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Old 09-24-2017, 11:13 AM
Shandor Shandor is offline
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Default Vasculitis & proprioception/2 questions from a newbie

I'm still pretty new at this. My diagnosis just less than a year ago, but I have a couple of questions that maybe someone can answer for me. I meet with the neurologist tomorrow and want to ask the right questions in the short time we have together.

Question 1: I was diagnosed with Vasculitis (little blood vessel explosions all over my body) when I was previously in a flare up, but then it went away as I went into remission. The doc didn't act like there was any connection between it and MS.

I am currently showing a lot of "pre-cursor" signs to a flare up and out of the blue the vasculitis has shown up. The literature talks about a type of vasculitis in the brain that causes legions due to inflammation and blood vessel permeability. Is there a connection? Does anyone know anything about this topic?

Question 2: I notice that if I am in a hallway that is not very visually cluttered, I walk just fine. As soon as the halls fill with people, or if I'm at a store with a lot of visual distraction I become a human pin ball. I know it has to do with proprioception, but why does it seem to intensify in stores and crowded areas? I also know that I can have all the energy in the world, but after 15 minutes in Walmart or Costco it feels like I've been hit by a truck. Why is that? I feel it also has something to do with all the stimuli, but am not sure.

Thanks in advance for your insight.
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Old 09-24-2017, 03:23 PM
Toodles Toodles is offline
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I cannot answer your first question but I concur with your thoughts on your second as to over stimulation with crowds, clutter, stores, etc. I can walk just fine for the most part but when I am in both familiar and unfamiliar surroundings with a lot of "visual" activity I become disoriented and grab my husband's arm or a shopping cart. Shopping in any store leaves me in both mental and physical pain.
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Old 09-24-2017, 03:35 PM
Suebee Suebee is offline
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Shandor,
Question 2 I have personal experience. Proproiception is your brain's ability to know where you are in space. This allows you to touch your nose with eyes closed or have a toe manually pointed in a certain direction by neuro and you be able to state which direction. These are really crude measures of your proprioception, I think. It is more important to me to be able to use my fingers to type on a keyboard or use a finger keyboard mouse (which I can't).

Ok so my proprioception is off but it vary daily as do all my other MS symptoms. I notice it when I slam a glass of water into my teeth when I wanted a sip, slam a full coffee cup down on my desk unintentionally and it goes everywhere, or throw a ball for my dog completely in the wrong direction. My family and I can laugh these instances off. More annoying is walking into a door frame in a professional setting, which is awkward and raises eyebrows, and I can't seem to use a consistent text font size on white boards. I get many co-workers tell me to cut it out.... But really most troublesome is shopping as you described. I don't think neuros "get" how disruptive to life this symptom is. Propioception is tied up with one's vestibular system some how, and as one moves through the isles of grocery store with lots of visual stimuli, a person with a deficit of proprioception is relying more on visual cues, but visual cues are constantly changing, as is the body through space, and real simply the brain just can't process it alls. It's too much.

Great news, yay, there'a an actual treatment for this vestibular issue! I had this problem for 10 years and no medical person ever suggested anything other than meds, but my last PT seemed to understand all my issues in thgis regard and gave me vestibular retraining. I was so overwhemlmed to have something to do about it, I cried in front of PT. (Why had my great health care providers let me suffer with this symptom for so long???)
This vesitbular training has documented success. Essentially, it retrains your brain by desensitizing it to all this visual and physical stimulation. It helped me some. And I understand the exercises which would help me if I want to do more. The high tech training I got involved a large life size video screen on a moving table, which moved as I had a view of traveling down a shopping isle. Like a video game, I had to find items on the isles without falling over. It gets harder as you get better. The low tech exercises are looking a fixed point or points and shifting view and or head at certain increments for a set amount of time. The exercises are hard and uncomfortable if you get dizzy or disoriented. So one has to start out slow and work up to longer and more complex head-movment and eye fixation.

I found wearing a baseball cap helps me in grocery stores by blocking out a lot of peripheral view. Sometimes, if I am feeling quite disorientated, as a last resort I cup my hands on both sides of my eyes as I walk down the aisle and or pushing a shopping cart for stability.

I'm sorry you are experiencing this, but the good news is that unlike so many other MS symptoms, one can actually do specific "exercises" to overcome these vestibular issues. I don't know why neuros and PTs don't treat vestibular issues more often. I don't know if this treatment is a recent development. Regardless, talk to your neuro about this and seek out a high tech rehab facility with the vestibular training unit. Best of luck, Suebee
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Old 09-24-2017, 07:41 PM
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ActiveMSers ActiveMSers is online now
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Shandor, here's another comment, this one from Facebook...

Quote:
AnnMarie: I don't have any solutions or words of advice but wanted to let her know she's not alone. I too have visual clutter issues. Visual clutter affects my cognitive abilities (& perhaps proprioception as well, I never noticed). The walls at home are empty and painted white. I've never talked to my neurologist about it, I just make adjustments and compensate for it in my life.
I've noticed crazy busy, loud restaurants can also put the ol MS into hyper drive. Fortunately, a single malt Scotch helps me out in such situation. Don't necessarily follow my lead!
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Old 09-24-2017, 11:28 PM
Shandor Shandor is offline
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Thank you so much for your comments. Its reassuring to hear about the experiences of others and I will all my doc about the training. I wonder if ot's also do vestibular training.

You guys are awesome!
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