When you go to your neuro, do you go once or twice a year or more? What does your exam consist of? Do you ever feel like something has been accomplished? I can't imagine being a neurologist who specializes in ataxia. It must be so frustrating to only be able to renew shot in the dark meds, go through the same benchmark tests (touch your nose, flop your hands, stand up if you can, draw a spiral, write your name, etc.), encourage PT and ST and then make the next appointment. Hard for the patient, but also hard for the professional.Thoughts? Anything else your doc does for you?
Doesn't anyone have anything to add?
I have no idea what the future holds for my husband. He was diagnosed, but his neuro announced that he is moving cities. We now wait for a new neuro, which is frustrating because we also don't have a primary care physician where we live. It was hard to get this diagnosis and then feel like we have no one to turn to at all for support. We are considering a move to a place with more reliable medical care for the future when my husband will need it. I hear what you are saying about the appointments, though. Already I got the impression that the attitude was that after diagnosis there isn't anything they can do. We asked about ST and were told that was something to worry about in the future. When we get our new neuro I will insist on it now, along with PT, for preventative therapy.
Sorry, I can't add much. My husband was just diagnosed this week ...
Sorry for the delayed response, I just don't/didn't like their ho hum attitude or lack of any advice as to manage my condition..Ataxia was only mentioned once and I must have drank too much..B/S..So for the past 9 years I've stuck to all ????good living and will help any research facility with information on my progression as well as posting on LWA..
Best wishes,Ozzy
I went to my neuro when I was questioning whether I was disabled enough to stop working and so I would have the documentation. Now, I just go to my family doctor. My family doctor can do the touch your nose, walk on heels/toes, stand on one foot, etc as well as my neuro and can refer me for OT, PT, ST as well as my neuro and it's cheaper.
Even when I saw my neuro, she said to come back if I was having more problems. My family doctor can do most things and will refer me when he can't.
Ataxia is incurable and progressive. What can my neuro do that my family doctor can't?
The only thing that I can see that has helped is going for OT, PT, and ST.
CSA is incurable and progresses however it wants. You will probably get more usable info from this website and your own research than from your doctors. There is no standard of treatment but exercise (find what works) but keep moving, working on core and balance, and diet. The PT and OT are great resources and can break down what you need to work on. I've taken things from my daily life that are hard (I started making a list a few weeks before the appointment) and those are the things they try to help me with.
I went to my neuro when I was questioning whether I was disabled enough to stop working and so I would have the documentation. Now, I just go to my family doctor. My family doctor can do the touch your nose, walk on heels/toes, stand on one foot, etc as well as my neuro and can refer me for OT, PT, ST as well as my neuro and it's cheaper.
Even when I saw my neuro, she said to come back if I was having more problems. My family doctor can do most things and will refer me when he can't.
Ataxia is incurable and progressive. What can my neuro do that my family doctor can't?
The only thing that I can see that has helped is going for OT, PT, and ST.
eire said:
I have no idea what the future holds for my husband. He was diagnosed, but his neuro announced that he is moving cities. We now wait for a new neuro, which is frustrating because we also don't have a primary care physician where we live. It was hard to get this diagnosis and then feel like we have no one to turn to at all for support. We are considering a move to a place with more reliable medical care for the future when my husband will need it. I hear what you are saying about the appointments, though. Already I got the impression that the attitude was that after diagnosis there isn't anything they can do. We asked about ST and were told that was something to worry about in the future. When we get our new neuro I will insist on it now, along with PT, for preventative therapy.
Sorry, I can't add much. My husband was just diagnosed this week ...
Kay:
What is ST?