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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi Cort,
I used to fail the Romberg but a year after going on the elimination diet and getting the gluten, casein, soy, corn and chemicals out of my diet, my balance and walking normalized. I've been walking perfectly normal for 4 years this month ... :victory: :Retro redface:
Since ataxia and neuro symptoms vary I'll describe what my ataxia was like.
When I tried to walk, my vision would get so out of focus that objects appeared to be floating; my legs felt too heavy to lift, were wobbly and eventually after say 200 feet they'd forget how to walk and I'd have to think about moving the left then the right and so on; I bumped into anyone or anything next to me since I didn't realize that I was falling. It took hitting the object to realize it. I didn't feel a thing ... I didn't realize until this went away that my heavy arms were part of this too.
All of these symptoms cleared up most of the way one day without any warning. I was at Macy's with my son and I noticed that my legs weren't going out on me anymore. Because I'd been using a motorized cart most of the time if I was running errands, it took me awhile to get my strength up though. If I wasn't using a cart I had to lean on the shopping cart or just sit. I stayed home quite a bit due to this. My visual problems didn't totally resolve until I got my hypoglycemia under control but objects no longer appeared to bounce immediately.
Dr. Hadjivassilou discovered that gluten could cause ataxia back in 2002. He calls this gluten ataxia. Google gluten ataxia for more info. FWIW. I think that other toxins can cause ataxia as well. I'll never know for sure if it was gluten causing mine but since I'm a DQ2 and that gene has been linked to gluten ataxia, that diagnosis fits.
I still have orthostatic intolerance so as far as I can tell these conditions aren't related. Losing blood in the upper part of the body and therefore losing functionality of the brain, heart, lungs, kidneys, etc isn't the same as a neurological reaction to a toxin. Blood loss leaves us sluggish and eventually if bad enough causes us to have to lay down ... whereas toxins cause an interruption in neurotransmitters ... Well that's my take on this anyways ...
Great article btw ... X
Ps. Part of the problem I see in how these conditions are diagnosed is that doctors aren't isolating out symptoms that can easily be identified as coming from one neuro problem versus another. IMHO, in a nutshell, that's how the diagnosis of ME/CFS came about ... My healing journey in the last 5 years has all been based on taking on one symptom at a time. I'll get off my soapbox now ...
back off the activity/stress - both are minor warning symptoms of overdoing it in my case - one of my bodies ways of telling me to cut down on whatever it is I'm doing - obviously, being a bloke, for years I wouldnt let little things like not being able to consistently remain upright (or see) slow me up so i know it gets worse from there - after a while (which is why i described it as a minor warning lol)Thanks for this. Bookmarked for when I've got time to go through it all.
I've been having balance trouble since I started getting migraines (I've felt like I've had more energy recently and been able to do more but seem to have also started getting migraines and brief bouts of severe vertigo - very strange as I don't normally have changes in symptoms).
your pacing is probably a little off
Thanks: that's what I assumed too, but I've played about with it and not found a way of improving things. My pacing has been at it's most consistent recently (and I was hopeful this is what had brought about more energy) so I'm not really sure what's going on. Hopefully it will sort itself out.