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Alice in Wonderland

I am another of those in the midst of diagnosis attempts--Lumbar Puncture coming up Friday. But want to know if some current symptoms strike a chord with others. This started with a bang in early April--before that it was a bit of numbness in the left leg and left side of my face starting slowly for weeks (but double vision and chest tightening symptoms and a few others for a few years). Some things just stay the same, like the pervasive numbness in both legs and bottoms of my feet, my head, jaw and now my left arm (and when the numbness sets in, it doesn't leave--what this takes, it doesn't give back)--the thing that goes on with my ears. But that is what it is--I can accept and embrace it--it's still not to the point that I can't feel if someone touches those places. What is overwhelming is when--and I have been in the midst of this the past few days is an all-encompassing mass of it together--creating a feeling like I'm walking through an Alice in Wonderland experience--my hearing goes weird, almost like I'm in an echo chamber with times when it feels like your in an airplane before your ears pop--and as if some giant hand has grabbed your head and all that it touches is numb and my jaw feels heavy--it all feels like a heavy iron mask and my legs, in addition to the numbness feel like cold wind is blowing on them when I walk--and just how can things be numb if you have all these sensations? I feel I don't even know what the word numb means now. And my toes get incredibly cold--my circulation isn't great, so I've always had cold hands and feet--but this is different--it's glacial. And my body is kind of buzzing. It's so funny, because I can still walk in a straight line, I can still feel when someone touches me, my eyes can follow any little thing right and left--but I feel like I'm walking through a different dimension and there's no way to explain it. This time round, it feels like the "numbness that isn't a numbness" has progressed to my entire left side, making me feel slightly unbalanced. The double vision sometimes goes to triple or quadruple vision--thank God for the prism glasses or I would not be able to drive. I have always been known for my energy--I'm 70 next month. Never one to fall asleep at the TV or reading--able to do back to back meetings, often with more stamina than my students, and now occasionally when I'm in Alice and Wonderland mode at its height, a sleepiness comes on me and nothing can keep me from my bed--unless I really have to do something and I have to push forward anyway. The only "pain" I have is some weird headache on the left front side of my head that often sets in before I wake up in the morning--and I know it won't be the best of days. And the sometimes aching, sometimes shooting pain from the back of my head down the back neck. And the lower back pains which I don't know are related to this or not. Anyway, wondering how much this Alice in Wonderland feeling is experienced by others. Thank you for your comments!

  1. Hi . It sounds like you are experiencing a whole lot of neurological symptoms all at once. Each symptoms you describe is common to MS, though those systems are experienced by people with other neurological disorders as well. Nerves can create some very strange sensations when they are damaged or irritated. For instance, the nerves in my foot were damaged during surgery a few years ago. Sometimes, my toes will feel like ice. Other times, it feels like they are on fire. My doctor told me to actually feel my foot. It is is not cold or hot to the touch, then I can blame it on that wonky nerve. Here is an article about some of the weird symptoms of MS: https://multiplesclerosis.net/living-with-ms/some-of-the-weirder-ms-symptoms. I will bet that if you read through the article and the comments, you will find that it's all very familiar. I hope this helps and that your lumbar puncture went well. We are here for you whatever the results. Gentle hugs. - Lori (Team Member)

    1. Thank you so much for giving such kind and patient attention to so many of us. I would be really grateful if you could tell me what those other neurological disorders are that have the collection of symptoms I've mentioned.

      1. Hi . Here is an article that discusses health conditions that should be ruled out before making an MS diagnosis: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. I am guessing many of those have already been ruled out if your doctor has requested a lumbar puncture. I hope you will keep us posted about your results, if you are comfortable doing so. I will be thinking of you. - Lori (Team Member)

    2. Thanks, I will. You are so sweet. Results should be soon.

      1. Wow, what a great article! I'll be looking through it!

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