Hi I am wondering if other people have these symptoms too?
I am definitely unbalanced and walk into things sometimes. However, my biggest problem is getting my legs to move smoothly, I find it hard to extend my stride. Its like I have elastic bands on them holding me back. Is this a symptom of having ATAXIA?
Also when a doctor took me off gluten I definitely improved but recently I did a food intolerance test and all that showed up was a yeast and wine intolerance (I knew about that because white wine would nearly make me fall over and sieze up my legs). Could I still have gluten ataxia even though it doesnt show up?
If nobody has said you had ataxia but you have a yeast allergy, I would look into the Candida diet. An allergy to this can also cause similar symptoms but if it was that they would clear up as soon as you have been on the diet a while.
Hi Louise, what you described as, "like I have elastic bands on them holding me back" is EXACTLY how ataxia feels for me! not just my legs but for my arms too. The harder I try to move forward with my legs or reach toward an object with my arms the worse it can get. In the rehabilitation hospital they taught me to push off with my feet and not think so much about forward movement or where I was trying to go. Thinking about "pushing off" seems to help. It seems to be about finding the right amount of force. I can only get a "normal" gait some of the time and it takes just the right amount of hard focus or soft focus. I also have problems walking into things and coordinating my vision and knowing where I am in space. I found through accident while vacuuming and pushing a shopping cart that just the slightest aid to coordinate my vestibular/vision/spacial systems can really help my gait. Since I didn't want to use a roller walker and a walking cane made me worse, I decided on using a mobility dog. Just that little bit of support can really smooth my gait out. He also guides me so that I don't run into object, like doorways, people, etc. Using little aids seems to extend my endurance. I still have spasticity but I can stave off the " very heavy headed heavy limbed" sensation longer this way.
My ataxia was from a medication reaction probably combined with coexisting underlying cause. The underlying cause has about six different speculations from six different Neurologists. I didn't want to pursue genetic testing so I stopped searching for a diagnosis and instead put my energy into healing.
I myself have chosen to do a Gluten Free diet. It does seem to help me but not cure me. I don't think there are any conclusive tests except an endoscopy for celiac and I have read that an endoscopy may not reveal the spectrum of Gluten Intolerance. I think finding something, anything that helps you is GREAT NEWS!!! ;)
Your test might be not sensitive enough. Often an experimental treatment - e.g. glutenfree diet or supplementation with a vitamine could help even with no positive test. For the food tolerance there are existing different tests , the more expensive which you have to pay privately is said to be the better one (i don`t know).
Hi Louise, I just went for therapy for my Ataxia. I swing my arms to much. To me it sounds like you could be starting or whatever with Parkinson. They all were taking small steps. Even thou I was told Ataxia and Parkinson's almost the same thing. Just thought I would let you know what I saw!
Thanks, very interesting about the pushing off of the feet, Ive tried that myself and it does help.
Lori, I've often thought it could be PD but the strange thing is I have actually no tremor, and I can jog down the road or run up and down the stairs. I can also walk in a field or along the beach pretty much OK and for a long way. My problem is flat ground like a pavement. The other thing is in the morning I am practically perfect walking barefoot around the house. But when I put on shoes its more difficult. I dunno if this sounds like PD. My neuro never even considered this, but he did consider all kinds of other horrible things.
Thanks, very interesting about the pushing off of the feet, Ive tried that myself and it does help.
Lori, I've often thought it could be PD but the strange thing is I have actually no tremor, and I can jog down the road or run up and down the stairs. I can also walk in a field or along the beach pretty much OK and for a long way. My problem is flat ground like a pavement. The other thing is in the morning I am practically perfect walking barefoot around the house. But when I put on shoes its more difficult. I dunno if this sounds like PD. My neuro never even considered this, but he did consider all kinds of other horrible things.
PS. I also wondered about Transverse Myelitis because at one point I had a mad gripping sensation around my middle, the walking problem came after that.
Louise Courtney said:
Louise Courtney said:
Thanks, very interesting about the pushing off of the feet, Ive tried that myself and it does help.
Lori, I've often thought it could be PD but the strange thing is I have actually no tremor, and I can jog down the road or run up and down the stairs. I can also walk in a field or along the beach pretty much OK and for a long way. My problem is flat ground like a pavement. The other thing is in the morning I am practically perfect walking barefoot around the house. But when I put on shoes its more difficult. I dunno if this sounds like PD. My neuro never even considered this, but he did consider all kinds of other horrible things.
Hi Louise, I can run a little but I can't sustain it. Too much co-contraction. My legs begin to jerk backward. I also circumduct when I walk and my legs scisser and collaspe inward when I try to do things like jumping jacks or fatigue myself too much. Spasticity! I am the very worst barefoot in the morning. I have a lot of difficulty with stairs. What I do find is that sometimes if I flex my muscles really hard I can walk better. It is as if all that flexing stops the "bad" incorrect messages from being sent. I can do a lot for someone with ataxia but it just takes so much focus and a TON of extra muscle and brain energy to do it. Real world situation is that I can't keep up when walking with my friends. Yours sounds almost sensory. I have the "MS hug" sensation of the being squeezed around the middle. Not sure if any of this information helps you but I hope so. :)
Hi Louise, I heard that not having any Gluten for a while and then being tested it wouldn't show up. In my case I've been off Gluten since 2006 and if I wanted to get tested again for it I'd have to enjest it for a few months and that's not any guarantee that it would show up. I had a blood test back in 2006 and the reading was that I didn't have intolerance to it but went off anyway.
I feel it's only one peice of the ataxia puzzle.
I'm working with Dr. Tom Clouse on my movements right now and he keeps stressing making sure I have distributed weight on all of my feet, along with moving my shoulders just 1" forward, bending knees just a bit, looking at least 2 ft ahead of where your walking (while challenging yourself every few days to look further) Practice, practice practice. Check out his site too for more thoughts and information. http://www.walkingwithataxia.com/INHERENT%20PROBLEMS%20AND%20ISSUES.htm
My father had Parkinsons and I have Cerebellar Ataxia at the same age.I do remember growing up with Disability.
Dad could walk and run when the medication worked but he had difficulty initiating a move.I remember him throwing down walking sticks and walking over them to get moving but that was the early 80s and I think things have changed a lot since then.
I can balance on my legs just with a lot of quivering but I cannot move forward or speak properly.
I think there is a lot of crossover but the movement disorders have different causes.His I think was a Neurotransmitter defect wheras mine is Cerebellar Degeneration.my sister who is witness to both says our movements are different.My Ataxia is different from some as I have no fatigue problems or upper limb co-ordination problems but I do have Ataxia because I can associate with so many on this site; especially spillling things like liquids which go everywhere.
I have an intention tremor but no tremor at rest.Dad was quiet but didn't have speech difficulties.I think he had Parkinsons and maybe Ataxia.Who knows;it was a long time ago but the effects still remain.
One thing i can say is that you can't do a blood test for gluten intolerance if you are on a GF diet. Well you can but the result will most likely be negative. If you really want to know, do the test again after at least 2 months of eating gluten. And while at it you might want to test for vitamin D3 and B12
One thing i can say is that you can't do a blood test for gluten intolerance if you are on a GF diet. Well you can but the result will most likely be negative. If you really want to know, do the test again after at least 2 months of eating gluten. And while at it you might want to test for vitamin D3 and B12