I'm Lisa, a new member to the site. My official diagnosis is sporadic idiopathic ataxia. My body tells me that diet and stress play a big part in my health. MRI's, allergy testing, blood work, etc are all coming back fine. Today when I met with my doctor she said, "you know, this could all be in your head."
It occurred to me that there has to be a better way for her to say what she was implying. I wish I had probed a bit more in the office. But I'm wondering, have your doctors said similar things? If so, how do you make sense of it?
Thankfully I'm scheduled to see a neurologist who specializes in ataxia next month. Until then, I'd love your thoughts, or perhaps, this has been discussed before? If so, please send me to the right forum!
I am new here too and have to say I just love it when people say things like "it's all in your head" - I've heard it from doctors, friends and family. Well yes it is all in my head my brain is not working properly and it's affecting my ability to function and I would like to know why. I asked my doctor once to refer me to a psychiatrist because I was certain I was going mad but he refused sad I wasn't but still couldn't give me any answers about what was happening.
Recently I saw a neurologist for the first time and she has made diagnosis of silent/atypical migraine and says that they can cause ataxia symptoms that can be prolonged - so it is all in my head!
That's so funny! When my doctor said that I thought - well "duh! Of course there's something going on in my head!" I'm so glad you were able to find some answers for yourself and hopefully some comfort as well. Thanks for the support.
ladeejane said:
Hi Lisa
I am new here too and have to say I just love it when people say things like "it's all in your head" - I've heard it from doctors, friends and family. Well yes it is all in my head my brain is not working properly and it's affecting my ability to function and I would like to know why. I asked my doctor once to refer me to a psychiatrist because I was certain I was going mad but he refused sad I wasn't but still couldn't give me any answers about what was happening.
Recently I saw a neurologist for the first time and she has made diagnosis of silent/atypical migraine and says that they can cause ataxia symptoms that can be prolonged - so it is all in my head!
Thanks John! You know, as I walked to the car I was thinking we really need to educate doctors. I'm still not sure exactly what she meant, but the phrase is so loaded - it's just not helpful in the least. Wanna start a rebellion? (wink!)
John "JC" Colyer said:
Its shameful and unprofessional for a doctor to say that , pure ignorance!
All I can say when I hear something like that is to remember - half of all doctors graduated in the bottom half of their class and we can't find out where our doctor placed - except by experience!
Just to shed some light on this. Medical school is all about drugs and procedures. End of story. If you want to get well go outside the box. Www.worldhealth.net. You will find REAL Dr’s here.
I have never had a doctor or neurologist tell me that. My neurologist told me I had neuropothy and sent me to a specialist in Rochester to get a second opinion. The specialist ran some tests and diagnosed me with ataxia. I agree, this statement was very unprofessional. You know there is something wrong and the statement " it's all in your head " doesn't help. Your neurologist should be able to shed more light on the situation. Good luck.
Hi Lisa - I agree with others that it is very unprofessional for a doctor to make this comment but it is apparently not uncommon. My husband's GP said this when he had a micro stroke [diagnosed by the hospital].
When I received diagnosis, of CA, the neuro explained that it is a tracking of messages problem from back brain to front brain. All my tests gave negative results [where appropriate!] and only MRI showed slight shrinkage of cerebellum.
I have had all the tests more than once and still have no definitive diagnosis or prognosis and can only try to stay healthy as possible.
Women get this WAY more than guys do from doctors. I brought my husband with me to doctors appt. (I couldn't drive by then anyway) to be my advocate. The doctors would start in with "This is just in your head" stuff and he would calmly but firmly assure them that that was not the case. My husband is a brilliant man and it was hugely helpful. I hate to say it, but doctors are biased against women.
If you can have a mature & intelligent guy to come with you to the appointments, I think you'll have better treatment. Someone who is willing to be an advocate for you and take notes/ask questions. Someone who's willing to not just take the doctor as THE authority.
What a shame in this day and age. Even with female doctors, this is still true.
Read what you can on this site regarding gluten ataxia.
I wonder if having my thymus still present plays apart in my indiopathic cerebellar ataxia…I have not been diagnosed with Myasthenia Gravis…please shed some light if you can… I am male single 57and in London.
It's easy to be frustrated and mad, but look at it a different way. Many times in life we say "I wish they would teach that in school". Fact is, ataxia is not in the realm of most doctor's learning cirriculum. It is a highly specialized disorder as are most neuro degenerative conditions.If you had a super high end Ferarri with an intermittent problem with the computer system controlling acceleration or braking, you wouldn't take it to Midas or Pep Boys. You wouldn't even go to the foreign car specialist the next town over. You would go to a Ferarri dealer that may be a thousand miles away and if the car needed a factory speccialist to diagnose it so be it.
Relate that to an ataxia neurologist. Your primary MD really knows nothing about ataxia. The neurologist on the other side of town might express some familiarity, but 99.9% of the time knows no more about ataxia than your grocery store manager. If ataxia is mentioned even in passing, you need to go to the top of the food chain...a university ataxia research center. Many times your conventional neuro works backwards, testing for things to rule out. Start with ataxia!!!! That is why it is MANDATORY to waste no time, effortt, or money. No matter what it takes, do whatever to see the right doctor. NOTHING else will work.
As far as the one who said it might be imaginary probably gets whack jobs who do imagine things, and there are plenty out there. Take the time and opportunity to educate. Tell them to go to http://fightataxia.org, or the NAF site. We who have knowledge need to share.
Hi Lisa, I NEVER post or reply to this site, but I was compelled to after this popped up in my email. I actually disagree with everyone posting because I see this in a different way. Yeah it hat could be that your neuro meant this in the d*ck way that most people seem to have taken her comment. However she meant it, I think you could use it to see things from a different angle.
I have SCA with an unknown (assumed to be new) number. I'm 35 and my symptoms had gotten pretty bad a few years ago. I was using my cane alot, not able to read that much, had to limit my driving, was falling and hurting myself a lot, etc. I left my husband, took a medical retirement from my job, started back at school for a dream major I'd given up on long ago, started volunteering, cut out all family and friends who were stressing me out, and basically concentrated on myself totally for the first time in my life. I stopped thinking about the ataxia. Within a year my symptoms improved probably 200%. I still have neuro symptoms if I'm tired or doing too much, but I'm so much better that it doesn't limit my life anymore and people don't know there's anything wrong with me unless I tell them. I am so much happier. I'm planning my future the same way I did when I was a kid and didn't know I had ataxia.
In a way ataxia IS in your head. It's in all of our heads. Taking drastic steps to make your life as good as it possibly can be has a dramatic impact on your life. It could be that your neurologist was being a jerk, but it could also be that she had a ham-handed way of trying to tell you that you need to restructure your life so that the things that cause exacerbations of your ataxia are no longer a factor.
1. Clearly it may be difficult for doctors to make a diagnosis where symptoms of ataxia exist and tests results are all negative and while it might not be appropriate for all doctors to undertake specialised training in ataxia maybe and especially at the general practice level they should be trained more in appropriate referral strategy and interpersonal skills.
2. The other thing is maybe doctors could tell us what we could do to assist them to assist us - I know for years I have been under-reporting my symptoms thinking they were not relevant or I had forgotten them by the time I saw the doctor. The doctor rarely prompted me to tell him about these other symptoms. I now keep a diary of my symptoms which although still doesn't record everything is better than my memory.
Dear Julie, Welcome to this site. Hopefully you'll find the support you need (obviously, you didn't get any from that ignorant doctor). No, my neurologist never said anything like that. Thankfully, you are going to see another neurologist! I'm glad you're getting a second opinion. I believe we realize when something's "not right". As others have said, yes, it's "all in your head", although not mentally, but physically! Hopefully you'll get the answers you deserve soon! Keep us posted please! Thinking of you...;o)
My family pratice dr watched me try it walk and sent me to a neurologist. I'm glad of that but I had to go through a million tests, MRIs and scans before they came up with cerebullar ataxia diagnosis. The drs were all understanding and just as confounded as I was. My family was not. They couldn't understand it at first. They said, "Well... just walk!" To my family walking is an easy basic movement like eating or drinking or breathing even. Now I depend on a walker. It takes all my concentration to walk or to write. They can see the struggle and they finally "get it".
Seeing a neurologist is a "step" in the right direction.