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I don't understand pseudo-flares.

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    I don't understand pseudo-flares.

    I've been on Tec for 18 months, and per my last MRI I have had no new lesion formation. (Next one is in June.)

    I have issues though - I'm guessing these are pseudo-flares. My leg goes completely numb for a day, etc. However, I'm having this one that keeps coming back. I have extreme (EXTREME!!!) pain in my humerus right above my elbow, and it radiates down my arm into my hand, even into the fingers. I can still move my hand and my arm, it just hurts. It hurts so badly that last night when this happened, I must have somehow sliced open my ring finger on something, and had no idea I had done it until I saw the blood and the open skin.

    This is the second time in a week this has happened. It always goes away within 12 hours or so, usually after I sleep. My neuro said not to call her until a new issue has lasted more than 48 hours (unless it's extreme).

    Is this normal? Is it normal for the same kind of pseudo-flare (assuming that's what I'm actually dealing with) to keep popping back up?

    Thanks.

    #2
    Transient neurological symptoms that less for 24 hours are often considered pseudo-flare ups. A pseudo-flare has a stimulus that causes a temporary increase in symptoms until the stimulus is removed. Overheating, excessive fatigue, elevated stress levels or getting an infection are common stimuli that can cause a pseudo-flare. For example: A MS patient gets an infection that causes a fever. The fever elevates the body temperature and causes an increase in symptoms. Once the fever breaks the increased symptoms go away.


    Is it normal for your neurologist to be dismissive of your pain? Do you have other options for neurological care? If so, you may want to schedule a visit and see if the fit is better. I would not leave your current neurologist before you have a viable alternative, but it's something to consider.
    Some times we blame too much on MS and fail to get appropriate treatment.

    In your situation, I might visit my primary care physician (PCP) and discuss the pain with them. They can evaluate you and decide what, if any, treatment is necessary. If this is nerve pain a prescription for Cymbalta (Duloxetine), Gapapentin (Neurontin) or Pregabalin (Lyrica) may be in order. If the problem is physical or structural then your PCP should hopefully point you in the right direction. I was under the care of a pain management doctor for a number of years and their focus is improving your quality of life by reducing your pain. Being in chronic pain is a terrible way to live.

    Please keep us informed of how you are doing and I wish you well.

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      #3
      She really isn't dismissive. I'm the source of that problem. I am so very resistant to medication - it would take a lot to get me on pain medication. Taking the Tecfidera is about all I'm willing to do. I have taken pain medication before for actual flares, though I hated to. I don't do well with long term, chronic pain, but I can handle even pretty severe pain for a short period of time. If I can ride out these pseudo-flares and hold on to the fact that they are going to go away, I can deal with it.

      I'm new to this disease (within the past handful of years) and I've been very blessed that I haven't had to deal with a lot of actual flares. But these pseudo-flares come up every few weeks, and this has just been a bad week where I've dealt with the same annoying thing twice. I will talk to my GP about it. I see the neuro in a few months, so unless this becomes more frequent, I'll probably wait.

      I wish I could pin down a reason why these are happening. I don't feel like I'm overly hot or having a lot of anxiety, etc. I guess there isn't much about this disease that follows rules, and I shouldn't expect these pseudo-flares to be any different. I am super, super, super thankful when they turn out to be fake.

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        #4
        Besides flares and pseudo-flares are your daily symptoms that may come and go.
        This is caused by progression and does not have to be tied to a flare (real or not).

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