I Don’t Think I Fit Neatly Into One of the Four “Boxes” of MS

So I’m always amused when doctors ask me how are your symptoms. Any changes, do you think you are in a flare or relapse? I’m amused because I don’t know how to answer that question and the more I think about it (and the answers I get from doctors about how to tell if it’s a flare or not) makes me think I have a “new” type of MS.

My MS seems to come and go and when I say that I mean literally minute but minute(s), but on a daily basis. Let me explain because it doesn’t make sense even to me when I read it back.

My MS kicks in…when I wake up or when I’m stressed or when I’m hot or when I’m cold or when I’m tired or when I’m doing a bit of this and that around the house or when I shop for groceries or when I go to my doctor appointments (stress).

Now, that being said, when I say act up I mean I have symptoms daily but they could be different or the same. They could last for a few minutes (as in I stand to walk and my leg goes rubbery and this could last a few seconds to a few minutes and it could happen once a day or several times a day). Or when all of the sudden my leg starts to drag. Again, could last a few minutes or a few hours. My blackouts (not passing out, just blacking out enough to almost hit the ground – ok, hitting the ground a couple of times) happen almost daily for the past several months but some times only 2 or 3 times a day and some times every time I stand up. My right leg tremors, but that seems to be random…I could go days or weeks without it doing it and then it does it almost all day.

I’m definitely in pain 24/7 (some due to non-MS issues), the degree changes by the hour or some times half hour and where the pain is changes daily. My fatigue comes and goes. I could go days without it and then BAM! Have it for several days or just a few hours but severe enough that I can’t do anything but cry because it creates more pain.

I guess the point I’m trying to make is how do you answer a question or know when you are truly in a flare/exacerbation/relapse if you go thru this constantly – I could give more examples but you get it -.

Some symptoms lasting 24 hours or less or up to a week; and some days they are worse than others. So we all know that a relapse is if you have “new or worsening symptoms that last more than 24-48 hours”. So is my case some sort of new MS? How would I know…my answer to my docs is that I ALWAYS feel that I’m in a flare/relapse, and then they go into the whole “new or worsening symptoms….” speech, which just leaves me unsure of whether or not I am in a constant relapse, a relapse every other day or this is just MS.

I can remember back in November of 2017, I had almost an entire month of “feeling better”. I felt so good (still with pain but the other MS crap was almost non-existent) that I thought some how I was cured of MS. Maybe the Copaxone cured me, maybe my prayers cured me, maybe my eating healthy cured me…I don’t know but it was an amazing month for me…for just about 3 weeks and then BAM! What the what? I felt like I was hit by a mack truck doing 100 miles an hour!

I finally called my MS doc and they had me come in for 3 days of IV infusion. I’ve been going down hill steadily with the stuff I outlined above since then (oh, add new pain that my 2 Orthos, and PM doc are not sure what’s going on yet, even with an X-ray and MRI, so it’s the lets try this, then this, then this before we do anything else mode).

So, I would really like to hear back from anyone who goes through what I described as how my MS is. Am I the only one like this, is this a new type of MS? It’s like all the docs agree that no 2 MS’er are alike but then they try to fit us all in 4 neat little boxes of RRMS, SPMS, PPMS, and PRMS.

I can’t answer a question or feel I need to run to the hospital or get an IV infusion (which I feel I need almost daily just to get the pain under control and the MS flare or not flare) if I don’t know based on what I feel is almost a constant relapse but to my knowledge and when I mention that I think I’m always in a flare they either roll their eyes or give me the “a relapse or flare is when you have a new or worsening symptoms…” So, what box do you neatly fit into and are there more boxes we should open?

As always, I’m hoping all of us going through this horrible disease finds a way to cope, live with and manage to a degree where you have a good quality of life!

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