What's better MS or SCA?

Hello dears,

I admit it's ugly question but I don't know further details of MS.

MS is treated medicaly x Ataxia not.

There're special centers for MS, for Ataxia not (in Czech republic).

When I go to the Neurologist it seems to me that i bother her, when one has MS they can switch meds and everyone is happy.

Well what's your opinion?

I think Ataxia sucks, but I don't have MS, so it might seem just as bad to someone that has it. Sure I see what you are saying about the treatment available for MS, but we have what we have and can't change it to something better (or more treatrable). We are stuck with it. If you haven't read it read the letter from a doctor about "untreatable" diseases. It helped me understand how our doctors must feel about trying to treat us. Here"the link http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/ At this point I am not pursuing any further diagnosis and just trying to do what I can for myself day by day.

Jan,

SCA affects a very small proportion of the American population (approx 150,000 per year). More than 2.1 million people are affected by MS worldwide. As a retiree from the pharmaceutical industry, I can tell you that at one time when pharm companies were FAT and raking in the dough, an attempt (supposedly altruistic) was made to address "orphan" diseases--it was a total disaster and never to be again. WHY..simple logic if you think about it--it takes Billons of bucks to develop any drug, including testing and research and development.

Big Pharma is a profit-driven industry. There will never be a med for SCA and its derivatives.

I agree Granny and Jan. I gave up on Neurologist too. I requested my medical records from a Neurologist and in with the medical records was a letter from the Neurologist to my primary physician thanking him for sending this very interesting patient. I still don't know what's so interesting about except I can't walk a straight line. She went on to say that I am not the greatest historian in terms of symptom onset. Another Neurologist at a research center for ataxia was sooooooooooooooo happy to see me. That relationship didn't last long when she knew that I wasn't going to be a part of her research. I thought Doctor's went into the profession to help and guide people. It just amazes that there are Doctors out there that doesn't shop compassionate care.

granny h said:

I think Ataxia sucks, but I don't have MS, so it might seem just as bad to someone that has it. Sure I see what you are saying about the treatment available for MS, but we have what we have and can't change it to something better (or more treatrable). We are stuck with it. If you haven't read it read the letter from a doctor about "untreatable" diseases. It helped me understand how our doctors must feel about trying to treat us. Here"the link http://more-distractible.org/2010/07/14/a-letter-to-patients-with-c... At this point I am not pursuing any further diagnosis and just trying to do what I can for myself day by day.

Yes I can relate to this, its usually " Nothing I can do ", I guess hes being honest. I also a couple yrs later another neuro. diagnosed me as having MS, not SCA, so I read up on MS, certainly found that they seem well advanced, regarding treatment etc. I believe I have SCA, I identify strongly with other ataxians.

What you are saying is probably true and very depressing. So why give donations? And what is all the discussion about "research"? Is it just a bunch of lies? Is the National Ataxia Assoc or Foundation just a feel-good group, happy to take donations for no reason but self -enrichment??. I suspected so. I think MS is worse. I dont know much about it but I know a woman who has it and she is paralyzed and also mentally ga-ga. My various drs. also act bored by my presence and there are no ataxia groups where I live. (Israel) Here, no one has heard of it or knows that it exists. Zero awareness. I have been told to join an MS group even though I don't have MS, and tosee a psychiatrist who is busy inventing a narrative (because he has no idea what ataxia is).

sidgib said:

Jan,

SCA affects a very small proportion of the American population (approx 150,000 per year). More than 2.1 million people are affected by MS worldwide. As a retiree from the pharmaceutical industry, I can tell you that at one time when pharm companies were FAT and raking in the dough, an attempt (supposedly altruistic) was made to address "orphan" diseases--it was a total disaster and never to be again. WHY..simple logic if you think about it--it takes Billons of bucks to develop any drug, including testing and research and development.

Big Pharma is a profit-driven industry. There will never be a med for SCA and its derivatives.

I find the same thing with doctors. Either an interesting case, or don’t bother me. I always try to educate them whenever I see them, no matter what their specialty. Keep strong all of you! Sharon

My nurologist loves the challenge of dealing with a rare disease!
I personally think both diseases suck. But just live everyday the best way possible!

I believe we might need to look at the other side of the pucture here and try to walk in those doctors shoes for a little while.



First I am not a doctor nor in any medical profession. I have two I curable conditions, and over the years and many moves, I have known many doctors and I have found the greatest majority to be very nice and compassionate.

Do you ever think how a doctor feels when he is faced with a patient with an incurable disease.? They are human and although some of them hide behind tough appearances, they do have a heart. They can feel totally powerless, they may even never have heard the name of the condition. Is it their fault? I do not think so. They may never even see another patient with that disease.

In this situation, you have to establish a "working " relationship with your doctor. Believe it or not, you will become his teacher because he will learn from you and your symptoms and might be able to help another.

patient better thanks to you.

As for the research, I agree that unfortunately, too often politics and greed come in the picture and helping a few thousands with an orphan disease is certainly not as lucrative as helping the millions who die of cancer or diabetes. However, whatever we do to bring awareness to the cause is helpful, just as every penny we donate. After all as they say, the world was not built in a day…

Also, we have to come to terms that there are and always will be incurable diseases, no matter the advances made in medicine. After all, we are all mortals…

But keep smiling and laughing. Get your endorphins going;-)



To come back to your question, Jan, I have no idea. Neither ataxia or MS is good to have.

To say there will never be a treatment for sca is a ridicules statement, what are people meant to do? just give up? The people behind ataxia uk etc are working their butts off and its up to everyone if they can to raise awareness. Both these diseases are awful but there is a lot of research going on hens ataxia uk's 2020 vision, unless its all just lies.

I agree with you. Idon't understand the previous writer's complacency. And if we are being fed lies, that's disgusting to be used like that.. Isnt there a body we can turn to? Congress? The Health Ministry? If no thing is being done, and no cure is planned because it;s not politically worthwhile, can't the tax status of the charity which collects money in ataxians's names, be changed? This is really infuriating and confusing, I wouldlike to hear from someone in the know. . I am tired of looking at hepless doctors too. Polio, AIDS, breast cancer.... cures have been achieved. Even MS has drug options like Copaxone.

Punk said:

To say there will never be a treatment for sca is a ridicules statement, what are people meant to do? just give up? The people behind ataxia uk etc are working their butts off and its up to everyone if they can to raise awareness. Both these diseases are awful but there is a lot of research going on hens ataxia uk's 2020 vision, unless its all just lies.

Hi Neta

I sent an email to ataxia uk to more or less ask if they felt there was substance behind what they trying to do. What I got back was encouraging. The fact that I am mostly interested in sca2 it was this that was mostly discussed. I was told that glaxo, smith and kline [ spelling probably wrong] who are one of the biggest drug companies in the world are financing research into the CAG repeat sca3 which impacts on sca 1,2,7 and 17 I think. I would like to think I have not been given a bare faced lie. I also told them about my frustration at trying to tell people in the public eye and businesses about ataxia. I was told to concentrate locally i.e. papers etc , so that's what I will do for as long as is needed. Sorry I cant forward the info onto you but I am not that computer savvy. I don't know how easy it is for you Neta but if you e mail ataxia uk with your concerns about the 2020 vision I am sure they will get back to you with loads of info about research. I know the fat cats in certain charities have been getting a bad press lately but I don't believe that is the case here.

Punk, I just wrote a whole long reply and it vanished! I will be briefer this time. I am sure you were not lied to. I will go on a charity watch dog site and se whatexecs of NAF are earning. I can't stand this lack of a single address. Maybe the Britsare better at this sort of thing. Everyone, whether 100,000 strong or 10 deserves a chance at a better life,

Punk said:

Hi Neta

I sent an email to ataxia uk to more or less ask if they felt there was substance behind what they trying to do. What I got back was encouraging. The fact that I am mostly interested in sca2 it was this that was mostly discussed. I was told that glaxo, smith and kline [ spelling probably wrong] who are one of the biggest drug companies in the world are financing research into the CAG repeat sca3 which impacts on sca 1,2,7 and 17 I think. I would like to think I have not been given a bare faced lie. I also told them about my frustration at trying to tell people in the public eye and businesses about ataxia. I was told to concentrate locally i.e. papers etc , so that's what I will do for as long as is needed. Sorry I cant forward the info onto you but I am not that computer savvy. I don't know how easy it is for you Neta but if you e mail ataxia uk with your concerns about the 2020 vision I am sure they will get back to you with loads of info about research. I know the fat cats in certain charities have been getting a bad press lately but I don't believe that is the case here.

Are charities taxed?

I think (in the USA, at least) unless they are cheating, they have a tax-free status. N

Punk said:

Are charities taxed?

I have Ataxia and lots of people think it is a bit like MS but I have two friends with MS.One is in a wheelchair and can talk.The other who I met in the days I was swimming who could do a lot of things but had more of an emotional impact and kept crying.I think it depends at what stage is your Ataxia and MS.The last stages of MS are horrific .Everyone has heard of MS and not many have heard of Ataxia.

It is a bit difficult to explain to Joe Public especially when you find talking so difficult as I do

Physically some of us are on a downward spiral but my Ataxia has not affected my mind.I lump myself with MS and Motor Neurone but all these ghastly Neurological Diseases impact the individual in different ways.

Physically I cannot balance so I cannot walk,have difficulties with speech and writing but I can get round these obstacles with my mind.On the plus side I feel no pain and am healthier and less anxious than I was.

I think there are [pros and cons with all the Neurological Diseases.I asked my Neuro about research here in England.

I was told there is plenty of research going on into the Ataxias.But I suppose it is not so attractive to the Media.

Maria contact ataxia uk and ask them about research going on. Ataxia isn't one of your trendy causes to donate to and I guess most people who contribute have a family member or know someone who has

Neta, here are the address, phone number and fax for the NAF

O
National Ataxia Foundation (NAF)
2600 Fernbrook Lane North
Suite 119
Minneapolis, MN 55447-4752
Tel: 763-■■■■■■■■
Fax: 763-■■■■■■■■
Email: ■■■■■■■■■■■■■■
http://www.ataxia.org

Description: Encourages and supports research into the hereditary ataxias, a group of chronic and progressive neurological disorders affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.

National 501© tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.

According to “charity navigator” website, they spend over 90% of their revenues for research. This is pretty good for a charity.

Thanks Cicina, I, too, checked them out at Guidestar, which checks out companies, both for profit and non profit and works with American Navigator. I read their tax returns from 2011 which they or someone posted. After some searching, I located the name of their president, a woman named Charlene. They have, it seems, 6 employees and a salary role of some $350,000. It also says they had expenses of $1.4 million. I am not an accountant or a tax attorney. I am not sure how to decipher it all. Is anyone? Are you? They also seem to have various satellite offices in different states.

Cicina said:

Neta, here are the address, phone number and fax for the NAF

O
National Ataxia Foundation (NAF)
2600 Fernbrook Lane North
Suite 119
Minneapolis, MN 55447-4752
Tel: 763-■■■■■■■■
Fax: 763-■■■■■■■■
Email: ■■■■■■■■■■■■■■
http://www.ataxia.org

Description: Encourages and supports research into the hereditary ataxias, a group of chronic and progressive neurological disorders affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.


National 501(c) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.



According to "charity navigator" website, they spend over 90% of their revenues for research. This is pretty good for a charity.

All,

A little clarification to my first post on "Big Pharma" and "Orphan Diseases". While it remains true that a the Pharma industry have not been spending research bucks on our condition(s). They, in fact, will provide the manufacturing and marketing resources when a private or CDC product is offered (now the Pharm industry avoids the massive R&D to develop a drug).

An example is the drug, Taxol, a drug developed for Ovarian Cancer. A Big Pharma, is still profiting from the discovery after 15 yrs +. Therefore, there remains hope that such a discovery for SCA has potential.