Patient Angst: When You Just Have To Say ‘No’ To The Doctor

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Patient Angst: When You Just Have To Say ‘No’ To The Doctor

Postby Cece » Wed Jan 08, 2014 11:14 am

http://commonhealth.wbur.org/2012/08/pa ... the-doctor

This could go in the main forum but I think it goes here as well because it often takes the courage and willingness to go against your neurologist's advice in order to go for CCSVI treatment.
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Re: Patient Angst: When You Just Have To Say ‘No’ To The Doc

Postby Vivianne766 » Sun Jan 12, 2014 2:42 pm

Tnx Cece. I'm glad I read this as I have decided not to go back on meds.
I have asked my doc. ,
" If you don't know what causes MS and how it works, what makes you think these drugs are of any benefit ?"
Still waiting for a convincing answer.
When I look at the many, many drug packages she has given me, with all those colorful pictures and expensive graphics and prints, I know where the $$$ is spent. They usually have a picture of someone that could be any of us, in the nature, outdoors, with a dog or hiking or biking ... all the things I long to do.
That, tells me this is a feel good info. package of BS.
My neuro kept talking about the 1 death case in CCSVI but never gives any info on deaths from tysabri or gilenya.
I don't trust her.
X(
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Re: Patient Angst: When You Just Have To Say ‘No’ To The Doc

Postby Brainteaser » Sun Jan 12, 2014 6:26 pm

I'm not sure why this is all goodies versus baddies with ccsvi being the good guys. There are also a few ccsvi cowboys out there from what I can see.
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Re: Patient Angst: When You Just Have To Say ‘No’ To The Doc

Postby Rosegirl » Mon Jan 13, 2014 5:52 am

The real problem is that we usually start with a visit to a doctor who is a general practitioner (GP). He says our problems are neurological (which they may be) and sends us to a neurologist. The GP isn't trained to know that those same symptoms, even if they are neurological, could be treated by a neurologic dentist. Or a massage therapist. Or an acupuncturist. Or a radiologist who treats CCSVI. Or a chiropractor.

People who have enough time, money, hours of googling symptoms, etc., have all given us examples of their successful treatment.

It's not that neurologists are bad or greedy (any more than those in any profession). They just use the knowledge they have to treat us. And they refuse to believe that there could be another cause or treatment, even when they can see that their methodology isn't working.

Unfortunately, that leaves us on our own to gamble that the next practitioner we find might fix what's wrong with us. We've been dumped in a big bucket called "MS", but our symptoms are so varied that it just never made sense to group us together and now patients are becoming educated enough to demand more effective treatment.
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Re: Patient Angst: When You Just Have To Say ‘No’ To The Doc

Postby blossom » Mon Jan 13, 2014 10:41 am

Rosegirl wrote:Unfortunately, that leaves us on our own to gamble that the next practitioner we find might fix what's wrong with us. We've been dumped in a big bucket called "MS", but our symptoms are so varied that it just never made sense to group us together and now patients are becoming educated enough to demand more effective treatment.


AMEN!
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Re: Patient Angst: When You Just Have To Say ‘No’ To The Doc

Postby Vivianne766 » Mon Jan 13, 2014 11:05 am

Brainteaser wrote:I'm not sure why this is all goodies versus baddies with ccsvi being the good guys. There are also a few ccsvi cowboys out there from what I can see.

I did CCSVI with an open eye knowing that there are no side effects if there r no stents. Did i get results. Yes, some results but sadly they vanished. I've also been on drugs for 13years. No results. None for me. But why do drug companies insist on more treatment trials not cures? Could it be the billions they r making ?!
You tell me.
Or don't. I have to read other informative posts.
:wink:
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Re: Patient Angst: When You Just Have To Say ‘No’ To The Doc

Postby Brainteaser » Wed Jan 15, 2014 7:28 pm

Hi Vivianne,

Rather than getting side-tracked about drug companies, we should be asking why your ccsvi treatment didn't turn out.
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