My treating neurologist is an idiot and openly tells me to my face that I can't get better and there there it's so sad. I had to rehab myself and regained most of my function. I only have problems now if I'm tired or something else is wrong with me, like I have a cold or lost sleep.
The research neurologists studying my form of ataxia have helped here and there, but not as much as just researching and doing things on my own.
I'm pregnant now, so I'm being really careful. But before I went from occasional incontinence and a cane to running outdoors a few days a week and standing for hours, even while drinking. No one could tell anything was wrong with me. Also I'm in grad school so I'm around a lot of doctors casually, and I can tell you for sure most of them aren't as smart as the kid who bags your groceries.
Marjorie, may I ask where you're located. I saw my first doctor back in 04, he was in MN at that time. He then moved to Chicago, and I saw him for 3-4 years there. I'm in Ohio and it was quite a drive, eventually he recommended me to a closer doctor in Ann Arbor, MI. If you need to go out of state and are able to, I would recommend it. If I depended on clueless doctors here, I don't know what would my situation.
Hi Gianluca, I see a neurologist at the University of Michigan Hospital in Ann Arbor, Michigan also. I live in Michigan, about 25 minutes from Ann Arbor. I see Dr. Shakkottai. I use to see Dr. Gillman, until he retired in November 2013. If you don't mind me asking, what type of ataxia do you have an who do you see? I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause).;o)
Mine is unknown at this time, Dr. Todd my Dr., believes there's a recessive component though. Wasn't Dr. Shakkottai one of the new doctors who came on when Dr. Gillman retired? I saw Dr. Gillman for a couple of years, two wasted years. After that I insisted only Dr. Todd or Dr. Paulson. If you're not happen, by all means you should change. I'm very happy with Dr. Toss, but I'd prefer Dr. Gomez in Chicago.
Hello Hans..actually I would very much like to hear the name of the neurologist in the Netherlands, because I live here.
Thank you in advance for your response, Elle.
Hans said:
Generally speaking It is my believe (fed by experience) that neurologists think in large and severe symptoms that match the statistics. In case of mild, fluctuating or not yet visible/measurable symptoms they tend to ignore all possibilities. I must say that my latest neurologist is different! (he's actually a neurosurgeon)
He never say's: no positive lab tests so nothing going on, no he say's: if it doesn't show in the lab results it doesn't mean that it's not there. And that makes all the difference, keeping the options open for the patient is clearly hindered by certain symptoms.
It would be pointless to name him here because he works in the Netherlands and the question is aimed at US patients.
Diet and exercises! I have seen a Functional Neuro here in Canada he did allot of blood work put me on the Glenten diet etc they seem to be the only Dr that study this.