I'm hoping those who have been dealing with this longer can share their experiences?
my physical symptoms are worse at times, less worse others. have also found certain activities, and positioning of my body can bring out muscle spasms, movement disorder, and tremor.
my night vision is all but gone, and depth perception, with blurred vision off and on. legs getting weaker, sometimes knees buckle and trip over my own two feet. felt it was from my joint issues, but now not so sure. speech slurred off and on too. we joke I have created my own language as words either won't come out, or are jumbled one from the other.
still on waiting list for the specialist, so have to help self.
have I misunderstood what I have been reading, or can this change up in symptoms be expected?
hoping this makes sense. headache is back, elephant standing on my eye again. (not migraine)
thanks for any input.
(p.s. issues not known to be in family, instead from may be past injury and neck surgery)
I am 72 years old so I must have a lot more experience living with ataxia than you. I would like to give a brief history about living with my ataxia. I went to doctors and neurologist for over 16 years with no diagnoses. In the mean time my condition was getting worse. I knew I had to get proactive out of necessity. I started to do research and traced back when my dad was born in Japan in 1888 he had ataxia. I found out there was a epidemic up to 30% of the population died and later in 1926 found to be thiamine deficiency. I found out if you grow up with no thiamine in your diet it mutates your thiamine transporter gene. My body wasn't taking the thiamine in the whole blood and transporting it to inside of my red blood cell. The red blood cell carry oxygen and nutrients to all the cells especially the brain. I finally went to a MD doctor who specializes in nutrition. She found my problem on the first visit she knew what blood test to run. I found out all blood test are not the same. The test she sent my blood to was Spectracell Laboratories micronutrient test. It tests over 33 vitamins minerals antioxidants amino acids. It test the white blood cells the last product your body makes with the nutrients your body sees. The regular serum blood level only test what is in the whole blood the beginning point of nutrient cycle. Here is some info on Spectracell Laboratories. http://www.apassionforhealthyliving.com/spectracell-micronutrient-t... If you are interested in taking this test let me know I can give you all the info.
I too am 72 years old but my symptoms are quite mild [comparatively speaking] ... I dont know how much can be attributed to my interest in supplements since I was 40 years old.
Steve, I was very interested in your advice about this and have emailed my ataxia specialist neurologist. No response yet unfortunately but... he is 'over subscribed' me thinks.
Cant do any harm to follow vitamin and mineral supplement regime.
I have had Cerebellar Ataxia for some 6 years or so.Itt came out of the blue.No hereditary history. I am now 54.Mobiility went first then speech but tremors and poor focus have only been thiis year.
I am glad my children have left home as I could not cope.
From what I know of movement disorders is that there are many causes.Vitamin Defiency is one route to go down;along with those might be the Celiac and the Gluten Ataxias.Mine is caused by a disease so there is loss of motor skills but no cognitivee impairment..I get peerplexed too.I don't think the Neuros know a great deal but they could be good at a particular ataxia and they can arr ange tests to eliminate certain things to put your mind at rest.I am for ever wondering what caused it also if there is something I can do. I expect there are a lot of us like that.The happiest people seem to be those who accepted but I am struggling with Acceptance.Put your mental health first.
I believe your ataxia is mild because you have been taking supplements. Can you tell me all the supplements you are taking? I found out as we age we become deficient in certain vitamins minerals when we are deficient free we feel a lot
better.
Patsy said:
I too am 72 years old but my symptoms are quite mild [comparatively speaking] ... I dont know how much can be attributed to my interest in supplements since I was 40 years old.
Steve, I was very interested in your advice about this and have emailed my ataxia specialist neurologist. No response yet unfortunately but... he is 'over subscribed' me thinks.
Cant do any harm to follow vitamin and mineral supplement regime.
If you get a Spectracell test and the result come back that you have no deficiencies you can rule out vitamins minerals
deficiency problem. With all your symptoms it would be wise to get tested. You can read what this test is all about in my 2nd post. All blood test are not the same. Marie Turner said:
Hi Perplexed
I have had Cerebellar Ataxia for some 6 years or so.Itt came out of the blue.No hereditary history. I am now 54.Mobiility went first then speech but tremors and poor focus have only been thiis year.
I am glad my children have left home as I could not cope.
From what I know of movement disorders is that there are many causes.Vitamin Defiency is one route to go down;along with those might be the Celiac and the Gluten Ataxias.Mine is caused by a disease so there is loss of motor skills but no cognitivee impairment..I get peerplexed too.I don't think the Neuros know a great deal but they could be good at a particular ataxia and they can arr ange tests to eliminate certain things to put your mind at rest.I am for ever wondering what caused it also if there is something I can do. I expect there are a lot of us like that.The happiest people seem to be those who accepted but I am struggling with Acceptance.Put your mental health first.
Thanks Steve.Looked up the test.Going to email orr write to my specialist centre.Know I have had many tests including the whole genome but don't knnow which I have had.
Ataxia symptoms are progressive and in the wrong direction, unfortunately. The only suggestion I have for muscle spasms, which occur at night with me, is to soak a wash cloth with hot water, wring out, and apply to the area for a few minutes. Seems to relax the muscle. I spend about 10 mins doing this, usually to the legs, ankles and sometimes to the abs. and it seems to work with me.
I have some slurred speech, but don't know how to avoid it. If I knew ahead of time what words are likely to be slurred, I'd think of something else to say!
My knees unexpectedly buckle at times too. Just be sure you are hanging onto something or using that cane!