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    MS CONFIRMED

    Hello,

    Today was my second opinion app in MS Clinic.
    ( my story is here : http://www.msworld.org/forum/showthr...ed-no-symptoms )

    I guess, officially , I am a MS victim.
    Started asymptomatic in November, now I have legs tingling. The doc suggested Medrol IV for 3 days 1000mg a day to take care of the symptom, but also to calm down whatever is going on in my brain and spinal cord.
    He also said it it not necessary to do steroid , however the legs tingling might last for few months. So depends how bad it is and how does it bother me.
    We made an app for the infusions, however....

    Is this the right decision? Should I go for an industrial dose of Medrol and possibly have side effects ( I read most of the people have terrible side effects ), or should I just deal with the tingling and let the doctor decide what meds he will put me on . ( I need to do some blood work before he makes the decision) .

    Confused Bosman

    #2
    Hello bosman,

    Your only symptom currently is leg tingling? If yes, my personal opinion would be to not use steroids. Tingling falls into a category of symptoms referred to as Paresthesia. Steroids may or may not help Paresthesia.

    Steroids are not used for symptom management but for exacerbations (relapse, attack, flare-up). the more steroids are used the less effective they can become.

    This link is to a forum here on MSWorld that is specifically about Paresthesia:
    http://www.msworld.org/forum/forumdi...34-Paresthesia
    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


      #3
      Originally posted by bosman View Post
      H
      Started asymptomatic in November, now I have legs tingling. The doc suggested Medrol IV for 3 days 1000mg a day to take care of the symptom, but also to calm down whatever is going on in my brain and spinal cord.


      Is this the right decision? Should I go for an industrial dose of Medrol and possibly have side effects ( I read most of the people have terrible side effects ), or should I just deal with the tingling and let the doctor decide what meds he will put me on . ( I need to do some blood work before he makes the decision) .
      I'd have to agree with the person earlier - are your symptoms confined to tingling? Is it numbness or just tingling? How much of your legs are involved? (Patches? all your legs?) And, most important, is it affecting your walking or movement at all? Are you having any balance issues?

      If tingling with no disability is all you're experiencing, I personally might not opt for the steroids. However, you know your body best - and I'm sure you're worried that it's going to continue to get worse. If it were me, and tingling was all I was feeling, with no other disability, I might take a wait and see attitude. If it progressed to the point where I was starting to have my actual abilities affected, then I'd opt for the steroids. Ultimately it's your choice.

      I'm not sure I'd say that MOST people have terrible side effects. Some do. Some don't. I doubt you could generalize like that.

      I just got off a 5-day course of IV steroids myself, last week. Almost all of the symptoms that were causing me disability have gone away, to my GREAT relief.

      My steroid side effects were relatively minimal -- while I was on the steroids, I had some trouble sleeping, but Ambien took care of that. I opted not to taper off with oral steroids because I wanted to get it over with and not take more steroids just to avoid feeling rotten for a few days. (My post-steroid effects were more bothersome than while I was on them - I still had trouble sleeping, my head swam a bit when I tried to concentrate for work, and I had a strange buzzy feeling for a few days). These were all manageable, and I worked (from home) through the entire course.

      Of course, there can be other complications that don't make themselves known for some time, which I'm sure you're aware of.

      Despite the risks, I don't regret it. But it's really dependent on how uncomfortable you are. My understanding is that steroids don't keep you from getting nerve damage, and they won't help you recover to a point that you wouldn't naturally arrive at in your body's due course - it just helps you get there faster.

      For me, the numbness in my legs caused me issues with distance walking and a bit with balance both of which upset me enough that I wanted them resolved ASAP. Ultimately that's what you have to weigh, yourself.

      Comment


        #4
        For what it is worth....

        My symptoms are similar to yours - except my tingles are vibrations (picture a cell phone on vibrate and hold it next to your leg - yeah that's me in any part of my lower body).

        My doctor and I discussed and we agreed together that if my symptoms are purely sensory and do not affect me in any other way (balance, coordination, general movement etc) that I will deal and not do steroids.

        For me, the major vibrations went away, and I now have "roving parasthesia"....old symptoms that come and go.

        Sorry you are here with us.
        Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

        Comment


          #5
          Hello Boymom123,

          my tingles are vibrations (picture a cell phone on vibrate and hold it next to your leg - yeah that's me in any part of my lower body).
          I understand. I have had buzzing/vibrations from the waist down and yes, that includes the girlie parts for over 30 years.

          now have "roving parasthesia"....old symptoms that come and go.
          That can be quite common and one of the reasons sensory symptoms are not usually treated with steroids.
          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


            #6
            Worth a try to go cold turkey on all milk products of any kind- see if the tingles go away or decrease. For me, it happened in less than a week.

            Comment


              #7
              Hi bosman:

              First, NEVER refer to yourself as a victim again. Never, ever.

              Thoughts and words become actions and habits, and actions and habits become life. We can’t always control what happens to us, but we can control how we respond to it. Do you really want to spend the rest of your life as a victim by training yourself to become one now?


              Right now, there are folks chomping at the bit to insist that MS makes us victims. And you know who they are? Victims who want to convince other people that they’re helpless victims too so everyone can be miserable together and talk about being needing to be validated for their victimhood instead of what’s good about them. And victims spend a lot of time blaming everybody else for making them miserable. Right now blaming me for making them miserable. Is that the club you want to join? If it is, then stop reading right now.


              No matter what happens to you, you are in control of how you respond to it. No one can make you a victim unless you allow yourself – train yourself – to become one, and it starts with the labels you put on yourself. It’s just as easy to label yourself as someone who is resilient and sets the tone of your life by focusing on the things you want and like instead of the things you don’t. You sound like a great guy who has a lot to contribute to the good of the world, so I hope you choose strength and happiness to the last shred of your ability.


              Second, I want to point out that your doctor gave you two reasons to do a series of steroids:
              Originally posted by bosman View Post
              The doc suggested Medrol IV for 3 days 1000mg a day to take care of the symptom, but also to calm down whatever is going on in my brain and spinal cord.

              And he and the other posters have talked about the second. Steroids often shorten the duration of symptoms. But the benefits have to be weighed against the risks. Mild, tolerable symptoms are usually not worth the risk of the accumulated damage of steroids (there are a few exceptions to that). So if the only factor in your case was your tingling, then a decision to skip them might be pretty simple.

              But in your case, your tingling isn’t the only factor, which why your neurologist gave you the first reason to have steroids. Apparently, you have active inflammation, and inflammation is not good.

              Some studies have shown that there is a benefit to knocking out inflammation with a strong, short-term whack of steroids to get the environment quiet again. Also, a few studies showed that steroids administered early in the course of MS can delay the progression for a couple of years.

              The Optic Neuritis Treatment Trial showed that the study subjects treated with high-dose IV steroids had a delay in the onset of clinically definite MS of up to two years vs. subjects who weren’t treated. Other studies showed that patients who had a dose of high-dose steroids every month – in addition to the lower-effectiveness meds that were available at the time – had a delay in progression for a couple of years. But the effect lasted only for a couple of years. That’s what I did early on, and it worked well for me.


              The key to that was that the steroids worked best when done early in the course of the disease. Right now is the only time you’ll have a chance to do the steroids early. If you wait a year, it will be too late to start them early.

              It’s important to point out that the year or two of steroids was in vogue back when the only available treatment meds for MS had only about 30% effectiveness (they’re still in use today). So using steroids in that way is probably not needed now because you have options of meds with much higher effectiveness.

              But you still have the option of an initial whack of steroids to quiet down widespread inflammation. And it’s a good option, which is why your neurologist offered it to you without pushing it. Steroids might also relieve your tingling sensations, but that probably shouldn’t be the primary reason you decide to have them.


              Yes, the side effects of steroids can be really, really awful. (I’ve done high-dose steroids literally dozens of times and gotten through every one of them.) Unless something really unusual happens, the side effects pass within 2 to 3 weeks. You have a higher risk of something terrible happening by just leaving your house in the morning. Everything in life is a trade-off.

              Because of your individual situation right now that the other posters weren’t addressing, you stand to gain some overall, longer-term benefit than another person who might be wanting to have steroids just for symptom relief. And because your situation is a little bit different than the ordinary for MS, don’t hesitate to ask your neurologist about it again if you still have questions.

              And as I said to you weeks ago, be sure to verify everything you read. Your neurologist can help you do that.

              Verify everything except never again referring to yourself as a victim. That one I think you should just go with.



              Comment


                #8
                Hey bosman:
                While I was on my soapbox, I got the order of your doctor's reasoning reversed. But I think you figured that out and you know exactly what I'm talking about.

                Comment


                  #9
                  I was in a similar situation last November

                  My Dx is new, too -- Nov 2015. However, the general neurologist also offered IV steroids (my lingering affects are with my upper body, not my lower as much). I was scheduled for the infusions, then really freaked out about getting such a high dose and called to cancel.

                  I did, however, take a smaller, oral dose (2-seven day packs simultaneously) at the advice of my MS neuro once I saw her, which helped tremendously!

                  I would encourage you to discuss your concerns with your doctor & get answers to your questions that are causing you hesitation. At the time the mega dose steroids were offered to me, I was not Dx'd and the general neuro was neither for nor against them ("you can get this if you want it" was her direction). So it was really hard for me to pull the trigger on such an aggressive (and potentially unnecessary) treatment. Your situation is different.

                  Best of luck to you. I'm sorry for your diagnosis.

                  Cheryl
                  Cranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)

                  Comment


                    #10
                    Thank you for all your advises and thoughts. I read them all very carefully.

                    I will soon come back with the feedback...( lots to think about )

                    Comment


                      #11
                      Originally posted by SNOOPY View Post
                      Hello bosman,

                      Your only symptom currently is leg tingling? If yes, my personal opinion would be to not use steroids.

                      This link is to a forum here on MSWorld that is specifically about Paresthesia:
                      http://www.msworld.org/forum/forumdi...34-Paresthesia
                      SNOOPY- thank you for the info and link.
                      My tingling actually almost went away.

                      Comment


                        #12
                        Originally posted by kw202 View Post
                        Is it numbness or just tingling? How much of your legs are involved? (Patches? all your legs?) And, most important, is it affecting your walking or movement at all? Are you having any balance issues?
                        kw202-it was just tingling. Low voltage It was not affecting my walking or balance. Just annoying .

                        I might take a wait and see attitude. If it progressed to the point where I was starting to have my actual abilities affected, then I'd opt for the steroids. Ultimately it's your choice.
                        I waited. My tingling almost went away.
                        Glad you got some relief from steroids and your issues go resolved. Good luck to you.

                        Comment


                          #13
                          Originally posted by Temagami View Post
                          Worth a try to go cold turkey on all milk products of any kind- see if the tingles go away or decrease. For me, it happened in less than a week.
                          I gave up on dairy about 2 weeks ago.

                          Comment


                            #14
                            Originally posted by jreagan70 View Post
                            Hi bosman:

                            First, NEVER refer to yourself as a victim again. Never, ever.

                            Thoughts and words become actions and habits, and actions and habits become life. We can’t always control what happens to us, but we can control how we respond to it. Do you really want to spend the rest of your life as a victim by training yourself to become one now?
                            Thank you jreagan, for a bucket of cold water on my head. I do not want to train myself to think of me as a victim. I believe I just said that without deeper thoughts and meanings, but I understand what you mean. Sometimes when you think of some situation it becomes real..I want to stay positive, however I am at the stage where it is still hard .



                            verify everything you read. Your neurologist can help you do that.

                            Verify everything except never again referring to yourself as a victim. That one I think you should just go with.



                            I talked with my neuro, who happens to have MS too ( for 40 years)
                            He was ok with the idea of not introducing Medrol just yet. We are waiting for my blood work results and will decide on meds during the next visit.

                            Comment

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