I am at a research doctor and hospital. It seems I know more about my disability than doctors know. That's why its all so frustrating. To me I know I have Ataxia. Its getting worse. I will end up in a wheelchair. I can not tell a story. They can not fix what I have. If they could fix certain kinds then I would want the test. I go to the doctor tomorrow. I have a lot of questions!
I understand your frustration. It sounds ridiculous to say in this way, it happens to me and to some members here.
Some doctors are not helpful, but there are still some good doctors out there.
Try to do some research on the internet, you will discover you know more than your doctors.
As there is no medication for this disease at the moment, what we can do is to adjust our diet, habit, mindset and learn how to maintain our physical condition by doing exercise.
Try not to rely on doctor's comment when you suspect he/she knows not much about your disease or health condition.
But seek / discuss what they know and what you want to know.
Have a good meeting tomorrow.
Good luck for tomorrow.I got quite down when I saw my Neurologist but I know what you mean about knowing more about the conditin than they do.I am getting a lot worse quickly.I am not very good about accepting something.I want to know all about it to see if I can change the progression.It is encouraging to hear how others are managing it through diet and exercise. I really believe we know our own bodies and what we can handle.Some belive a gluten free diet and exercise are helping them.We are all affected in different ways.The Nerologists are only looking at possible outcomes based on their experience.
I am learning far more wisdom from others on the site than frommy Neurologist.I do listen to suggestions from drs but people on this site are much more positive and helpful.
Marie
You are so correct. People could be the first of heredity ataxia.
Iain Stevenson said:
I have had the basic genetic tests done and all have came back negative.
BWGreen. You say that you know that your ataxia is not hereditary. I was told by my Neurologist that I may be the first in line to have developed or aquired an unidentified hereditory Cereballar Ataxia. Your case maybe the same?
Just trying to think outside the box.....
It is what medical scientists concluded that ataxia is a kind of heredity disease.
But some members here are identified as the first of heredity ataxia.
Maybe the cause of certain types of ataxia is not heredity issue?
Maybe ataxia is not a solely heredity issue?
Maybe there are other external factors will trigger ataxia?
I know there is no answer for these questions at the moment.
Just trying to point out there are rooms for medical scientist to find out for this disease.
It also mean that we should not fully rely on their "conclusion", don't give up.
We have to fight with time and try our best to slow down the progress of deterioration.
There maybe other way to maintain the best of our life - we got to find out - so far what we share here is: supplement, exercise, positive mindset, healthy life, healthy diet (or some gluten free diet) ....
If genetic test is getting popular, more people are aware of this disease and don't mind to take a genetic test, more statistical numbers could be established and it will help the medical scientist to understand more about it.
If ataxia is not a rare disease but popular disease for people, pharmacist factory may give more effort to invent new medicine.
This is what just came into my mind.... no offense....
no offense taken! All of us have our opinions on this.Love to hear it!
Hi Lori,
When I asked my Neurologist how I go about having my Ataxia genetically tested, he stated that it would cost me around $ 7000, I stated I am not that keen to find out, which he stated that knowing wont make alter things. Take care Roscoe
Roscoe
Thats why I didn't get it done. There are so many Ataxia's they might not even know. I was tested for the gluten one because that one I could have done something about. But dont have that one. My ataxia is hereditary so that helped somewhat.
Thanks for the reply
Lori
Hi Lori,
From what I can gather, my Ataxia is not hereditary,as I have been involved in family history for many years, and have not come across any one ( so far), with Ataxia, not that there is any guarantees. Have a nice day, Lori
Lori said:
Roscoe
Thats why I didn't get it done. There are so many Ataxia's they might not even know. I was tested for the gluten one because that one I could have done something about. But dont have that one. My ataxia is hereditary so that helped somewhat.
Thanks for the reply
Lori
I was diagnosed with sporadic cerebellar ataxia (non-hereditary?/unknown cause?) as all the blood tests etc. came past negative. My neurologist never pushed me to have genetic testing as he said it was up to me. I decided recently to have genetic testing for recessive ataxia (apparently there are several types). My insurance will cover it (at least I've been told that so I hope so...ha!). Even though there is no cure for most ataxias, I am curious to see if there's any "hereditary" connection as I have grown children/grandchildren. If I test positive for any type, I can at least investigate if there's a possibility that I could pass the gene on to my love ones. I'm not sure what I'd do with information yet as it's all "ifs" at this time. I'll cross that bridge if/when I need to. At this time no one in my family has ataxia except me and I was 50 when diagnosed. I think it started when I was 48 or 49. I'm also having a blood test for a gluten allergy as I've heard/read that some people develop ataxia due to allergy to gluten. Can't hurt, might help....
Good for you Rose! I just had the Gluten test also. No allergies to Gluten. I know for a fact my Ataxia is hereditary. I'm the 5th. person on my dads side to get it. So yes I am scared to death about any of my kids or grandchildren to get it. If I would have known then what I know now. I would have thought twice on having kids. Thats the thing I love them more then anything! And I would never wish Ataxia on anyone. Hopefully they all take after there dad! ha.ha, I hear there are a lot of types of Ataxia. I hope you can find out what type you have. I guess if you have to have this awful disability, you my as well know the name of what kind you have. Now that I think about it. Its pretty bad how there are so many different kinds of Ataxia! Good Luck on your information!
Lori
Thanks Lori! I'll keep you posted whether you want to know or not...ha! Seriously, I believe everything happens for a reason therefore how wonderful you have your children and grandchildren. And, yes, they take after their dad...ha! My kids take after their dad also...ha! I agree totally, I wouldn't wish ataxia on anyone!!! Did you have a good weekend with your friend? More later...Rose
I have SCA2 and all my family had the genetic testing done,It was found to come from my dad, Only 2 out of his 4 sibling had the gene pass on to them my eldest brother and me, While doing these test they also found out i had Charcot Marie Tooth Disease, which my Mum had, this unfortunately both my daughters have this gene problem. it was good to know how much the gene had expanded ( the gag repeat ) from Dad to me, in my case it had about doubled.
I have sporadic cerebellar ataxia (non-hereditary?/unknown cause?), diagnosed 8 years ago. The reason for the ? is I'm going thru genetic testing ( recessive types) at this time. My ataxia has worsened so I want to see if anything shows up. Even though there's no cure, I'm curious as I have children and grandchildren and don't know if ataxia will affect them ( although I'm not sure what I'll do with the information if I find out it's hereditary, guess I'll cross that bridge IF I come to it). Hopefully my insurance will cover the testing (they said they would), or I'll be paying the bill for a long time as it cost $4000....ha! Seriously, check with your insurance first if you decide to pursue it...
Hi MissCake2, I had lot's of geneic testing done @ the Mayo Clinic in Minnisota. I had 37 blood test done back in 2006. That is when they classified me as having Sporatic SCA. My insurance paid for all the testing. Most which were very invasive too, but at that time I was going to do anything to if I could get diagnosed. They have since come out with 6 more blood tests I'm told but my Gene counsler told me there is less than a 1% chance that they will find anything given that there isn't any signs in my family, even if it skipped a few generations since nothing has shown up.
The cost was $100,000.00 our portion was only $7000.00. I thought that was good, but still alot of money for not really getting anything in return. But what I did get in return was negating my death sentence. So I found that exsperience worth doing anyway! :0)
I could go back to UCSF or something but I think why put myself through it anymore. Since the Dr.'s don't know what to classify me as my guess is as good as theres I think. I now just try to focus on what I can do not what's wrong with me. That helps allot.
But if your insurance will pay I'd go for the testing. I'd do it again if I had to do it all over just to rule somethings out. Process of elimination.
I think your doing great with helping keep your body as healthy as possible taking a proacive roll and being your own advacate! Keep going with it! :0)
Hi MissCake2, I stopped my genetic testing. Because I found out how expensive it was. And I didn't feel right if insurance would cover it. Plus my doctor told me that it might not show what kind of ataxia I had. There were so so many Ataxia's that do not have names yet. So for all that money. For something that cant be fixed. Cant stop it in my children. For not knowing what kind.
I know I have ataxia. I know other family members had it. Its getting worse with age. I do what ever I can to do better. And its not costing a dime. But that's just me. I feel I know more then any test can tell me now. If this was fixable! Hell do the tests.
Lori
Hello MissCake2, I was diagnosed 8 years ago with sporadic cerebellar ataxia (non-hereditary?/unknown cause?). The reason for the ? is because I'm going thru genetic testing right now (for recessive types of ataxia, per my neurologist). I've always been curious about my ataxia even though there's no cure yet. If anything shows up I'm not sure what I'll do with the information, as I have children and grandchildren. Guess I'll cross that bridge if/when I come to it. My insurance will cover it, as they said it costs $4000. If you decide to pursue it, check with your insurance first...
I have ca too of unknown cause.My philsophy is that my children in their early 20s are ok now and although i have had all the genetic testing done we still can't find out what has caused it.It would only make a difference if I could do anything b ut I can't.I believe having a good balance of mental health,physical health is best.All this genetic testing can play havoc with stress levels.There ,maybe a cure by the time mine may or may not get it.Perhaps we know too much and don't like living with mystery.There is a lot worse that can happen to my children but they are happy now.Why bother them with all this.
Marie
Thanks for your opinion Marie! My ataxia is difficult for me to wrap my head around, so hopefully my children or grandchildren will not have to deal with it!
Hi MissCake2 - I haven't had genetic tests that I'm aware of - long story - in a coma for 3 weeks; parents were legal guardians during that time - etc.
Similar to Marie Turner, one of my uncles (father's brother) has Parkinson's, and I wonder if there's any connection.
On a totally different yet similar note, my dad apologized for my condition (had an AVM rupture, too, so unsure if that was the reference) because he thought that it was his genetics, but he's VERY VERY Catholic...so that's a lot of guilt...and it might have been the guilt talking.