
                              I agree with many of you, this could be a time to make a list of adventures you want to go on, every hobby you wanted to get back to ir start, every book you want to read. Exercise by doing activities that you enjoy. When I first got diagnosed I went ice skating and salsa dancing. That was the last time. But I’m so glad I did it!


                              its a shame we have covid. It’s a lot harder to do things with others or travel. But I would live my life as fully as possible- even fuller than you ever dreamed. Maybe you could even fall in love. LIVE!. Just don’t focus on all those pesky doctors appointments and worrying. There will be plenty of time for that later.

                              Comment

                              Working...
                              X