I'm curious as to what first symptoms people with ataxia noticed. Especially those who have periodic episodes.
I've kept a relatively detailed symptom diary but i can see no pattern yet. Urinating far more frequent than normal seems a recurrent symptom that precedes the others. But i'm just not sure...
I was very much the same. It was going down stairs which first made me notice something was not right and then I started noticing I was spilling drinks when I carried them and found carrying a tray of drinks impossible after a while.
My mother had the illness my whole life until I turned 18 then she sadly passed. I started seeing signs when I was 16. In my walking talking and everyday activities, my twin sisters died when I was 23 they both has it bad since they were really young, they passed away at 25 years of age, my eldest sister is 32 shes has it as bad me, we both care for each other. The first symptom I noticed was In my walking, I wasn’t as steady as before.
I banged my head on a window unexpectedly at a business meeting and lost my balance at a coffee break
I noticed increased urination very early on, but this has settled now. then I felt as though I was tipping forward at the sink and my legs felt funny. My walking slowed down and then got very tight. Have any of you heard of Low Dose Naltrexone? This really helped me a lot and I wonder could it help some of you? It really improved my walking
Thanks Louise il look into that
I work for a substance misuse service and we used Naltrexone for opiate dependence, it's interesting how it could help this condition too.
Thinking back, I remember my very first sign was my left foot occasionally bumping in to curbs when walking outside. Months later i had an episode of being uncoordinated: I was driving with my wife and we stopped for a coffee break. While standing at a bar where the coffee is being served I said to her "I think my coordination is a bit off today" at exactly the same moment i tried to put my elbow on the bar to acquire a steady position. My elbow missed the bar and i nearly fell.
My wife couldn't stop laughing, thought i was fooling around! It was quite funny actually and i did not take to much note. A few weeks later i had a day of intensive individual talks with students, at the end of the day i noticed myself speaking with double tong. I thought it was tiredness from talking whole day.
Then, when i stepped out of the classroom to go home, I noticed a difficulty in pinpointing my own position in the classroom. And when i stepped through the door i hesitated to step over the doorstep/treshold and ducked a bit in fear of hitting my head against the upper door post (obviously quit pointless as it was solidly situated about 1 meter above my head...)
Then the walking, balance issues and clumsiness came, first mildly then more present. Since then all of the above have come and gone in various episodes and severity, ranging from hardly noticeable to fairly embarrassing!
Still waiting to be diagnosed though....
Yes Naltrexone is used for addictions however, this is in high doses of 50 mg. When you take low doses of naltrexone, usually 4.5 mg it has an effect on boosting the immune system by increasing endorphins 300%. You can look at it here http://www.lowdosenaltrexone.org/ A really great doctor suggested I try it because he said that in his experience when a condition defies a diagnosis it is nearly always auto immune in nature and LDN can help this. I remember after 6 weeks I was suddenly much more able to walk. Id also strongly recommend Dr. david Perlmutters Brainrecovery.com book and his website and other books. He is a neurologist and recommends a range of supplements that support the brain. Another great book is Power Up your Brain by Perlmutter. It really shows that the brain can recover function if given the right nutrients.
I am 59 now. 10-15 years back i started slowly losing my equilibrium, which continued to deteriorate and for last few years i am on wheel-chair and my speech has got slurred.
Has any one heard of the stemcellschina apparently its really good, after seeing a video it makes me want it, does anyone know anyone that has had it?
Teaching PE and I couldnt balance on one leg.I expected the kids to do it and I could not demonstrate it.
Happened about 5 years ago.Got worse.Stairs and especially steps are impossible for me now without a lot of help too,.
To begin I was unable to walk, could not lift my feet, but did not pay attention thinking I was tired. Then I needed support to stand. Still could not figure out the cause. Then I felt weakness in my knee, which used to buckle. I had a fall when going to a vegetable mart and a lady helped me to get up. Now I just cannot get up at all if I fall to,the ground. Lost power in my toes. I did fall a month back and very awkwardly managed to walk with my knees to get inside the apartment! The initial symptoms started in 2010 and diagnosis confirmed in March 2012 that it was Cerebellar Ataxia! Now Ataxia is my friend and I hope he treats me with some compassion!
I have an unspecified form of Sporadic Ataxia, but my first symptom was that I seee\med to be limping when I was walking normally.
Well, it looks like it's a bit of a cluster disease... every one seems to have different initial symptoms. But it's really scary to read that the longer you're stuck with it the clearer it gets that the other symptoms will kick in eventually....
I was taking Karate for four years - the owner and Sensei there talked to me telling me that over 4 years she's seen people improve and stay the same - she's never seen someone get worse, until me! That got me started on the road to figure out what was wrong with me. I probably had symptoms before then, but I was in denial about it - "there's nothing wrong with me, I'm just a bi klutzy!".
Fatigue was my first symptom. I had slowly over years stopped having a social life because I was too tired. I would come home from my part-time job and just lay down the rest of the day.
The next thing was dropping stuff all the time. I broke every coffee cup we had in our house. Things just fell out of my hand. Then it was "wall walking". I had to use the wall to keep balanced.
Hans, I've told you how it started for me, now I'd like to make some suggestions for turning this around and giving you a sense of control and HOPE in this.
You've already identified gluten as being a problem. I would encourage you to do lots of research on healthy diets and disease. I think you find there are lots of dietary changes you could make.
I would also suggest being proactive about strength and endurance training to combat what your dealing with. The more I work on balance, strength and endurance the better I can cope with the episodes. It seems counter-intuitive but it works. You could ask your doctor for physical therapy. I do strength training 3 days a week and walk 5 days a week (when I can). It's hard, but I know how much it helps, so I push myself. Do what you can now and add a little bit more each week.
I'm sorry if you've already mentioned that you are doing these things...my memory is bad. :-)
I first noticed I was having trouble swallowing, especially liquids. I was also very tired no matter how much sleep I got (was over-seas on vacation, sharing a room with my sister. She was concerned as I snored, but also stopped breathing...found out when I was diagnosed with ataxia I also had sleep apnea, hence my tiredness). I've since read and been told that many people with ataxia also have sleep apnea. I also noticed that my knees would shake going down the stairs. I started feeling "unsteady". I had a Christmas Village that I'd set up each year and remember the year I was diagnosed that setting it up really tired me out (going up and down the stairs with the ceramic houses and getting up from the floor etc.). It took me a year to tell my physician my symptoms as I was in denial that anything could be "wrong" with me. After all, I had always taken good care of myself and was very healthy.
Unable to dance, jump, hike and ice skate. Inability to climb stairs. No stamina. Then loss of balance and spatial perception. Didn't realize i was sick at the time. Many misdiagnoses. PT made me worse.