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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • Kimsommerfield
    3 weeks ago

    Hi, I read your story & was so happy to see that I’m not alone with this up & down MS cyclic symptom of confusions!
    I have a friend that also has MS & complains to her physician about the same symptoms we experience. Yet, she gets the cold neurlogical shoulder too as if we are confused or just muddle headed!
    I’ve asked many times since my diagnosis in 2006 why haven’t I had any more testing to see if I’m getting more lessons because I don’t know if I’m having relapses?
    Then my Doctor’s look @ me funny like I’m crazy? Do you get that too?

  • Dede74
    2 months ago

    I completely understand what you are relaying in this article. I constantly go through the same thing with my doctor and it really frustrates me. I am constantly in pain, cognitive issues, etc. I explain to her everytime that there is no particular time that I am feeling fantastic for a week or month. The syptoms never go away, I have had MS for over 10 years now, plus my older sister has it also. She has progressive MS, I have explained to her about my issues and my problems with my doctor. I am in the process of finding a new doctor, because she stated that the same thing happened to her. Thank you so much for your story, it makes me feel that I am not alone!

  • Kimberlybthatsme author
    2 months ago

    Hi Dede74, I’m glad you came across my article and so glad you commented…now I know I’m not alone. Maybe there is a special (because aren’t we 😉 MS we fit into. I was in the ER the other night for pain due to a 5 month issue with my shoulder no one knows what the issue is but the nurse in the ER was asking me about my MS (was refreshing that an ER nurse/doc knows about MS instead of running from it). He wanted to know when my last “flare” was and I just laughed and said when was I not in a “Flare”. I really do not know how to answer that question. I have other chronic issues (back, neck, fibro, hashimotto’s blah blah blah) so what fits into what category or is it all MS? My pain doc things the shoulder/arm thing is part of my MS…that NEVER even crossed my mind. Sigh…all I know is I hurt 24/7 and my debilities are literally minute by minute or half hour by half hour…well you get it. Ebb and flow constantly. Hang in there!

  • Kimberlybthatsme author
    4 months ago

    Leslie, I’m so sorry you are going through that. One thing I do know is WE know our bodies and WE have a voice! If you feel you don’t need or react well to the steroids say no! My new MS doc doesn’t like or even believe they help and only allows for 2 a year if that (and that’s only if her patients request it). She thinks they do more harm than good for MS. I tend to agree and if you agree tell them…don’t forget (as the docs often do) they work for us, we are paying them and there is more than one doc out there. I have fired 3 so far and some people may think that’s excessive or crazy but if they don’t listen or I don’t like the care or think we are at least in the same chapter if not on same page I will look for another. I think I finally lucked out on this one. She is close to my home, doesn’t like steroid use and is pretty conservative when it comes to treatments but does listen and we try different stuff for symptoms. After just my first visit, she understood that I am Uber sensitive to meds so anything I suggest or she suggest we start on lowest dose. That tells me she is listening when I talk. Please take care of yourself and no, we all don’t fit in this 4 corner box they have come up with so some ever think you are crazy! Xoxo – reach out any time if you need to.

  • Lielie
    4 months ago

    Wow, Kimberley this sounds exactly like me. I also had 6 weeks this year when I felt completely healthy no symptoms and then bam! I think experiencing these symptoms after feeling great is especially devastating. IV cortisone always gives new awful symptoms. The last treatment in May caused me to have sexual dysfunction. It happens every time I get it, yet the doctors choose not to listen to me as it is their go to treatment. It (cortisone) also gives me severe heart cramps. This is not an easy journey and it does not help when doctors do not want to think out of the box. It is actually a relief to read about someone who experiences MS the same way I do.

  • Erin Rush moderator
    4 months ago

    Hi Kimberlybthatsme! I think as MS research continues to progress and expand, the categories and terminology for various forms of MS may likely shift to more accurately differentiate different types of MS and MS symptoms. That said, your physicians are right — no two MSers are exactly the same. I know other members have described circumstances similar to yours — the ebb and flow of symptoms and overall health and pain levels.

    I do hope you hear from some of them so they can share more directly their thoughts and feelings on this issue. It may be a good idea to track your symptoms, either with a paper diary or even an app like this one https://multiplesclerosis.net/living-with-ms/msaa-launches-update-to-my-ms-manager-mobile-app/, that will let you effectively track your symptoms and see if there are any patterns to your flares and periods of relative symptom-free time.

    I think the more information you can give yourself and your physicians actually helps the entire MS community, as we work towards better diagnosis, treatment, and, hopefully one day, a cure!

    Thank you for sharing and welcome to the “don’t-fit-in-the-four-box club”! I know you’re not the only one!

    Best, Erin, MultipleSclerosis.net Team Member.

  • Kimberlybthatsme author
    2 months ago

    Thanks Erin! I will def check out the link for symptom tracker but I was writing EVERYTHING that happens in a month and print out the 3-4 months of data and bring with me but it just didn’t seem to matter. One doc even said “…ok, we get it you have MS…” ummm ok, so why am I coming here? Did he not want me to track my symptoms to see if they are getting worse or better??? I fired him. Them my PT person told me NOT to write stuff down because then we dwell on it…so with my memory I wouldn’t know how to answer any questions when the doc asks….that went well (sarcasm). I think most docs don’t know what to do with me bc I have other health issues and they are not sure which issues is due to which chronic disease/issue I have. The last 2 nights my legs went out. I could hardly walk but not sure that is an MS thing of because I have chronic back problems. I will mention it to her. Thanks again for the link!

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