Hello. I'm new here and have been looking round at comments. I would imagine that many of us have ataxia due to some sort of brain damage so along with the ataxia, we have other issues. For instance, I am deaf but I'm told that is nothing to do with ataxia or my cerebellar damage; it is due to further brain damage of the auditory nerves. So puzzling out which of my symptoms are due to ataxia and which are due to something else is not very easy. So I'm just wondering if anyone out there can help me out a bit.
1) I sometimes get tingling in various fingers and sometimes my fingers go strangely stiff and sometimes my hand goes into a bent position. Is this due to ataxia?
2) I have been diagnosed as having a prolapsed disc and this causes siatica-like pain. Is this due to ataxia?
3) I sometimes get cold feet possibly from poor blood circulation. Is this due to ataxia?
4) I have a loss of feeling in various parts of my body. Is this due to ataxia?
5) I have a squint. Is this due to ataxia?
6) Like Mommaroo has mentioned elsewhere, grassy surfaces are a problem. I find that my legs go like jelly on grassy or uneven surfaces. I'm pretty sure this is certainly due to ataxia - but can anybody explain why? Is it because there are that many conflicting messages going to my brain that my brain cannot cope?
I dont pretend to be a dr,, but would check some of these symptoms out. Maybe a really good dr. can find out what's wrong. Maybe your ataxia is treatable. You dont say how old you are. All I know personally are about the classic signs of CA; dizziness, gait and speech disturbances, awful handwriting and fatigue and some leg pain from extensive walking. Either way, good luck to you.
I just don't know but I have a theory: Many things you mentioned are not in my experience background however regarding walking on grass: That is an issue as well as gravel, deep carpet and any floor with a pattern, as well as patterns that are fine with sunlight but very poor with fluorescent light as well as incandescent.
This is my personal opinion: Balance being the common issue or actually a balance issue and an incorrection over or under compensation that leads to another compensation which happens so fast the muscles cannot respond, and when they finally respond, it is a severe over correction. and .......everyone thinks your drunk. I think the brain and many contributing senses all have input. eyesight being the gyroscope, the inner ear senses immediate change, and proprioception (where your body is in space). Where your body is in space, as far as the mind see's .
Walking on grass says to me that eyesight is a leading indicator of whats in front of you. To me it is hard because I see a solid surface at the top of the grass. Unfortunately it is overwhelming to the brain when we sink into the grass. While we may not publicly display this concern. It is real and we cover up.
Hoping my thoughts are helpful I have much more to say.
I( have found eyes are bothering me as I have to squint when in bright lite. When driving I have to wear a good set of sun glasses for indoors I bought a pair of coated glasses with FL-41. I think a pair of rose colored sun glasses could work indoors. With glasses on it stops the squinting and is very relaxing for the eyes. I believe the eye problem may be Blepharospasm. An eye doctor told me to see my neurologist and my neurologist cant think of any problems that could affect my eyes. I go to Parkinson meeting and have met others with eyes bothering them.so I would research it before going to a doctor, some say its just dry eyes but drops don't help. I have cold problems but I had radiation that messed with my thyroid. I am still trying to get diagnosed, I think hypothyroid and one test showed I did so he had me take another blood test and it came back lower so no help there. I have had hand problems I found when taking lovastatin. When I would wake in the morning I could not close my hands for a while so I dropped lovastatin. Jerry
I’m most comfortable with tinted lenses. I have nystagmus, yet my vision has improve d…go figure!
I do get tingling in my right hand…at times…( morning only) my fingers will start to numb. I don’t think it’s directly related to ataxia, but rather from banging into things, causing bruising in my shoulder muscle.
While at lunch today, a gentleman stopped me because he noticed my gait. He told me to make a tea of water, honey and cinnamon and drink it three times a day. Don’t laugh, because it can’t hurt…and you never know! I might see some sort of improvement! I’ll report back after I’ve had it for a couple of weeks…,
Laughter is wonderful medicine…Please find something to laugh about every day…
Not all ataxias are from brain damage. Mine is hereditary.
Most ataxias have balance and walking issues, vision, writing and speech. What you have listed doesn't sound like ataxia. You may want to talk to your doctor about these issues.
The tingling in your fingers, the prolapsed disc, and squinting might make your ataxia worse but you don't have ataxia because of these issues.
What kind of ataxia does your doctor say you have?
Read my mind Neta..Hope you find a really good examiner...good wishes to you :) neta said:
I dont pretend to be a dr,, but would check some of these symptoms out. Maybe a really good dr. can find out what's wrong. Maybe your ataxia is treatable. You dont say how old you are. All I know personally are about the classic signs of CA; dizziness, gait and speech disturbances, awful handwriting and fatigue and some leg pain from extensive walking. Either way, good luck to you.
My story is that I had brain cancer as a child 40 years ago. It was in my cerebellum. The cancer was removed but over the last 40 years, the cerebellum has gradually disappeared. I now have a hole where the cerebellum should be as big as a ping pong ball. However they told me 40 years ago, that the surrounding tissue would adapt and do some of the things the cerebellum should have done. I was a child at the time so I won't have understood properly. But if I understand right, I'm not as bad as I could be. I have some of the classic symptoms of poor balance, looking as though I was drunk, an ataxian voice and poor vision but am not as bad as I could be.
is that why i can barely read my handwriting, thought this was true just for parkinsons but I have to be very careful taking notes as i can barely read my handwriting anymore
neta said:
I dont pretend to be a dr,, but would check some of these symptoms out. Maybe a really good dr. can find out what's wrong. Maybe your ataxia is treatable. You dont say how old you are. All I know personally are about the classic signs of CA; dizziness, gait and speech disturbances, awful handwriting and fatigue and some leg pain from extensive walking. Either way, good luck to you.
Your story is somewhat similar to mine. I had a tumour (benign) in my cerebellum and it was removed in 1995 (29 yo then). So I have a hole in my cerebellum too. However, I was told/let to understand that "the hole" does NOT get larger (and thus my ataxia won't proceed). After having read your story, I'm not so sure anymore. When was your first MRI? I guess there were none in the 70's. I'll try to get hold of my first MRI after the operation and ask some radiologist/neurologist to compare them to my later ones.
But anyway, to answer your question, I have two "completely worn-out" discs, cold feet and hands as well as double vision (etc.). I'm quite sure that they are all somehow related to or a result of my ataxia. I'm sure that ataxia causes the last one.
As far as I know, you need not worry. The man who did my surgery is retired now and the man I now see has told me that they wouldn't do it now like they did it then. In those days, there was no chemotherapy and no MRI's. The surgeon just cut me open and picked out the dirty thing. Then I had radiotherapy to remove the bits he couldn't get to. If they told you that the hole would not get bigger, then I think you have every reason to believe them. I can't remember when my first MRI was but I would estimate 1990. Before that it was a CT scan but when I had my cancer, I don't remember any scan at all. I'm really pleased to have met someone who's story is like mine.
Anna Heikkinen said:
Your story is somewhat similar to mine. I had a tumour (benign) in my cerebellum and it was removed in 1995 (29 yo then). So I have a hole in my cerebellum too. However, I was told/let to understand that "the hole" does NOT get larger (and thus my ataxia won't proceed). After having read your story, I'm not so sure anymore. When was your first MRI? I guess there were none in the 70's. I'll try to get hold of my first MRI after the operation and ask some radiologist/neurologist to compare them to my later ones.
But anyway, to answer your question, I have two "completely worn-out" discs, cold feet and hands as well as double vision (etc.). I'm quite sure that they are all somehow related to or a result of my ataxia. I'm sure that ataxia causes the last one.
It is indeed a privilege in some ways. But it's even more a privilege that after 40 years of not knowing anyone else who has it, I have within a week met dozens of people.
