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,,,,

Dont blame you for getting angry.. we have similar frustrations in UK with the important exception of not having to pay ourselves. However, we do 'contribute' to NHS over the years and these 'consultants' get paid by NHS so they are still 'earning' a living

I used to take leaflets published by Ataxia UK with me in the early days.

SCA is not easy. Call the National Ataxia Foundation @ 1-753-■■■■■■■■. They will help. They started me on the righ tpath after "floor sweepers" at places like University of Southern Californai Medical School told me to purchase an OTC energy pill. It is not easy. Call NAF.

I understand your feeling and anger Ataxia is just a word Docs use because they don’t want to understand how we feel or manage. Because we adapt they think were ok,but we also suffer in our heads one moment thinking why then thinking of ways we can keep going without specific help we ent got ms or cancer so we can manage. Just put in suitable accomodation with carers who not got clue about Ataxia an that’s it. No follow up or help.



John "JC" Colyer said:

That's the most absurd & insulting thing I've heard a Dr. say . and they say many, sorry your treated like that, no empathy

You had condition longer and been trying find more help for us. No empathy is very true

Your GP is a uninformed and definitely has a few gaps in his medical knowledge. I have SpinoCerebellar Ataxia type 8 and have been diagnosed as such since 1998 (which is 16 years) and ataxia is not a secondary symptom of my illness. If your GP would like to go online there are plenty of reputable sources that could him more information if he needed it. Keep annoying him because he obviously his medical knowledge updated and it isn't advisable to continue without full knowledge.

Here is a definition:

ATAXIA

You’ll be probably saying “What is ataxia?” and “Why should I help?” Well to answer the first question, the new leaflet ‘what is ataxia’ explains how the different types of ataxia are inherited see http://www.ataxia. org.uk/pages/ information- publications. html, this is a free ‘online’ publication by Ataxia UK but briefly it is as defined by them -

What is ataxia?

Ataxia is the name given to a group of neurological disorders that affect balance, coordination, and speech. There are many different types of ataxia that can affect people in different ways.

Who gets ataxia?

Anyone of any age can get ataxia, but certain types are more common in certain age groups. For example, people with Friedreich’s ataxia are usually diagnosed in childhood or adolescence.

How many people have ataxia?

Around 10,000 adults in the UK have a type of ataxia. Ataxia UK is currently funding research to find out how many children have the condition – it’s thought there are several thousand.

Is there any cure?

Some forms of ataxia are treatable, but in most cases there is still no cure. We are funding a wide range of research projects to try to find treatments that can help ataxia, and ultimately to find a cure.

What causes ataxia?

It's important to remember that ataxia is a symptom and may occur as a result of many different underlying conditions (such as MS), and may also occur due to head trauma or intoxication. Ataxia not due to any of these factors may be inherited (caused by a faulty gene which is passed down through families) or non-inherited (sporadic). The most common inherited progressive ataxia worldwide is Friedreich’s ataxia, which is caused by a defect in the gene which is responsible for producing the protein frataxin. Research has already shown that the resulting deficiency in frataxin affects the function of mitochondria in cells and makes them more susceptible to oxidative stress damage. Discovering how a gene works is crucial to identifying possible ways to treat the condition. To date around 28 genes have been identified which cause spinocerebellar ataxia, most of which have been named by number (eg SCA1, SCA2, SCA6, etc,.) and over 30 other types of inherited ataxias have been identified, many of which have also been linked with certain genes.

Research is ongoing to identify other genes which cause inherited cerebellar ataxias and discover how they exert their effects. However there are still many people who do not have a specific diagnosis for their inherited ataxia. These people would be diagnosed as having idiopathic cerebellar ataxia and there are many researchers focussing on finding new genes and new types of ataxias.

Don't give up the fight or right to an answer to your problems. Keep track of your symptoms and be able to communicate to your Dr. There is hope that.

"experts" get their golfing activities and BMW´s in promoting big pharma - we are not financially lucrative in that dept.- not belonging to the affluent populace with minor ailments, that pharma and doctors are geared to.

Dear Searcher, If ataxia does not exist, why do I have gait/balance, dexterity, speech and swallowing problems that have progressed over the years? Why is my cerebellum atrophying, with no other apparent cause? Absurd, that doctor needs to go back to medical school! A lesson in empathy wouldn't be a bad idea either! My best to you in hopes that you find a caring, compassionate neurologist! They really do exist, as I have one! ;o)

This doctor needs a therapist. He/she is out of integrity and overwhelmed. I am experiencing something similar and may have to find another doctor. You might want to find another doctor.

You can petition your insurance, as the 'in-network' neuros are not qualified. You can explain to the insurance that they have no idea what they are doing iin your case, but want you to keep returning, costing the insurance big bucks. You need to see a real ataxia neuro...no one else will do.

First, I would find a new neurologist. His behavior is atrocious. You and your doctor should be working together, not against. Second, I have been in healthcare most of my life and I can tell you that ataxia by itself is considered a symptom so you need to get diagnosed with a Type of ataxia. When I first went in with symptoms (my dad was diagnosed with SCA1) they did genetic testing (I don't know the name of the test) and found the specific type. I haven't been to an Ataxia clinic so I don't know what their requirements are but you may want to check. If you don't need a specific diagnosis, I would find a doctor that will refer you. If they need a specific diagnosis then I would find a neurologist who is willing to help you find one and then refer you to the clinic.

contact MDA, the muscular dystrophy association will get you to a clinic and help generously with the cost~

How completely frustrating. There's absolutely nothing wrong with getting "a second" opinion. In making your appointment with another doc, you might want to ask or to search on here for recommendations for an ataxia specialist.

I empathise with what you say. For 4 years I have been seeing medical services, "under investigation" and today was the 5th time seeing Neurologist where another Neurologist had diagnosed ataxia. I showed her the letter from the diagnosing Neurologist and further blood tests, some 6 vials of blood were taken for tests. I left feeling that she didn't believe anything was wrong, a collection of symptoms which has no cause at present. I feel like a performing poodle at present. In despair and feeling unbelieved

Hi Searcher,

I empathize with you. I have the same experience with almost all of my docs. I would like to organize patients of all problems that do not get resolved in a timely manner to stand up for our care. I would like to 1) make decent health care a constitutional right, 2) make specialists accountable for their specialty knowledge, and 3) make all physicians accountable for lack of treatment. What I mean by the latter is that they get a maximum of visits to determine the diagnosis or to develop a plan of treatment, overseen by a non-professional group or organization that has the power to revoke a doctor's license. Physicians are neither gods nor special people. They do not rank above patients and have no right to decide what happens to or with any patient, unless the patient cannot decide for him/her self and there is no close relative or designee to mak that decision.

Norbert, if you organize something I will stand with you.Or, perhaps you know of an organization that exists.This is an absolute necessity for Ataxia patients. We deserve a clear diagnosis and treatment plan.

I guess that I should get on here, but all symptoms are not the same. I have learned that the term "ataxia" is used differently by different people in different situations. I have been told, and seen written, that ataxia is really not a CAUSE. It is a shorthand discription of the symptoms:failing gait/balance. We can easily see those symptoms, but we CANNOT DETERMINE THE CAUSE. Let's not get caught up in the terminology. My gp is very good. My neuro fits the attitude of your complaint. He will not look at publications that I have asked about. His answer is simple: It is not treatable. I had to badger him to get the dna sequenced. I do hve a mutated gene, but it is not one that has been identified as yet.So he admitted that we were beyond his general knowledge. So, yes, I have ataxia, not yet associated with our already identified problems. Now I am back to see him for 15 min. of argument, wait two months, and start again. I did get refered to Johns Hopkins, but treatment was not any different. He did say that my cerebellum was fine.?!? How can that be? He said it was ok because I could form a circle with the tips of my thumbs and index fingers, and then rapidly open and close the connection??!!

Very unfair and discouraging. My thoughts are with you.