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    How to tell when an attack is over?

    My first attack started on April 20th, and my neuro's been fighting it ever since. I was officially diagnosed on July 1st by an MS specialist, and he ordered another round of steroids since he too thinks it's a particularly aggressive attack, and not usual for someone's first presentation of MS (nearly every symptom of MS appeared within a few weeks of each other, most of them getting worse over time). They're both determined to get it under control, and want me on aggressive medication.

    Currently waiting to hear back on Ocrevus, but keeping my fingers crossed that I'll be able to go on it. In the meantime, I finished my 5 days of IV steroids last week (5th round of steroids overall in the past 3 months), but after getting really sick from them, they're just the same as before the round of steroids.

    How do you tell when an attack is over? I have no baseline to compare this to - I was fine until all these symptoms appeared at once. I still can't walk right, and have a tremor/shaking in my right foot that makes me limp most days. My right hand is near useless half the time (I can only trust my thumb and pointer finger; the others decide when they want to stop working), the fatigue is overwhelming, I have trouble getting words out in the right order, I have a numb/tingling wave sensation that I'm pretty sure is L'hermitte's about 85-90% of the time, and ON has massively attacked once and recurred twice within 2 months. The lower back pain that comes some days is horrible and nothing helps, and the spasticity that freezes up my hands is unbearable and makes me want to cry. Some of these symptoms appeared a month or two into the attack, which is why they think that it's slowly been escalating even though certain things, like the widespread numbness, have improved somewhat.

    On my best day, I might walk almost normally but my right hand and foot will be numb. There's a lot more that fluctuates, but the only thing that's actually improved since all this started is the full-body numbness - it's just my feet and hands that get numb mostly, though I've had some days here and there where my back is numb again.

    I can't do more steroids. I'm so sick from them, and I've caught viruses twice while on them, which leaves me so incapacitated that I can't walk. My neuro and the specialist think that I'm still in an attack, but the steroids haven't really helped much past the first two rounds (the third round did clear up the ON, but then it came back, hence the fourth round, which again cleared up the ON but did nothing otherwise). Do steroids just not help some people? Should I start wondering if this is my new normal? Do attacks just plateau sometimes and eventually taper off over a matter of months?

    Some people have told me their initial attack lasted up to 6 months, but I'm wondering how I'm supposed to tell that it's over. I can't deal with it if this is my new normal. I went from completely functional and commuting to work via bike to struggling to make it down the hallway at work, and never knowing if something I pick up is going to get dropped. I know some people feel a lot better once they get on a DMT, but there's no guarantee for that since they're not meant to treat the actual symptoms or stop attacks.

    I've handled this pretty well. I spent most of my first month crying, and barely blinked when my diagnosis changed from CIS to MS, because I was expecting it. I've been patient, because I know this can take time. But I'm just starting to freak out again, because the thought of this being the minimum debility that I'll have for the rest of my life is just ridiculous. I'd expect this years down the line, but not right off the bat. I just need to know if there's a way to tell for sure, or if it lingered like this for other people. This can't be the new me.

    #2
    Hi ambicat,

    I am sorry you are still in a relapse and struggling. I personally have not experienced what you have. Once, I needed two rounds of IV steroids, but that was it.

    There are some people that steroids did nothing for. I have heard of people getting better up to a year after start of flare.

    Have they done any follow-up MRIs with contrast to see if lesions are still active? It sounds like your neuro believes they are still inflamed since treating with steroids. The steroids can help reduce the inflammation, which is why some people feel better after. They don't change the outcome of a flare, but may help get thru it a little quicker. I have always been told the earlier started in a flare, the more effective steroids are.

    If you have had five rounds of steroids, I can imagine how sick you must feel. Are you sleeping? Fatigue can exacerbate symptoms. What are they doing for the spasticity?
    I remember your post regarding career decision. I thought you were symptom free. Sorry that I misunderstood that.

    I hope the Ocrevus is approved for you and you can start soon. Let us know how you are doing.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Hello AmbiCat

      So sorry to learn that you are dealing with an aggressive relapse, and seemingly no remission at this time.

      Is it at all possible that you have a UTI?

      Urinary tract infections can cause very severe and sustained relapses in some persons with MS.

      In any case, I am wishing for you a remission and relief from your symptoms.

      Take Care
      PPMS for 24 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        MS presents us with so many challenges -- challenges that those without a chronic illness wouldn't be able to understand. I often empathize with those who are in limbo; I remember what it was like to be in limbo for almost two years.

        In your case, you have a totally different challenge -- unrelenting symptoms that might be an aggressive MS flare, or might just be residual symptoms that could become your new "normal". That, although something I haven't experienced, is also something that I am sorry that you have to experience.

        I can't really speculate with much helpfulness or advice for you.

        My flares used to be somewhat aggressive, and were also treated by steroids. One 5-day round of 1000 mg prednisone (I didn't do very well with IV solumedrol so I requested oral prednisone instead), followed by a 12-day taper was usually enough for me. Steroids didn't rid me of my symptoms immediately; it often took another couple of weeks after my steroids were over for the symptoms to disappear. But, that is how I knew that my flare was over -- my symptoms went away. That hasn't worked for you.

        Koko had a suggestion that's worth looking into. An untreated UTI can mimic the symptoms of an MS flare. Perhaps what's going on isn't a flare at all, but a urinary tract infection?

        I hope this nightmare is over for you soon.

        In the meantime, take care of yourself as best as you can.
        • - Eat healthy. Eat lots of vegetables and fruits. Drink lots of water (filtered, if possible). Consider organic produce, grass-fed meats, free-range poultry, wild-caught fish. Consider eliminating gluten (especially wheat products), dairy and cane sugar and artificial sweeteners (substitute honey, 100% maple syrup or stevia if you need something sweet).

        • - If there are any exercises you can do with all of your symptoms, consider exercising moderately. Even stretching, or simple chair yoga (you can likely find some on YouTube), or something.

        • - Get enough sleep, if you are able.

        • - Listen to calming music.

        • - Consider meditation, mindfulness or deep breathing techniques. Prayer, if that is a part of your belief system.

        • - Pamper yourself in ways that make you feel good.

        Last edited by Mamabug; 07-19-2019, 03:05 PM. Reason: Tried to add spaces in the last section to make it easier to read.
        ~ 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


          #5
          Originally posted by pennstater View Post

          There are some people that steroids did nothing for. I have heard of people getting better up to a year after start of flare.

          Have they done any follow-up MRIs with contrast to see if lesions are still active? It sounds like your neuro believes they are still inflamed since treating with steroids. The steroids can help reduce the inflammation, which is why some people feel better after. They don't change the outcome of a flare, but may help get thru it a little quicker. I have always been told the earlier started in a flare, the more effective steroids are.

          If you have had five rounds of steroids, I can imagine how sick you must feel. Are you sleeping? Fatigue can exacerbate symptoms. What are they doing for the spasticity?
          I remember your post regarding career decision. I thought you were symptom free. Sorry that I misunderstood that.

          I hope the Ocrevus is approved for you and you can start soon. Let us know how you are doing.
          I'm actually having trouble not sleeping too much - I feel like passing out all the time no matter how much sleep I get.

          The specialist prescribed Baclofen for the spasticity, and it does help a little with the stiffness, but not all the way, and it doesn't do anything for the weakness (not sure if it's fatigue or just limb weakness in my hand - I think it may be part of the fatigue).

          No MRIs since the first ones, but I'm not sure my insurance would cover a second set anyway. I'm also kind of scared to know if more lesions have become active in my brain. The specialist thinks this has been going on a lot longer than this attack (I was having a massively severe surge of daily migraines about 6 months leading up to this attack, and he thinks that was an early warning sign), so maybe that's one reason the steroids aren't doing much.

          Comment


            #6
            Hi AmbiCat.

            I am rather surprised your Neurologist has done 5 rounds of steroids. I know I mentioned this to you before but; steroids may or may not help, sometimes an exacerbation simply needs to run it's own course. With time, even without steroids, exacerbations can resolve. Steroids are not recommended for symptom management.

            A remission can be partial (residual symptoms/difficulties and possible disability) or a remission can be complete (no symptoms) with partial being the most common. It is possible to see improvement even as far out as a year or two. With this disease patience is truly needed.

            If you have seen some improvement of some of your symptoms the that would indicate remission. Again, having residual symptoms and difficulties is common.

            Why has your Neurologist not sent you for Physical Therapy, Occupation Therapy, Message Therapy or which ever he feels would be more helpful? These specialties help with rehabilitation from exacerbations and/or symptoms.

            The specialist prescribed Baclofen for the spasticity, and it does help a little with the stiffness, but not all the way, and it doesn't do anything for the weakness (not sure if it's fatigue or just limb weakness in my hand - I think it may be part of the fatigue).
            It is very possible Baclofen is adding to your fatigue. Baclofen is a muscle relaxer, it will not help with weakness that is what a Physical Therapists is for. Massage Therapy is helpful for spasticity.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #7
              Originally posted by KoKo View Post
              Is it at all possible that you have a UTI?

              Urinary tract infections can cause very severe and sustained relapses in some persons with MS.
              Sorry, I forgot to include my references:

              "Acute relapses may be induced or exacerbated by infection, most commonly in the form of an upper respiratory tract infection (URTI) or urinary tract infection (UTI)".

              https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960762/

              https://www.mstrust.org.uk/a-z/urina...-infection-uti

              Take Care
              PPMS for 24 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                AmbiCat

                I have a numb/tingling wave sensation that I'm pretty sure is L'hermitte's about 85-90% of the time
                Information about Lhermitte's sign: This is when you bend you head down and have sensations such as tingling, vibrations, electric shock, from the spine down. These sensations only last second but can be repeated each time you bend your head.
                Diagnosed 1984
                “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                Comment


                  #9
                  As for a UTI, no, I don't believe I have one. I've had many of those before in my life, so I recognize the signs. I did catch a cold about a month back, and during last week's steroid infusions I caught another virus (this one didn't actually get to the respiratory stage, just stayed as viral pharyngitis). Both of them knocked me on my butt and did exacerbate symptoms to the point where I either almost couldn't or flat out couldn't walk.

                  In terms of PT, yes, my neuro plans on sending me to physical therapy. That's the only thing that'll help my leg at this point, unless it gradually gets better on its own. I'm also hoping it can treat the back pain that I'm positive is nerve-related. I think he's been waiting until I'm on a DMT, for whatever reason.

                  Part of the problem is that the oral steroids I was on were too low of a dose, which may have affected how well they worked. My neuro isn't a specialist (he was treating me for chronic migraines before this), so he threw a much lower dose at me than he should have. I didn't know this until I went to the MS clinic earlier this month. They were clearly strong enough to help the ON (maybe why it recurred, though), but typically too low of a dose for MS attacks. Thankfully, he's not an egotistic doctor and did have a peer-to-peer conversation with the specialist after my appointment, during which he was told what dosage he should be using if I had to go back on oral steroids, and to put me on monthly 5 day IV courses of steroids until I'm on a DMT.

                  The specialist told me that, since I was still having new symptoms appear, and old ones getting worse, he believed I was still in the middle of the attack. Things could have changed since then, but nothing's gotten better in the time since.

                  Originally posted by SNOOPY View Post
                  It is very possible Baclofen is adding to your fatigue. Baclofen is a muscle relaxer, it will not help with weakness that is what a Physical Therapists is for. Massage Therapy is helpful for spasticity.
                  The fatigue is there whether I take Baclofen or not. Baclofen was making me very drowsy the first few days I took it, but it doesn't now, or at least it's very minor if it does. I don't take it every day, just when my hands get bad enough that I can't unbend my fingers. It's not for weakness, just spasticity.

                  I can literally sit at home and do nothing, and I'll be so exhausted I don't even want to get up to make something to eat. I want to sleep an hour or two after I wake up, no matter how much sleep I got, and that's without taking Baclofen. Before this, I had a cup or two of caffeine per day and I was set; now caffeine seems to have no effect.

                  Originally posted by SNOOPY View Post

                  Information about Lhermitte's sign: This is when you bend you head down and have sensations such as tingling, vibrations, electric shock, from the spine down. These sensations only last second but can be repeated each time you bend your head.
                  Yeah, I'm pretty positive L'hermitte's is what I'm experiencing. It's not painful, but my hands get more and more numb the more I look down, because the waves usually go down to my fingers (sometimes down to my toes, but it's more often my hands). I've gotten to where I try to avoid moving my neck forward or down as much as possible. The waves aren't as strong since the specialist prescribed Tegretol for it, and they're slightly less frequent (they were there 95% of the time when I first saw him, and had just appeared two weeks before), but they still happen often. It's just rare for them to be strong enough to make me physically cringe afterward now.


                  I just feel really hopeless at this point. I did find out today that the hospital has a slot open for me next week, pending approval from insurance for Ocrevus. I'm hoping to god that they approve it so I can stop fighting them.

                  Comment


                    #10
                    AmbiCat,

                    You are newly diagnosed and dealing with a boatload of emotions ranging from fear, uncertainty, sad, mad, scared, just to name a few. This really is very normal, we have all experienced these emotions due to this disease.

                    I would like to stress you use caution in the use of steroids. There isn't a lot a Neurologist can do for us and for that reason it's easy for them to jump on the steroid band wagon. What some Neurologist's don't tell their patients is steroids come with some serious side effects.

                    Side effects of steroid use:
                    - steroid induced Cushing's Disease
                    - steroid induced glaucoma
                    - steroid induced cataracts
                    - osteoporosis (weaker bones)
                    - steroid induced diabetes
                    And there are more.

                    Steroids are used for acute exacerbations, however, the more they are used the less effective they become.

                    Anytime someone with MS gets the flu, virus, infection, over does it, or overheats MS symptoms can get worse, this is self-limiting. Once the person cools down, rests, infection/flu/virus resolves symptoms return to what's normal for them. When this happens it is a pseudo-exacerbation, meaning it's not due to progression or a relapse of the disease.

                    Mamabug gave you some good suggestions:

                    - Eat healthy. Eat lots of vegetables and fruits. Drink lots of water (filtered, if possible). Consider organic produce, grass-fed meats, free-range poultry, wild-caught fish. Consider eliminating gluten (especially wheat products), dairy and cane sugar and artificial sweeteners (substitute honey, 100% maple syrup or stevia if you need something sweet).

                    - If there are any exercises you can do with all of your symptoms, consider exercising moderately. Even stretching, or simple chair yoga (you can likely find some on YouTube), or something.

                    - Get enough sleep, if you are able.

                    - Listen to calming music.

                    - Consider meditation, mindfulness or deep breathing techniques. Prayer, if that is a part of your belief system.

                    - Pamper yourself in ways that make you feel good.
                    It can take time for symptoms to calm down with or without steroids. I was in a really bad exacerbation when I was diagnosed. It took me a year of hard work, frustration, tears and anger before my exacerbation resolved. Unfortunately for me, at about that year mark I ended up in my second severe exacerbation which took me another year to recover from.

                    It might be a long road to recovery for you (I don't know) but sometimes it's that long recovery and hard work that brings forth the inner strength you didn't know you had.
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                    Comment


                      #11
                      Yeah, I think it'll be a long road for me. The tremor seems to be somewhat rare now as of the past few days, so maybe the 5 days of IV was worth it. None of the earlier steroid rounds worked on it. That was my worst symptom since it made walking extremely difficult.

                      I've already decided I'm done with steroids. I get steroid-induced acne that lasts for weeks after I'm off them, and it drives me crazy. Not to mention the lingering instability of emotions.

                      If all I have left is intermittent numbness on my right side, occasional back pain, spasticity and general weakness/fatigue, I can learn to live with that. I'm hoping physical therapy can help me gain strength back in my arms, hand and leg. The l'hermitte's...I don't think anything can be done about that beyond the med the specialist put me on, which does help to some degree.

                      I have been trying to eat healthier most days since this started. I force myself to eat regular meals even if I have no appetite, and I've added chia seeds to my breakfast routine every morning, and spinach/avocado to my lunch. Dinner is still a toss up since my hands often aren't working well enough by then to make anything, but I try to make sure and eat veggies most days for dinner.

                      I'm hoping some of this sort of tapers off in the weeks to come. I know it's likely some symptoms will remain, even if they get a little better. I'm okay with that as long as the leg tremor isn't a permanent thing for now.

                      Comment


                        #12
                        Originally posted by AmbiCat View Post
                        he l'hermitte's...I don't think anything can be done about that beyond the med the specialist put me on, which does help to some degree.
                        Lhermitte's is something I have had as a constant companion for 35 years, It causes vibrations/buzzing from my spine down each time I bend my head down. I have never used medication to treat this symptom, I have simply learned to ignore it. In the beginning it scared the crap out of me (and my husband), my husband would tell me to quit looking down/bending my head (HAHA)

                        Glad to hear you will be doing PT. The PT exercises are something that needs to be continued for the rest of your life. Exercise and gentle stretching is so important with MS. It is also important to take things slow until you start improving and/or find how to not overdo it.

                        I've already decided I'm done with steroids. I get steroid-induced acne that lasts for weeks after I'm off them, and it drives me crazy. Not to mention the lingering instability of emotions.
                        These are considered short term side effects of using steroids and will go away once steroids are out of your system.

                        The ones I listed are conditions that are considered long term side effects from steroids, do not resolve and can show up at some point down the way.

                        Take care.
                        Diagnosed 1984
                        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                        Comment


                          #13
                          Originally posted by SNOOPY
                          It causes vibrations/buzzing from my spine down each time I bend my head down.
                          LOL. MS must drive doctors bonkers. Let me explain.

                          I've heard the symptom like you've described from more than one MS patient IRL. I've read it also. I don't doubt you're telling the truth.

                          But for me? I get relief from symptoms by bending my head down as far as I can. Holding that position for a bit and then looking upright, perhaps also quickly shaking my head left-to-right will "reset" some ON symptoms and MS hug-type spasms.
                          59M / RRMS / Dx1987 / Ocrevus

                          Comment


                            #14
                            Originally posted by Golgotha View Post
                            But for me? I get relief from symptoms by bending my head down as far as I can. Holding that position for a bit and then looking upright, perhaps also quickly shaking my head left-to-right will "reset" some ON symptoms and MS hug-type spasms.
                            Oooh thanks for this tip!!
                            All the best, ~G

                            Comment


                              #15
                              Ambicat - you do have a lot to deal with. A new diagnosis is a roller coaster ride. Be patient with yourself. Good luck with PT. It helped me a lot.

                              I was actually told that L'Hermites is a Hallmark symptom for MS. That is what led to my diagnosis. It is the one symptom that is hard to explain by other causes.

                              I have the buzzing/vibration still when I bend my head down. Like Snoopy, I don't even notice most times, just learned to live with it. The first time really felt like a shock every time I bent my head down. Thankfully, that intensity left!
                              Kathy
                              DX 01/06, currently on Tysabri

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