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Question(s) About Sensory Changes

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  • Question(s) About Sensory Changes

    I'm sorry this got so long. I really intended it to be short, but I don't think I can get an answer from one paragraph.

    I appear to have sensory changes that happen from a certain point down. I've been told by two neurologists (and Dr. Young) that this isn't normal for MS or TM or anything that they know of right off, save for perhaps something causing nerve and/or spinal compression.

    So how can I figure out what the actual symptom is and what's going on so that I can accurately describe it to someone? I wonder if I am misinterpreting something due to confused signals or damaged nerves.

    The things I know for certain to be true:

    I have less sensation below L1 than I used to. The lack of sensation is spotty and I can't tell if either the spots I do or don't feel form a pattern. Should I give my husband a box of stick pins and markers and see what patterns form? (amusing thought, that... except for the being stuck with pins part) Tuning fork tests show a signifcant drop of sensation below L1 too.

    I don't feel items placed under my lower back when laying down if they aren't large enough to actually bend my spine or press deeply into the muscles. There's a large area there with little or no sensation (except for deep tissue) directly in my lower back which starts somewhere around L1 or L2 and covers down to the bottom of my coccyx, about.

    The hot/cold sensations on my feet and lower calves never happened before whatever this is occured. My feet can feel warm to the touch and skin thermometers show no notable difference between foot and forearm, yet my feet will often feel as though I have been walking barefoot in snow, and burn and sting in what I would imagine frostbite feels like. They don't turn blue or anything and circulation seems fine (pulse strong in foot)

    My upper legs often have the opposite feeling as though there is warm air blowing on them, but this is usually a more pleasant feeling than the lower one. It sometimes turns into a burning sensation, as though deep in the centers of my legs someone was running a tube and pouring magma in me. (My doctors just love my inappropriate descriptors.)

    The sensation change is related to the extreme weakness. On the days that it seems as though I have less sensation (which I'm not sure if is actually the case) I have much more trouble walking.

    For instance, two days ago I was in what has become my "normal" state. I cannot walk without a heavy limp, and more often than not need a crutch (forearm) to keep myself upright as I get sharp stabbing pains in the hips which instantly causes that leg to collapse and not bear weight. Sometimes it's just the one stab and a moments lean against the wall, sometimes it's multiple stabs and I can no longer stand or walk unaided, and have spent much time furnature-lurching to a seat. It may be hours before I'm able to walk that far again. I can manage, more or less, without the sticks some portion of the time, and can walk across my house (50 feet straight, 60 for furnature weave) if I'm very careful to move slowish. I may not be able to make it back without sitting down part way for a long moment.

    Yesterday I woke up and was in the "bad" state (which lasts for days, lessening in intensity each day until I'm back to normal). In that state my legs will barely bear weight at all, will not respond easily to attempts to move, buckle with no notice, and when walking (relying heavily on both forearm crutches, unable to support my weight at all in this state) drag on the floor. In that state I cannot raise up on my toes at all, and to do so causes me to buckle and fall. I cannot lift my knee up (from sitting) although I can straighten my knee with little trouble, and ankle motion seems fine, although I can't lift the ball of my foot up while weight bearing on the same foot. While this state used to be accompanied by excrutiating pain, that's not usually true anymore (although it can be and is about 30% of the time).

    Mostly now, instead of the pain, I have that electrical sensation JCCarolina and I were speaking of in the other thread. Sometimes it's focused right on my spine, but more often than not it's radiated a bit and feels like a low-level buzzing across all of the skin of my lower back, and sometimes feels like electric pressing (whch sounds wierd but that's the only way I can describe it) into the muscles that are off to the sides of the spine in the lower back.

    It's this second state where I say it feels as though I'm "cut off" as though the lower half from somewhere in my lumbar spine is sort of dangling, and below that sensation is less present than usual. It's in this state that the freezing/burning sensations are most intense and insanifying.

    I wonder, though, what I'm really feeling. Is there any way I can really tell so that I can better explain it to my neuro (who I see in slightly over a month and who expects a detailed account of my changes since I have seen him last)

  • #2
    You seem to have described what you think you feel well. For anyone else to try and describe your sensations, those would not be your sensations, but another person's take on how you described your sensations.

    It can feel difficult enough to convey what you're feeling without adding the filter of another person on your body with their words.

    Neurologists are adept at translating patient descriptives of sensation or lack there of, function or absence, IMO. They also have reasonably accurate tests for many of these things, well, except pain and science is finding ways to measure what the brain senses as pain.

    If your neuro doesn't understand you, she/he knows the questions to ask to get a better understanding of what you experience. At least that's been my experience.

    You said you'd been to "the" MS doctor at UAB. Was that Dr. Whittaker?

    As for how to describe what happens, keeping a simple journal can be helpful to share with the doctor you see. If you keep it very simple, keep it for the next month, you and/or your doctor may see patterns related to whatever is and isn't happening with you.


    • #3
      Nah, it wasn't Dr. Whittaker, it was Dr. Bashir (How Star Trek eh?) and he said at the time that he was "confident" that it wasn't MS, although he had no idea what it might be, and said that it could be MS presenting in a wierd way.

      Mainly I'm not asking how to describe, I'm trying to figure out how to determine what it is that's goign on. If my sensation is actually changing when those bad days happen, that's one thing. But everyone thinks it's so unusual that I have to wonder if I'm not misinterpreting something else - and so I wonder if it's not something else, if that makes sense. Like weakness can sometimes feel like pain, and so on. How do I know what's normal lack of sensation, and how do I know when it's not just that I'm more aware of the normal sensation loss when I'm so weak?


      • #4
        In another thread you posted the docs found two protruding lumbar discs.
        Have you considered getting advice on ablating those discs?

        This might be way out there..but when the MRI was done the discs may have been at partial protrusion and not inflammed. Perhaps they are doing intermittant type
        of inflammation processes.

        Was any stenosis found also?

        All of your stated symptoms match up with what we see happen in disc generated symptoms in dogs.
        Some will show signs neurological losses and pain one day and be quite normal the next and the following day back to loss of leg and chewing on the foot and thighs. Then back to relative normal movement and actions. Utimately though they will become worse if not treated properly.

        Just a thought. I wish you luck in finding out what the heck is going on.
        Life isn't about getting thru the storm but learning to dance in the rain.


        • #5
          Lindox, I didn't answer you sooner because I couldn't remember, but I had a doc appointment today. Neither of us recall anything mentioning stenosis in any of my tests. He's going to check and let me know for sure.