I have CA.I was told by one Neurologist it was stress.That was five years ago.It was only when I had an MRI which showed cerebellar degeneration that i was taken seriously.
A movement specialist took one look at the way I walked and said Ataxia.Since then my speech and walking have deteriorated as expected but although I know what to do with walking I find it very difficult to walk normally.I lurch,shuffle and furniture walk because my balance has gone and I am afraid to take even one foot off the floor.I stiffen up ,feel very unsteady and fall if I move too quickly.
I am hoping my brain can regenerate even if the cerebellum is not behaving as it should.My GP is very good and gives me all the support I need.That makes me feel intelligent and listened to so it has helped my mental health.
Maybe the Dr meant it was brain in your head rather than psychological which is a more emotive word to use.
Don't buy into what the doctors say. I believe it is their lack of knowledge to figure out what is wrong so that is their fall back diagnosis. I have gluten ataxia and when gluten was getting into my body, the right side of my body would become paralyzed. I had 3 neurologists tell me it was all in my head. One neurologist tell me he didn't know. A gastro. doctor specialistizing in Celiac Disease tell me he didn't know how to read my genetic test from another doctor. I also had my own personal doctor for 13 years tell me I was doing the ataxia on purpose to get attention. Needless to say I now have a wonderful set to doctors. You might want to check out gluten ataxia on the web. If you are interested in having genetic testing for gluten genes, I highly recommend enterolab.com. Don't give up. Ahbee
Wow! Thank you one and all for your kind, supportive wisdom. I wish I were able to write to you all individually but I'm back to work today (after three months of disability.) And I'm rationing every movement : ) For now, let me just say - thank you. What a comfort is it to know there is a community of people who understand. I'm stronger because of it.
Well said Marie, way to think "out of the box"! I like what you said about the comment the doctor made, that maybe it was the brain in her head rather than psychological! Yes, I also believe the brain can regenerate and can make new neural pathways, to compensate for the atrophied ones. When I was going to a physical therapist, she had me doing moves over and over again. She said after a while the brain remembers what you've done. I practice standing on one foot (by the counter, in case I start to fall I have something to grab onto) for balance every day, and I've increased how many seconds I can do it. Therefore, I believe my brain remembers. Also, that's refreshing that your GP is so supportive! A good doctor can make so much difference...,Hugs ;o)
My opinion is.... Duh.. it is I your head. Just like most doctors. They do not have the answers. Ataxia is different from anything. Your doctor had no right to say that. Your going to get more answers here then at the doctor's. It sounds like you are doing all you can. Good luck
They did an MRI of my head and told me they didn't find anything. I told the Dr. that sounded like a problem and asked how long I could live with nothing in my head.
My opinion is.... Duh.. it is I your head. Just like most doctors. They do not have the answers. Ataxia is different from anything. Your doctor had no right to say that. Your going to get more answers here then at the doctor's. It sounds like you are doing all you can. Good luck
Looking forward to hearing how things go for you at Mayo. When are you scheduled to go?
Gearhead201 said:
Those were very hard words for me to take, and still I have not accepted them as truths. The worst for me was hearing it from a neurologist. His words, "I genuinely believe you have a problem and I think you need to seek psychological help for it.", only compelled me to find a better understanding in what is going on with me. Since this doctor I have went to my family doctor and he did a few in office tests that resulting in his referal to a different neurologist. This neurologist after a few tests could not come up with a positive diagnoses for ataxia due to some differences in my abilities to past types of ataxia he was able to identify, he refered me to Mayo Clinic in Rochester. I will be making my trip to them for 5-7 fun filled days of testing at the end of this month.
Doctors are interesting creatures. Unless there's a drug cure for a condition, it basically doesn't exist in their world.
Lisa, what kind of food allergy testing have you had done? The most common kind of allergy testing where I live is skin prick testing. This will only pick up allergic reactions that happen fairly immediately and are IgE mediated. Unfortunately most doctors seem to think if this test is negative, there are no allergies. You need to make sure you have been tested for IgG reactions. These reactions can occur anywhere between immediately and 72 hours after consuming a food. If you've had your C reactive protein tested and it was normal, chances are your doctor will have told you that you don't have a food allergy too. This is untrue. All a normal CRP means is that you haven't had a reaction to a food in the preceding 2-3 days.
With regards to the MRI you had, have you seen the report? I was told my MRI was normal but when I got hold of the report I found things in it that were consistent with the changes caused by gluten ataxia. The radiologist reporting it just didn't recognise what he was seeing and said the white spots on the scan were inconsequential findings!! Funnily enough, when I researched the findings in depth, I actually found that the spots were the same as you'd find in someone with multiple sclerosis and hence the similarity of symptoms between GA and MS.
As there are very few doctors in the medical profession that really know much about ataxias, you need to be really proactive yourself.
You sure hit the nail on the head! I looked very much like I had MS before going gluten free. One girlfriend of mine who does have MS took me aside at work when I started wall walking and said, "What's going on with you? I want you to see my neurologist.". She even thought I probably had MS. But as is common, many things imitate MS. Mine was gluten ataxia.
My name is Bob and I too have at this point idiopathic ataxia. A neurologist once told me that I had SCA-6. He was obviously unaware of my family history for there is no ataxia in my family. That being the case, I self-diagnosed myself with idiopathic ataxia. Pretty cool huh? Who needs a doctor! Seriously though, the web is a great place to learn more about the disorder. All in all, I have found doctors unable or unwilling to go into great detail unless you find a passionate one. I have never had a neurologist ask me " might it be in your head" but I myself did ask her that question. She responded by calling in another neurologist, and having me walk down the hall and back. The other neurologist responded: "there's no way that's in your head" Comforting? Yes, I am not crazy. Helpful? Not really. You know you body best, listen to it. Ask yourself the hard questions like "could this be in my head" Examine all the angles and don't be afraid to come prepared to your doctor with questions and hypotheses. Pick their brain, that's what they are there for. I go back to my doctor in February, and I hope she brings lunch because it's going to be a long consult. Not knowing the cause of my ataxia is a source of sadness and frustration. We all have the right to know the nature of our problems. With that said, I kindly urge you to explore all options in your journey to identify your disorder. You have a long life ahead of you, the more you know the better you will handle challenges that lie ahead. Hope you let us know how things go...
In my experience I've too had that told to me that maybe it was in my head many times with some Dr's that really didn't understand what ataxia was all about when I think back now. At the time I was going from Dr to Dr. I knew in my heart they were just wrong they had to be. Something deep inside told me that they were. If I would have listened to 1/2 of what they said I'd be worse off than I am now actually. See, one Dr told me that I had ALS that all my organs would die off one by one. And said "Sorry here is some pills", and that I would even die within 4 years (if I would have listened to him I think mentally it could have really messed me up and my body would have deteriorated because of my thoughts would make it more that way. You know that body mind connection? :0) ) This is when I really became more of a believer in this thought.
This thought of what the Dr's have was explained to me by one Dr though. He has ataxia and he said that we know what our body needs to do to maintain so we don't get worse or let our ataxia take hold is to move our body more with focused movements everyday, keep up my Nutrition and keep my life as balanced as I could.
For me I only see Dr's as people. Sure they have many more years of school, but not practical experiences with this ataxia or any kind really so why can't I make a informed guess also about my health?So I take in consideration their suggestions, but also add my thought to theirs most of the time. As long as I dig and find information that could possible help me with reputable Dr's helping point me in the right directions. But Dr's are not God's they are human so they can make error's too. I think everything is a trial and error with this ataxia.
I think if you adapt that attitude, stick to it no matter what other's tell you and become your own advocate Mentally, Physically, Spirtually and emotionally it can help you out too. That's my opinion. :0)
That's why I try to work on learning and seem to always be work on my health as much as I can from others that have ataxia here and try to be open to try new things that sound good to me within my boundaries just in case they work (within reason though). Trying to learn about the foods that I put into my mouth, vitamins, med's etc when and how often. Exercising what can I do that could possibly help me out (my body along with my brain). Always striving to be more Physically Mentally, Spiritually (I feel because I rely on my Higher Power which I call God he guides me) and emotionally balanced starting new and fresh every day.
I was told by a doctor once, that if you don't like your doctor then go to a different one, they are no better than any one else they just have white coats. So I went to someone else and I'm so much happier.
I agree totally with Jeannie. I was told by 3 neurologists it was all in my head and 1 neurologist admitted he couldn't help me and try other doctors. At least he was honest. It seems when doctors can't find out what's wrong with you they blame it on you. I have gluten ataxia. I paid out of my pocket to have genetic testing done. It wasn't until I got the results that I knew what was happening to me. Then I searched for doctors who knew about gluten ataxia. I have a great team of doctors now. I believe if I hadn't taken testing into my own hands, I would be deadly sick by now both mentally and physically.