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    Do new symptoms mean Tysabri isn't working?

    I am freaking out here. I've been in Tysabri since Oct 2014 after being diagnosed in June 2014. I've had no true relapses since then but I think I might be having the start of one.

    I have new partial numbness in the soles of both feet. It feels like I had a novocaine shot that's wearing odd. It first hit about a week ago. It's relatively mild but I am still really stressed.

    I have an appointment with a PA in my neurologist office on Monday afternoon but am supposed to go away for a five day vacation on Wednesday.

    Does this likely mean Tysabri isn't working?

    Or God forbid could this be a very early sign of PML?

    I will ask all these questions on Monday but am freaking out. Would love input from anyone with more experience.

    I'm bummed because I thought Tysabri was usually supposed to stop everything in its tracks. I'm 47, diagnosed at 45. RRMS (if there really is any difference between that and the other two). I've been lucky in that I don't have any permanent symptoms yet.

    HELP?

    #2
    Hi,
    I am constantly worrying about what symptoms mean in relation to tysabri and its effectiveness.

    I'm not a doctor, and it sounds like Monday you will get better answers from your Neuro. So, these are just my thoughts.

    I highly doubt that the feeling in your feet is any indicator of PML. (try to relax on that one). I would consider, extreme disorientation, fever, headache at the base of your head/neckline more worrisome.

    I am not sure myself how to interpret symptoms. I'm constantly worrying myself about if it means the tysabri isn't working, if there will be new lesions on my next MRI etc. Being pretty new at it myself I don't have all the answers.

    My understanding would be that since the sensation in your foot has gone on for longer than 24 hours, that it is a new symptom. I'm not 100% sure if you can call that a relapse though.

    In my case, I have been extremely fatigued after having a bad stomach virus/flu with awful diarrhea the first week of February. Now, a month and a half later, I'm finally feeling a bit more 'normal.' I thought that the symptoms of fatigue would count as a relapse, but my neurologist did not think so. She said "you'd know if you were having a relapse."

    So, I like you am really confused. It seems like all of our annoying little "invisible symptoms" for the most part are just part of MS? but not necessarily meaning that we have a relapse? I definitely do try to pay attention t if varying symptoms I have last 24 hours or not though.

    Hopefully more will respond here.
    RRMS Dx: 3/23/15
    (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
    Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

    Comment


      #3
      Hi Chatmagique,

      First, slow down and don't allow thoughts to race around in your mind! It will only cause stress and make matters worse. Fear is never helpful to health.

      Someone once said that courage is fear that has said its prayers. I don't know if you pray or even believe in such an exercise all I'm suggesting is you try it, if you haven't, although I suspect you have Pray. Pray and perhaps peace will enter your heart and mind replacing the fear.

      Before Monday when you see the doctor, you can't do much medically this week-end. For the present, you may try to stop guessing about and fearing what is happening to experience these symptoms because I can almost guarantee you come Monday the crisis is not as bad as you are probably thinking.

      People on Tysabri can have flare-ups. Tysabri doesn't stop everything in its tracks for everyone with MS but it does help many and it is one of the most effective MS meds. It doesn't do everything but it helps.

      PML is a concern on Tysabri. I monitor my wife because she took her first dose early in 2002 and has been on it since then, except for the year or so when it was taken off the market due to PML concerns. But it is so highly effective the FDA approved using it, under a monitoring protocol.

      MRI can catch PML before symptoms appear clinically. That's why frequent MRIs are important.

      Clinically, I try to remember a few simple things to monitor for PML. I use an acronym, MCP for simplicity, as follows:
      M .. motor
      C .. cognition
      P .. personality

      Motor, or physical activity, the brain and muscles working together, large muscle groups, or small

      Cognition, the activities of thinking, understanding, learning, and remembering

      Personality, changes in behavior, emotions

      I try to be sensitive to changes in Motor, Cognition, or Personality. Everyone has minor day to day changes, with PML changes are not minor, they are major and get worse progressively and quickly.

      The mathematical chances of PML have been stratified and estimated as best as possible according to 3 criteria... JCV titers, prior use of certain immunosuppressants, and number of Tysabri infusions. The estimated risk charts are widely available and should be understood by everyone on Tysabri. If this information is unfamiliar be sure to go over it Monday with your doctor.

      I know it can be very alarming whenever new symptoms appear because you don't know what is happening or how it may progress. Sure, it is concerning, how could it not be? But also think about how many times in life the worst didn't happen. How many times have our fears gotten way ahead of reality and the worst didn't happen, after all? That has happened to all of us, I believe.

      You have life, you are thinking well because you are concerned, probably you are functioning pretty well physically, your emotions are stretched because of these new symptoms but realize that you do have MS and because you have MS these symptoms can and do sometimes occur.

      You are concerned about vacation or going somewhere on Wed and you wonder if you will function well or even be able to make it. Please listen carefully here, won't you? Make absolutely certain you talk to the doctor about your trip! Be sure to express how much this trip means to you and ask for their thoughts about a short course of steroids to ensure you will be able to handle the trip successfully. 5 or 6 days of oral steroids is quite commonly prescribed. I realize some people freak out over even a short course of steroids but I guarantee your doctor won't because they know better. You may and pretty likely would have a more enjoyable and safe trip.

      Lastly, know that I am praying for you. And my prayer to God for you is that peace will settle into your heart and mind like warm sunshine at noon and radiate into every fiber in your body. I'm praying that comfort will replace anxiety with the knowledge that peace brings strength, the strength your body needs to resist MS. As your mind and soul (the seat of the emotions) find rest, so will your body and your heart will be better for it.

      You are a wonderful person, I am certain, and you have an excellent future, don't worry about it too much right now, just let it unfold and adjust as needed. You are allowed to be concerned and you are allowed to rest from it, too. I believe things will turn out much, much better than you may presently consider.

      My prayer and desire is for your health, for your peace, and for your own assurance that you will be ok. Don't allow fear of tomorrow to rob you of enjoying life today.

      My heart is yours in all I've said, I'm sure I missed in places and said things poorly, please do excuse me where I have. I think you will be fine and this is likely MS acting as it sometimes does.

      Best to you, be well and allow your mind to rest.

      Comment


        #4
        Hi teekybird,

        I don't have time to follow up right now but I did want to say something which isn't said often enough and that is that infections are a potent trigger of MS activity and especially upper respiratory tract infections.

        It is an old study that doesn't get talked about but you can Google, "Influence of infection on exacerbations of multiple sclerosis" and see that infections make MS worse.

        A simple fact we have to refresh every once in awhile.

        Best to you, teeky!

        Comment


          #5
          Thank you so much!!!

          I cannot begin to express my gratitude to both of you for reaching out, sharing your experiences, reminding not to panic, and making me feel heard and understood. I had tears streaming down my face . . . In a good way.

          I will write more tomorrow but before I turn in I wanted to say a huge thank you, Teekybird and Myoak, for your wise words. You have helped me feel less frightened already. Xoxo

          Comment


            #6
            Chatmagique,

            I must tell you that your thank you was as elegant as can be expressed. Tears have an eloquence all their own. Your beautiful expression touched my heart wonderfully.

            Just a reminder... be well armed and prepared to make a case for your vacation, and then make the case. To be on the safe side and not get sidelined during those days a short course of steroids will not hurt you at all. An important part of being healthy is enjoying a vacation with loved ones and making enduring memories which will sustain you in the future.

            Have fun! Try overdoing it, be daring and make your vacation an adventure no one with you will forget! Be devious and mischeivious if you must. Sorry, just my thoughts, you will be fine and don't worry about your body, your body will get straightened out. You can make whatever adjustments when needed, if needed at all. We are always doing that to some extent whether we have MS or not.

            Your kind response was so rewarding, I will never forget your lovely expression of gratitude, it means so much to me.

            Comment


              #7
              Update

              Thank you again, Myoak and Teekybird, for your kindness and commiseration.

              I saw my neuro's PA, who is very good and knowledgeable (I go to the Rocky Mountain MS Center in Colorado). She wasn't sure whether this is a relapse or a surfacing of symptoms from past damage. She did not think it looked at all like PML either.

              But, before I even made the case for it, after she heard I was leaving Wednesday on a family vacation, she recommended a series of oral steroids and an MRI of my brain and spine, as well as a JCV test and a test to rule out Tysabri antibodies.

              The tricky part is that tomorrow is my daughters birthday, and we leave on Wednesday, and my next infusion is a week from Saturday. So I decided to grab the only possible MRI slot which is at 9:30 tonight. Alas I live about 45 mins from the hospital so I decided I send my hubby and daughter home and wait around at the hospital for 6 hours. Then I'll take a can home at midnight.

              Whole family is worn out. Our daughter gets very anxious about my MS so I realized it would be better to send them home.

              Right now my symptoms are manageable. It's whether they will get worse soon as part of a full blown relapse that's unpredictable.

              Myoak, thank you for sharing that great line, "Courage is fear that has said its prayers." That has stayed with me for several days now.

              Comment


                #8
                And then I had an allergic reaction to the contrast dye. Have had it before with no reaction. So they weren't able to do the contrast portion of the MRI which is needed to detect PML and active lesions. Instead I got to stay in the ER for observation for three hours. And had a panic attack in the car on my way home. Boo.

                Comment


                  #9
                  Hello Chatmagique,

                  What a past few days you have had. I bet it feels wonderful to be at home and celebrating you daughter's birthday. I hope your vacation is adventurous and restful. Everything will work out, keep your peace, and in any difficulty which may arise I hope your first thought will be... "for this I have peace".

                  The MS center where you go is excellent! You could not find a more qualified staff and I am so glad they expressed very little concern about PML in your current symptoms. And, they are checking all the right things. People sometimes develop neutralizing antibodies to Tysabri so, of course, they are testing for that possibility and will take you off the med if that turns out to be the case.

                  Also, I did want to tell you that PML can be identified on MRI without contrast. In fact, my wife only has contrast every other MRI because PML can be identified without it. Contrast is great for monitoring MS disease progression but according to the director at the clinic we attend, a neuroradiologist can identify PML without contrast, I trust he would not have said it if it were not true. BTW, my wife has been JCV positive for years, since the first JCV test came out a few years back.

                  You had an extremely long day under a lot of stress so it is understandable how things could overwhelm you on the way home last night. I'm sure you are feeling better by now and things are beginning to fall into place. Your doctors are monitoring you quite well. Let them do their jobs in taking good care of you. For your part, be a good patient; breath in peace when you feel anxious, literally inhale, thinking of peace flooding into your body as you take a breath... and always remember, "for this I have peace".

                  Take a break and enjoy your vacation. Worry is one thing we can procrastinate with benefits! You are too busy to stop what you are doing to worry, anyway.

                  Chatmagique, your doctors are on the job, they will let you know what is going on and what to do about it. Pretty cool they were ahead of you already with the oral steroids! They have you, let them do their jobs.

                  Your job is to plan and execute your vacation. I think you will enjoy a wonderful time. You already have seen fears are worse than reality. Take that lesson to heart, possess it, keep it and use it whenever you need to.

                  Take a break, kid, you deserve one! You will have a great time.

                  Comment


                    #10
                    Myoak,

                    You have reassured me (again) immensely by mentioning that PML can be detected without contrast. Thank you! The radiologist I asked about it last night was a young medical resident and not an MS expert.

                    I have no true reason to believe I have it since my most recent JCV test was negative and my titer has ranged from .14 to .17 at the highest. Still, I've read about the rare cases of seroconversion despite recent negative results, so I do want the reassurance.

                    I hope my JCV test comes back very soon and the MRI results even sooner.

                    Myoak, how is your wife doing with MS? I read on another thread that she has been in Ty for many years and it has been a miracle. Does she have any disability from before she started Tysabri? I wish the very best for her. I also know that she is clearly extremely lucky to have such a kind and generous and smart person like you for a husband.

                    Comment


                      #11
                      Originally posted by Teekybird View Post
                      Hi,
                      I am constantly worrying about what symptoms mean in relation to tysabri and its effectiveness.

                      I'm not a doctor, and it sounds like Monday you will get better answers from your Neuro. So, these are just my thoughts.

                      I highly doubt that the feeling in your feet is any indicator of PML. (try to relax on that one). I would consider, extreme disorientation, fever, headache at the base of your head/neckline more worrisome.

                      I am not sure myself how to interpret symptoms. I'm constantly worrying myself about if it means the tysabri isn't working, if there will be new lesions on my next MRI etc. Being pretty new at it myself I don't have all the answers.

                      My understanding would be that since the sensation in your foot has gone on for longer than 24 hours, that it is a new symptom. I'm not 100% sure if you can call that a relapse though.

                      In my case, I have been extremely fatigued after having a bad stomach virus/flu with awful diarrhea the first week of February. Now, a month and a half later, I'm finally feeling a bit more 'normal.' I thought that the symptoms of fatigue would count as a relapse, but my neurologist did not think so. She said "you'd know if you were having a relapse."

                      So, I like you am really confused. It seems like all of our annoying little "invisible symptoms" for the most part are just part of MS? but not necessarily meaning that we have a relapse? I definitely do try to pay attention t if varying symptoms I have last 24 hours or not though.

                      Hopefully more will respond here.
                      Teekybird, I'm sorry for the delay in responding more directly to you. You describe the confusion about symptoms versus relapses very well. I can relate to everything you said above. I was glad to read that you were feeling more normal now but sorry for your fatigue period after that nasty stomach bug. Like Myoak said, infections can definitely trigger symptoms. My neuro said they can either trigger a relapse or a pseudo relapse. When your system is worn down by fighting off an illness, it has less reserve to compensate for neural damage. So it's highly possible that your brain is great at compensating most times but that the GI illness wore your body out. Heck, even people without MS can feel a lot of fatigue after a bad illness.

                      Other than the recent fatigue, how are you feeling otherwise?

                      Comment


                        #12
                        Chatmagique,

                        The center where you go is going to read the MRI right away and if anything is amiss they will contact you right away in the case of PML. So if you don't hear from them, they saw nothing of immediate concern, I feel certain of that. That facility is not slack in caring for MS patients and the issue is important. The MRI was last night so they have read it. You could always call and ask for the results.

                        My wife has only minor MS problems. Before Tysabri some of her flare-ups were vicious. For her, the drug has worked well, I would hesitate to call any MS treatment a miracle, it is just an uncomfortable word for me. But the reality is this... my wife leads silver sneaker exercise classes at the YMCA 4 days a week. Her timed 25' walk is faster than 10 years ago. She has bladder issues, short term memory fluctuations, occasional stabbing pains around her eyes, occasional numbness in her face (feels like she got punched, as she puts it) plus, sometimes heaviness in her legs, but it would be nearly impossible for someone just meeting her to know she has MS. But MRI is very clear that she does have MS.

                        In our opinion, Tysabri is the main reason for her good health, although we believe there are many components to good health and each small thing added together helps improve health. No one does everything they should do but keep doing what you know to be healthy, allow yourself to fail, no one is perfect, and begin good habits again after you do fail.

                        Chatmagique, your words were very kind and very much appreciated.

                        Comment


                          #13
                          Some words of wisdom that my first neuro passed on. The first two years following diagnosis can be a roller coaster of emotions, all driven by various stages of grief. Likewise, if/when disease progression occurs, the cycle starts again. The more I am able to acknowledge my fear, but not let the fear take over my life, the better my quality of life. I can't control some things in life, only my reaction to it.

                          I try to remember his words. Since you are pretty new to a diagnosis, it is not uncommon to question all that you feel, wondering if relapse or progression.

                          You are fortunate to be on Tysabri so quick after diagnosis. You are on the strongest medicine early in the disease course. The fact that you are JCV negative, is a big win. I have been on Tysabri for 3 3/4 years and still negative. Not everyone converts.

                          And it sounds like you are in great hands with your medical care.

                          I hope you get to enjoy your vacation. Take a break from MS and enjoy your family.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            Thank you so much, Kathy. Those were indeed very wise words from your doctor. I guess it is still early after my diagnosis and I am definitely still adjusting and learning how this disease will affect me.

                            Honestly, think this relapse has jolted me into reality and pulled me out of a protracted denial phase, where I've tended to stay ever since I recovered from my first obvious attack in 2014 that led to my diagnosis.

                            So far I've gotten all my latest results except my JCV. MRI without contrast showed no changes. Mild burden of lesions overall (but they've told me a firm number of brain lesions). Still have just one lesion (old) in cervical spine. No PML (I know that was a slightly irrational fear given the odds, but it's scary stuff knowing some people have converted rapidly). And no Tysabri antibodies. And all my other blood work looked normal.

                            I'm just a newbie, I guess, learning what it all means for me.

                            I can't thank you all enough for being here and sharing your wisdom and experiences. It really, really helped me so much this week. Bless you all.

                            The steroids haven't yet helped my bilateral foot numbness and hand coordination issues, but I know that often happens after you stop. The symptoms actually got marginally worse, but who knows how much further they might have progressed w/o steroids. I shall wait and see and try to keep calm.

                            Comment


                              #15
                              Originally posted by chatmagique View Post
                              I guess it is still early after my diagnosis and I am definitely still adjusting and learning how this disease will affect me.

                              Honestly, think this relapse has jolted me into reality and pulled me out of a protracted denial phase, where I've tended to stay ever since I recovered from my first obvious attack in 2014 that led to my diagnosis.
                              I am so glad that all good news to date. All positive results to celebrate.

                              As for steroids, sometimes with sensory symptoms, steroids don't do too much. I never did get relief from them for numbness and tingling, but did for pain and for what I will call "dropsies", where I would drop or throw things I picked up. (I once bounced my phone off the back of a man riding in the seat in front of me on the train - he never sat in front of me again. He was the same poor man I tripped and fell into when I was having a bout of vertigo a few months before. He started to look where I sat and went rows behind me - he probably thought I was trying to pick him up or something). I hope you do get some relief with time.

                              I just want to reassure you that denial is a normal part of the grieving process. I stayed there for a while, so my neuro sent me for 2nd opinion at Univ of Pennsylvania MS clinic to help me move past it. But even then, I still had it Easy to do when life returns to normal. So you are in lots of company with denial.

                              I like my new neuro, but do miss my old one (retired). He was pretty in tune to where I was, legitimized my fears and sadness, but addressed them with a reality check. But he also give me a kick in the but when I needed it to get me back to living and enjoying life.

                              Hang in there. The first couple of years is such an emotional roller coaster until you finally reach that healthy acceptance of the diagnosis, but not obsessing about it. I don't mean to imply you are obsessing, I just know how I was. It was so tough for me to educate myself and find support, without it consuming me. But thankfully, eventually I found a balance.

                              Have a great vacation.
                              Kathy
                              DX 01/06, currently on Tysabri

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