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Ataxia Support Network

Doctors?


#1

I have been referred to a movement disorder clinic near me. Instead being scheduled with a “seasoned” doctor they scheduled with a new doctor. New as in she’s 32 and I guess has finished her residency? So should I ask for one of the “seasoned” doctors and what should I look for in a doctor?
Lori


#2

Don't know how to advise you, but I would choose someone who focused on movement disorders above "seasoned". Your physician should be knowledgeable, treat you respectfully and listen to you.


#3

Hi there,

I recently saw a youngish dr.though not quite a resident, too. Frankly, I cant say there is much of a difference between the super drs and the small fry. Mabye drs. abroad are a bit more adventourous, not sure. Anyway, it's big world out there but I assume (maybe I am wrong) what one dr. knows, so does the other. This being said I am not sure that I would see an intern or resident. But I am sure this is for psychogical reasons. Because these people might be so young!!!!I do think different physios, do and can make a difference. (I think...)


#4

A typical neurologist is of no value to you. You MUST see a doctor experienced with ataxia, preferably a research clinic at a university. Others are simply not qualified.If you need to go 100, 500, or even 1000 miles, you need to figure out a way. Anything else will just snowball your frustration.


#5

I was referred to a movement disorder doctor, and the doctor was not a neurologist. He did some research on ataxia, and some blood tests to rule out glutin, or alcohol related ataxia, but he didn’t specialize in ataxia. He didn’t know much about it. If this doctor isn’t a neurologist you are waisting your time and money.


#6

Dear Iwentdownunder, You could give her a chance, as you may really like her. I see a neurologist who specializes in ataxia, and is also a researcher. I prefer a doctor who really listens to my concerns, which he does, as well as give good advice. Also, I agree with Shumant..., ;o)


#7

It also depends on your agenda....Have you been actually diagnosed? with a certain type? Once that happens, you need to be proactive, as other ataxians will be of more help than the medical community. Support groups, events, chats, forums, etc. I run The Fight Ataxia Project outside of Chicago. We are affiliated with Dr. Christopher Gomez from the University of Chicago, who runs the Clinic there, and is one of the premiere ataxia minds on the planet. http://fightataxia.org


#8

"Every expert starts out as a beginner", she may be a new ataxia doctor, but if she is not given a chance to see patients because she is not "seasoned". She will never become "seasoned" to really be helpful to any of us. Give her a chance, she deserves it and so do future ataxians for when she becomes "seasoned"!!!


#9

She is a neurologist who specializes in movement disorders.


#10

Hi Lori - My personal opinion is that since she’s a neurologist who specializes/knows about movement disorders, she’s worth investing in, and it’s probably a win-win for her, too - to become “seasoned”; however, you might consider “pre-screening” her to see what experience or knowledge she has of Ataxia specifically. Also, is it possible for you, insurance-wise, etc., to get a second opinion of a “seasoned” doc?


#11

I have found that new doctors often have fresher more advanced approaches to illnesses. I have always been lucky to get younger doctors, except for my GP who is of the old school, but really I feel you will probably do quite well.


#12

My doctor is young too. The advantage is that he just finished medical school so his medical knowledge is current. Plus we communicate a lot over email and he always gets right back to me. I have a lot of confidence in him. Give her a chance. You can always change doctors later if it does not work out. Ataxia is a movement disorder. My doctor does research on ataxia at a prominent Boston, MA, USA hospital so not all neurologists are bad.


#13

A young dr is not bad but help her/him in helping you. I saw a private neurologist in harly st and he said my condition is because of age"and it was when I saw an ENT specialist that my cerebellum was mentioned as a possible source of my symptoms. Wish you luck"." Yes neurologists in some countries are less conservative


#14

What questions should I ask to screen the doc?


#15

Some ideas for you / beneficial pre-screening questions might include:

-What kind of knowledge, research, and/or hands-on experience do you have regarding movement disorders? More specifically, Ataxia?

You might ask a question to see if you have the same philosophy on treating a symptom / if it’s a good fit; i.e.
-Since there is no cure currently for ataxia, what is your preference to “quiet”(?) an ill - medication, holistic care, Eastern medicine, all or none of the above?

-Just a general/non-medical question to allow your gut instinct to make the call and also to see if she is actually listening to you and wants to team up with you to help you.

Here’s a search on the topic that I did for you; however, you might want to search various words/topics yourself, in which case, you can use the search box located up by the sign in link.

http://www.livingwithataxia.org/main/search/search?q=Questions+for+the+doctor


#16

The older Neuros were not able to tell me anything.Even the highly trained Neuro I go to says there is no cure.

At lleast the younger ones are more enthusistic. I went to a Movement Disorder clinic for my diagnosis aand when I got the correct diagnosis then I asked to be referred to an ataxia specialist. There are so many ataxias that with some that even the specialists are confused. I thhink all of them generally want to help but some with this disease have to hope in something else.


#17

Gee wiz, I got a letter from the neuroscience clinic. It says to plan on your visit lasting up to 4 hours in length. Why will this take me up to four hours?


#18

Dear Iwentdownunder, Have you already been diagnosed with Ataxia, I go to a movement disorder specialist also who is the top neurologist in this area , to be honest it has been four years and I have spinal cerebellar ataxia, I love her very much , but I can feel myself going downhill as each year passes, she is very kind and can see the decline but takes her time with me, on one visit she had a resident and asked me if he could do my evaluation that day, I said sure, he was very good, went thru everything , then she came in and went over what we did, I would give this dr. a chance because I think they get together anyway with the other Dr and go over everything,


#19

Here is some info from a different post that might help:

http://www.livingwithataxia.org/profiles/blogs/preparing-for-an-appointment-with-a-new-doctor


#20

Someone else mentioned Christopher Gomez, who I also see. I live about 90 miles from Univeristy of Chicago and the traffic is horrendous and my insurance doesn’t cover it but I don’t care because he is amazing. I have been to numerous neurologists and no one knows near what he does as a premiere researcher. Most all other doctors know next to nothing about SCA and most have to look it up. That’s fine but I don’t want them dealing with me and making recommendations with no idea what they are doing.

Besides his great medical mind, Dr Gomez truly cares about his patients and that is pretty important. So I would recommend someone knowledgable in the disease as well as a good listener, as rare as it is. So, the first criteria I think would be knowledge. Once you get to know the doctor you will see if a good relationship develops.

Some of the young residents working with Gomez are quite bright and interested in patients’ experiences with good ideas, so youth can be an advantage as well.