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Ataxia Support Network

Nothing else that can be done


#1

as i was told this by numerous doctors i have now discharged myself from all my hospital outpatient clinics anyone else feel this way


#2

I understand how you feel about discharging yourself. I kinda did that too. I guess you can say I'm only incorporating a few Dr's that I like their thoughts (mostly) and am grouping them together so their thoughts along with my own research and how my body responds to things.

Another words I'm my own health advocate. Which I believe everyone needs to be involved.

Dr's are just human beings, people also. They make mistakes. But the difference is patients sometimes put too much faith in what they say. I guess I don't really. Kinda sad huh?! :0) Some get us some don't yet. And I have to live it so blending works for me. But please don't give up on all of them. I feel that there are a few out there that will work with you. You just gotta find them. I started doing this when I didn't need to really see one for any reason. So when I needed one when I needed them I was on record already and they knew my background etc. Once I found one, then I worked on finding another etc and asked them if they would have contact with the other. I got them to talk about my ataxia, share what they know Dr. to Dr. So when I see one they let the others know what is going on. Win win I think. If they get insulted like your suppose to look up to them like they are a god, that's not the right one in my opinion.

Lot's of Dr's don't know about Ataxia yet. I think it's up to us to educate them. After all they are just practicing hahahahhah.

Actually I find this great to hear. You sound at your bottom so there is only up from here. I just bet you will step up and take charge now because your fed up. I got to that point too being miss diagnosed for years! :0)


#3

In the UK it's not so easy being picky about your doctors. We have National Health Service

here. We get deductions from wages to help pay for this, employers also pay a percentage.

So, if you need a doctor/treatment, basically it's free of any charge. This includes seeing

Neurologists, MRIs etc.

But it has drawbacks. Initially you have to register with a doctor (primary care giver?) within

a certain radius of where you live, Often there are a few doctors based at one practice, so

you can hopefully find one who's sympathetic. To see a Neurologist, you have to be referred

by your family doctor, and usually you can't pick and choose who you see, it's the luck of the

draw being free, often they are reluctant to refer out of their area due to costs to the practice.

Of course you can always pay to be seen privately, it would probably be quicker but on

occasion you might still be seen in an NHS hospital by the same Neurologist who would

have come FOC. This is frowned upon but it can happen.

Re my SCA. In 2000 I had an MRI which showed Cerebellar Atrophy, thought to be caused

by twisted blood vessels putting pressure on the Cerebellum. Another MRI in 2011 showed

the same atrophy, a different Neurologist diagnosed SCA. The original MRI was no longer

available for comparision but I was able to produce a letter containing the findings. We

aren't offered copies of an MRI as a matter of course, pity.


#4

I think you were trying to contact me or remark on a discussion I was having. Anyway suffice to say that my computer acted weird and didn't let me open your file. I am confused too. Whenever I tell my neurologist (whom I like) about taking something new or a certain vitamin, she says "it's a waste of money." But some people here swear by it. Is there a point to going gluten-free when the blood tests indicate that you are not gluten sensitive? Is there a point to taking VitaminB 12 when you have enough, according to bloodwork? I have been writing to various professors of medical engineering and so forth about the development of things that might be helpful. So far, it seems that only exercise seems to be useful. It also makes sense.


#5

If you do this it may mean,waiting 3 mths,6 mths,or even 12 mths, for the same help,just say yes,youu can always say no,but dont do it so often will you,say no,just like in England,say ok try it.


#6

2 links for everyone...
http://fightataxia.org/Tips.html
http://fightataxia.org/Common_Sense.html


#7

Thanks Jonas for sharng the links. They were helpful.

Jonas Cepkauskas said:


#8

Well said Jonas and good advice for everyone to follow. Thanks for the reminders. I have symptoms of SCA6 even tho the genetic test came back negative. It's just a number. I am no longer interested in what number I have. Ataxia is ataxia no matter how you look at it. I pump iron 5 days a week and do my elliptical 6 days a week. I still have to use my rollator for balance. I was in denial for a long time and wouldn't use a rollator because I didn't want to look handicapped. I finally accepted ataxia and finally invested in a good rollator that works. I can finally walk without kicking the wheels of my rollator. Since using the rollator, the falling decreased immensely. Don't get me wrong, if I lose focus or make sudden movements like I ussuslly do because I'm hyper, the fallen will resume. I am blessed to have a good and caring primary physician that cares about my needs and doesn't look upon me as just as a patient but a friend. I bake cookies for the office staff at Christmas to show my appreciation. Now as far as a Neurologist,I haven't found a Neurologist that I like There has to be chemistry among any Doctor and patient. I just eat healthy and exercise which is the best medicine. And I take B-complex, Q10 and fish oil. I'm beginning to play golf by using my scooter with the swivel seat.


#9

I think that what ever you try whether it be an exercise or a supplement or new food, regardless what the test says you had at the Dr's office. It should be given it 3-6 weeks to see if your body responds to it in even a slight way. The only way to really see if something even will work for you is elimination then brought back later to see if there is any differences. Because everyone is different even with the same type of ataxia's.

For me I had a Blood test for Gluten antibodies and it registered normal (that I wasn't sensitive to it). My internist suggested that I go off all Glutens for a few weeks to see if there would be a any difference. After 3 weeks it was so slight if I wasn't journaling about it daily I wouldn't have noticed much. After 6 weeks I lost some weight and also lost my sciatic nerve pain. That gave me the incentive to go longer just to see what would happen.

I've been off Gluten since 2006 and some of the symptoms I've let go off aren't as dramatic but overall I feel cleaner inside and like my Dr. said it's like having a guarantee that I'll absorb all the vit and minerals that I work at eating each day regardless what the tests say.

Like my PT suggested is that we try to rebuild some neurons that were degenerated. She said she read an article about PT and wanted to try out that theory just to see if it could help me at all. She said allot of the same exercises I could do on my own but it's more pinpointed and it would be faster with the direction of a PT.

She suggested I use the Wii Nintendo like they use in rehab homes and some hospitals and suggested that I use the Wii Fit then they came out with the Wii Fit Plus which helps everyone with balance issues, core strength, stretching, cognitive thinking etc. I saw that also being demonstrated at the NAF Conventions with people holding on to a chair to help them balance etc.

I'm not saying that this is a cure for ataxia. But I am saying that what I put into helping my ataxia is what I seem to be getting back. This is a new chapter in my life living with ataxia. I have to take the good with the bad. And make the bad as good as I can. My wish for you is to find what works for you too! :0) There is lot's of trial and error that I go thru but I'm always looking and trying new things in hopes they help. Why not I say? :0)

I guess I'm different because one I see foods as meds, and use my food as meds. But it's working for me to have a program that I maintain.


#10

Hi, don't give up. because they are different Ataxias. there is also different reactions to treatments. find yours. but do not give up keep looking. this is what I do different diet, exercises and therapy. also vitamins (very important)

Good Luck


#11

I went to the Alfred Hospital in Melbourne Au for the first time 43 yr's ago .After many many test's they told 2yr's that they couldn't help me. Goodbye and close the door on your way out. I tried to get an appointment a few weeks ago, and no go. They told me to try again in 12 months time. It makes me wonder do they think I wont be here in 12 months. Or is it because I am not a private patient.


#12

Take ataxia out of the equation...every aspect of life is not about it. If one quits smoking, it is for their general health, not to improve their ataxia. People who exercise, eat healthy, and maintain a positive attitude do it for general health. It has nothing to do with their condition, however it will more than likely improve outlook and the way they deal with their condition. A healthy ataxian is much better off than a sick complaining ataxian. Supplements work the same way. If it improves your health, go for it, or just eat better so you don't need them.


#13

I am in the UK and I agree with all beryl park said in her reply. I cannot afford to go private and would probably end up seeing the same Neurologist anyway!! the last time I saw him ( about 2Years ago) he said there was no point in seeing him as" You have an incurrable disease and as I can only treat the side effects you dont need to come back and waste my time, just go to your GP"

Our family GP has treated various members of the family with ataxia over several years (hereditry) and still hasnt bothered finding out anything about it so I am like you I gave up going for anything to do with it....

I do still go to both physio and speech therapy when needed - its in a different town and brilliant. If on your first visit they dont know about your problems they make a point of reading up on it


#14

I try to keep up with my annual appointment with the neurologist, as it helps to keep up my hopes that we're not forgotten! Even though nothing new is offered, one day there may be a breakthrough, and some new treatment may be developed. At my recent appointment, the neurologist hadn't come across ataxia, and I felt I was able to share some information, and so do my bit to increase awareness.


#15

Hi Joan!

I'm disgusted with the attitude of your Neurologist, and your GP!

Having said that, the Neurologist who diagnosed me said he didn't need to see

me again unless there was a major change. My GP didn't know anything about

the condition either, so I gave him the info pack for GPs from AtaxiaUK.

I realise you live in Scotland and as far as I know there isn't an Ataxia Centre

there yet. We have one here in Newcastle now, would it be possible for you

to have a referral?

Best wishes

Beryl



joan hunter said:

I am in the UK and I agree with all beryl park said in her reply. I cannot afford to go private and would probably end up seeing the same Neurologist anyway!! the last time I saw him ( about 2Years ago) he said there was no point in seeing him as" You have an incurrable disease and as I can only treat the side effects you dont need to come back and waste my time, just go to your GP"

Our family GP has treated various members of the family with ataxia over several years (hereditry) and still hasnt bothered finding out anything about it so I am like you I gave up going for anything to do with it....

I do still go to both physio and speech therapy when needed - its in a different town and brilliant. If on your first visit they dont know about your problems they make a point of reading up on it


#16

Jonas,

Thanks for your words. I completely agree. My most recent blog post focuses on exercise. http://schumant.blogspot.com/2013/06/skeeter-my-exercise-buddy.html I believe it's essential to living a big life.

Jonas Cepkauskas said:

Take ataxia out of the equation...every aspect of life is not about it. If one quits smoking, it is for their general health, not to improve their ataxia. People who exercise, eat healthy, and maintain a positive attitude do it for general health. It has nothing to do with their condition, however it will more than likely improve outlook and the way they deal with their condition. A healthy ataxian is much better off than a sick complaining ataxian. Supplements work the same way. If it improves your health, go for it, or just eat better so you don't need them.


#17

I thought I responded to this earlier,but must have done something wrong--so here goes again--

My PCP is good and really trying, she is groping at straws though and admits even though she knows a little about a lot of things she doesn't know a lot about specialized things. I cancelled my last appointment with the local neurologist because I couldn't see that he could help me any further. He did order all the tests to rule out any other disorders. But I didn't feel that he related to me or the problem. At this point they want me to go to Houston to a specialized neurologist. There is none in our insurance network and we have some more pressing family issues and I've decided that since there is nothing they can really do for me I will not go to Houston at least not right now.


#18

thata just i was under a multi neuro team at west park hospital a neuro rehab hospital where i saw a ot a dieticician and physio and a multiple sclerosis spe ialist they all said thay cant help me bearinng in mind i had histiocytosis as a child which has caused my ataxia


#19

i was under marios hajavasalou in sheffeild it is to for myself and my disabled wife to go just to be prodded and poked


#20

James,

What kind of rollator are you using. Iā€™m getting close to needing one.

Thanks,
Piper