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    steroids didn't work

    The first time I took steroids for double vision, it restored my vision within a few days. I had a big flare in January with right side weakness, extreme head to toe numbness, spasticity, and pain. I did 4 days of solu-medrol and it did absolutely nothing. It's been 5 months and I'm not better. I had to go on temporary disability, and this flare has been devestating physically, mentally, and financially. Why didn't steroids work?

    #2
    Originally posted by pyrmama2 View Post
    Why didn't steroids work?
    The steroids probably DID work... at what steroids do. Unfortunately, a lot of people have a mistaken idea idea about what steroids do and are supposed to do. So when steroids don't do what they aren't *supposed* to do, people say they didn't "work" and blame the steroids.

    Originally posted by pyrmama2 View Post
    The first time I took steroids for double vision, it restored my vision within a few days.
    Actually, the steroids did NOT restore your vision. Steroids reduce inflammation. They don't heal anything. They HELP to promote healing by providing a quieter environment in which the body's actual healing processes can take place. Your double vision resolved when the damaged nerves were able to recover their function in an environment of reduced inflammation. The steroids didn't do anything to heal the nerves or restore your vision. Because steroids don't do any healing, they have NO effect on the final outcome of a flare. Research has shown many times that the end result of a flare is the same whether the flare is treated with steroids or not treated with steroids at all.

    The mistake people make about steroids is that they think steroids affect the final outcome. They don't. So there's no reason to treat with steroids if the only hope is that they'll "work" and "make it better." The benefit to steroids is that they *can* -- but there's no guarantee -- reduce the healing *time* and shorten the duration of the symptoms. And they do that by providing that quieter environment that allows the body's own healing processes to take place. And when someone has extensive debility from a flare -- like you do -- there's great benefit in restoring (or trying to) as much function as possible as quickly as possible.

    So THAT'S why your flare was treated with steroids. In your position I would have done exactly the same thing. And I have done it several times. Here's the critical point. IF not a lot of damage has been done and steroids are administered quickly, that quieter environment can allow nerves to heal quickly and fairly completely. BUT IF too much damage has already taken place before the steroids are administered, there's too much damage to overcome and the nerves can't heal.

    Sometimes healing is actually fairly complete, just slow. Sometimes the amount of healing is limited because some of the damage is *already* permanent. Sometimes all of the damage is permanent and there is little to no recovery. All of that damage happened independent of the steroids, and there's nothing steroids can do because they don't heal anything on their own. And when steroids don't do something they aren't supposed to do and can't do, it can't be said that they didn't "work."

    Originally posted by pyrmama2 View Post
    I did 4 days of solu-medrol and it did absolutely nothing. It's been 5 months and I'm not better.
    I think we've established that the Solu-Medrol probably did quite a lot of what it does. It just wasn't what you wanted it to do. So you can let them off the hook now. :-) Five months isn't really enough time to recover from a body-wide flare. That's not realistic. Recovery can take years. It took me *8* years to recover from a large spinal cord injury. Your body *wants* to recover, and it will to some degree if you give it a chance. But it can't if you keep going back and re-embedding the injury by focusing on it over and over and over. Instead, try embedding your *recovery* by talking about THAT over and over and over. Your brain will go after whatever you tell it to go after. So why not tell it to go after something you want instead of something you don't?

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      #3
      Hi pyrmama2,

      For weakness you might consider working with a Physical Therapist(PT). PT and exercise are both important for regaining and improving strength and mobility. Your Neurologist can give you a referral for PT.

      There are symptom management medications that can help some symptoms. There are very few symptom management medication that have been FDA approved specifically for MS, most of the medications prescribed for MS symptoms are used "off label." Muscle relaxers are used for spasticity.

      Exercise and PT is helpful for MS symptoms such as fatigue, spasticity and pain. Some people have had improvement in numbness with Neurontin, but it can be hit or miss.
      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

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        #4
        Good advice. I just never have delt with any flares this serious. My 'flares' were so minor for the 11 years that I have been diagnosed, I wasn't prepared for this.

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          #5
          Sorry you're feeling like this, how frustrating for you. This won't help with your current issues but if you have to do the steroids again maybe ask for 5 days of IV with an oral dose to follow, tapering you off slowly. I've only had one flare that left permanent damage (left eye is blind) and I didn't get the oral taper. It was my first flare, the one that led to the DX, so I didn't know about the oral. I hope you get some answers you need and end your suffering.
          Jen
          RRMS 2005, Copaxone since 2007
          "I hope to be the person my dog thinks I am."

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            #6
            Originally posted by Cat Mom View Post
            Sorry you're feeling like this, how frustrating for you. This won't help with your current issues but if you have to do the steroids again maybe ask for 5 days of IV with an oral dose to follow, tapering you off slowly. I've only had one flare that left permanent damage (left eye is blind) and I didn't get the oral taper. It was my first flare, the one that led to the DX, so I didn't know about the oral. I hope you get some answers you need and end your suffering.
            Jen

            Originally posted by Cat Mom View Post
            if you have to do the steroids again maybe ask for 5 days of IV with an oral dose to follow, tapering you off slowly. I've only had one flare that left permanent damage (left eye is blind) and I didn't get the oral taper. It was my first flare, the one that led to the DX, so I didn't know about the oral.
            This is making that mistaken implication that steroids -- and in particular an oral taper -- have some effect on the final outcome of a flare. Research has shown that steroids have NO effect on the final outcome of a flare.

            Further research has shown that an oral taper also has NO effect on the outcome of a flare, and oral tapers are no longer recommended. If anything, the additional steroid ingested with a taper adds to the risk of additional steroid damage -- diabetes, bone death, osteoporosis, glaucoma -- for no benefit. Does that taper still sound like a good idea?

            The practice of oral steroid tapers came from diseases like lupus and rheumatoid arthritis that sometimes show rebound flares of inflammation after sudden cessation of high dose steroids. Many years of use of high-dose steroids in MS have shown that MS doesn't have rebound flares. No rebound, no need for a taper. Doctors who don't keep up with practice recommendations might still prescribe tapers, but they're not in the patients' best interest.

            I take high-dose steroids 4 times a year and I haven't done a taper in at least 10 years. My doctor wouldn't prescribe one even if I asked for it.

            And certainly, long-lasting effects after a flare has nothing to do with whether a relatively small taper was done 5 months before.

            So no benefit plus additional risk of harm has eliminated the outdated practice of an oral steroid taper.

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              #7
              Sorry to hear, it also left me with the side effects, but it works in the short run. I have seen people with terrible side effects and i no longer used them

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