Has anyone been to an Ataxia Center (specializing in ataxia disorders)? I've been to two different neurologists that have basically told me that they can't answer 90% of my questions and I pretty much hit outside of their expertise. So I am currently awaiting an appointment with John Hopkins Medical Center Baltimore Md. I was told I had a type of ataxia about a year ago, and general cerebellar ataxia was confirmed recently. Not sure on sub type, exact diagnosis, or prognosis. I was wondering what happens at an Ataxia Center? I have my hopes up for all kinds of answers etc. Am I setting myself up for disappointment or will I just hear "sorry there's not much else I can tell you" again?
Hello, my neurologist sent me to an Ataxia clinic. Not sure if it is the same thing. I still se my neurologist every 6 months, and attend the clinic once a year. At the clinic there were 2 neurologists, and a physical therapist. They had my MRI’s and all of the info from my neurologists. They asked questions, and did all of the little tests (like touch their finger then touch my nose). After that I asked questions and they gave their input and suggestions. They told me that they were collecting information from ataxians to learn more about it. They are pushing for more awareness about it, and pushing my insurance co. for gene testing. I was there for 2 hours. I found it interesting and got a lot of information.
I brought my wife to Mass General Neurological center in Boston when she was first diagnosed. You are right, most neurologists have heard about ataxia and can maybe diagnose it but can't treat it. Where we went, there were two neuros who specialized in ataxia. They knew what blood tests to order, what type of MRI to have done, and what neurological tests to perform. They will also suggest physical therapy and where to have it.
Dick
I have been to the Ataxia Centre in London England. The centre does give you lot of information and has all the
departments physio and Mri scans and also management to control the symptoms. I hope that you can get
help, but I am still waiting to find out which I have. Don't give up it might take time to find out.
You should see an ataxia specialist. The ones at Johns Hopkins are very good. They are very knowledgable about current research. When I first saw a regular neurologist, he told me exercise great but would not help ataxians at all. The folks at Johns Hopkins can tell you that is just not true. There are things you can do to help. While there is no cure, it certainly is empowering to know that you don’t have to sit by and let this take control. You are headed to a great center. Good luck!
I went to Johns Hopkins also. Sorry tell you this, but this disease is so rare, and it is different with every person who has it. I have traveled looking for answers, but I have had no luck. Not that it’s a waste of time. They will do some tests and try to do things with you. But I don’t think anyone knows. Good Luck.
We drove to Atlanta to see a specialist at the ataxia center at Emory. They could not help except to recommend strength exercises be done to prolong muscle strength and to stay as active as possible. Some days are pretty good; some days not so good.
YES!!!!!!!!!! You MUST see a REAL ataxia neurologist....Everyone else including movement disorder people are just guessing....... and JHU is one of the best...well worth the wait. It all depends what you are going for. If you want accurate diagnosis and info ....yes. If you want treatment or practical help, forget it. NO real treatment exists, and no medical pro can give you practical advice.That will only come from other ataxians. YOU manage your ataxia, it does not manage YOU.
Would you happen to know names of the Doctors?
RRose said:
You should see an ataxia specialist. The ones at Johns Hopkins are very good. They are very knowledgable about current research. When I first saw a regular neurologist, he told me exercise great but would not help ataxians at all. The folks at Johns Hopkins can tell you that is just not true. There are things you can do to help. While there is no cure, it certainly is empowering to know that you don't have to sit by and let this take control. You are headed to a great center. Good luck!
This is why I created my own "unscientific" diagnosis of my ataxia, I call it "Shoulder Shrug Ataxia"! I have been to JHU, Mass General, UPenn and they all do the ICARS tests (stupid human tricks), but all look at me and shrug their shoulders and say "I don't know". They know the genes that cause it for hereditary ataxia, but not a clue for sporadic ataxia. I have sporadic ataxia and MRI shows cerebellar degeneration, but otherwise I am in excellent shape and in overall good health. I ride my trike about 70 miles a week, swim regularly and do exercizes daily to stay fit. So I've got them stumped, hence "Shoulder Shrug Ataxia"!
I would definately go to JHU though, they are very good and helpful with the knowledge they have of ataxia. We ataxians need to be our own advocates and educate and remember: EVEN THE BEST EXPERTS WERE ONCE BEGINNERS!
Searcher said:
Oh , and I have seen 4 Neuros so far in the past 2 years and not one of them has had a clue what Ataxia is or how to treat it ,they all do the same tests , Emg , Nerve conduction, Mri , but in the end its always the same answer " I dont have a clue " the last one suggested in her written report in june of 2013 that I be evaluated at yale , but my GP did not feel that would help and would not make the referral , I have somehow coerced my PT into making the referral, so how ever you get in DO IT .. I have been to a dozen specialists in the last 2 years , Ent , gastro, Neurosurgeons , Movement specialists , Pain specialists , lung specialists , None of them has a clue why I have these symptoms . So whats the harm in trying yet another lead , who knows it just may lead to an answer . !
yes, I think exercise and good foods is the way to go. (especially when they say - no cure)
Michael said:
This is why I created my own "unscientific" diagnosis of my ataxia, I call it "Shoulder Shrug Ataxia"! I have been to JHU, Mass General, UPenn and they all do the ICARS tests (stupid human tricks), but all look at me and shrug their shoulders and say "I don't know". They know the genes that cause it for hereditary ataxia, but not a clue for sporadic ataxia. I have sporadic ataxia and MRI shows cerebellar degeneration, but otherwise I am in excellent shape and in overall good health. I ride my trike about 70 miles a week, swim regularly and do exercizes daily to stay fit. So I've got them stumped, hence "Shoulder Shrug Ataxia"!
I would definately go to JHU though, they are very good and helpful with the knowledge they have of ataxia. We ataxians need to be our own advocates and educate and remember: EVEN THE BEST EXPERTS WERE ONCE BEGINNERS!
Dear Mommy Medic, I was diagnosed with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause) eleven years ago, although had small symptoms starting about eight years before diagnosis. I was originally diagnosed by a team of neurology specialists at the University of Michigan Hospital, through the process of elimination (ruled out other neurological diseases such as MS, Parkinson's, Myothenia Gravis or a brain tumor, stroke, etc.). I had an MRI, blood work, nerve/muscle test, etc. Anyway, eventually I was seeing a neurologist that specialized in ataxia and was a researcher as well. He retired two years ago and I continue to see a neuro there who specializes in ataxia and is also a researcher. Although there's no cure for my ataxia, it can be managed with adaptive aides (I now use a cane), physical/occupational/aquatic therapy, exercises for strength and balance, healthy diet and some vitamins/supplements (in my case). I see my neuro every six months, as the clinic also has a physical therapist and social worker on certain days. I feel better being monitored by my neuro, and want to keep updated on anything new that might come along. Plus, seeing how my ataxia is progressive, I always have new questions to ask my neuro at appointments. Yes, I think an ataxia center/neuro is the way to go (just my opinion), as so little is known about ataxia...,;o)
hi my name is dave I have sca7 do u subscribe to generations its free and when u read it sometimes it gives u hope.do your homework before an appt.make each one count , so u know who what why and what ? to ask believe me your going to see a lot , here on the east coast theres houndreds no thousands of places to go .find the correct docs then nake appts its so so so cruchel 70% of neuro docs don't knowi must have seen 20 docs when my baby started showing signs you MMUUUUSSSSTTTTTTTT find one that's specific to u my specialist rocks I can contact him anytime not his asst I have hi scell that's how cool he is.because when I whent to see him I had a mountain of papers ,questions etc, I think it reignited his passion to find answers. I had x-ray of my brain the gene test that confirmed sca7 my family history so he could see how it mkoved around my family,i had copies of every test I ever had Hopkins is great go on line and find everthing before u go ,all ataxia is in cerebellum just depends how fast your degeneration is thats y u need a diagnosis then your gene test will tell u your repeate # but you need to know your fam tree who had it when they showed sighns when they died etc
I don't think even the ataxia doctors can help to tell you the truth. I see that people go to ataxia centers and you get the same outcome as the patient who stayed home. If you did work at your neuroligists home I don't think you would get paid for not curing his broken appliance. They can tell you what to do but cannot make it better but wont tell you up front. I tried to fight by joining a gym and doing exercises to help keep me going and I seemed to break down a lot faster so gave up on that, too many doctors are just telling you what they have been told and really giving you a lot of bull. Keep yourself moving but don't overdo is what I have to believe.
It can be a big anticlimax but it has to be done. There is always the chance that you have an underlying condition such as Lupus that can be treated.
We also owe it to future generations by helping to create meaningful statistics.
I am over 70 years and live in UK but can relate to what you are saying. Good luck and stay positive.
x
In all the time I have been going to my neurologist I never got the feeling he was really trying to diagnose my problems to try to help me. I feel he is just documenting what he observes and goes no further. The body is like an automobile and to find out what is wrong you have to know how to trouble shoot but doctors are not mechanics for a reason. Im pushing 80 and my HMO is one who makes money by not diagnosing an ailment I believe. Even non profits like the big profits. I seems. Jerry
There is no cure, or even remotely near it. They are doing stem cell research, but that won't happen in "our" lifetime. I have had it going on 5 years now, and I am the caregiver of my 85 year old mother, don't drive, and have a tryke to do the grocery shopping, trash removal, shoveling, and in the fall, leave clean up, no one helps me at all, not even my family, because they are denial that this could happen to me...I am 55 years old, and sometimes, during the late day I feel like I am 90, and I sleep about 14 hours a night, waking up, I feel like I don't sleep at all :( I use my tryke instead of a wheelchair outside, and it gives the ability to just be free, before I am homebound for good, but I am a very determined individual, and I am doing my best to make sure that does not happen, at least as long as my Mom is alive...Very sad, that they can't doing anything for us. I feel so embarrassed walking into a store, everyone stares at me, and talks behind my back, if I wasn't such a nice respectful person, I would confront them, but they wouldn't understand, anyway. I am so sorry you have this...It is very aggravating. Jenny.
Dear Ones, Ataxia is extremely frustrating and challenging! I have mini-pity parties, but they don't last very long, as I count my blessings! I chose to have a positive attitude, as I can't control having ataxia, I can control my attitude about it (I tend to be a glass half full rather than half empty type of person...,ha!). Believe it or not, this helps me! One of my blessings is this site, where people can really understand and be supportive of one another! It's comforting to know we are not alone in our journey...,;o)