Recently Diagnosed - Still unsure which route to take

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
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patientx
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Post by patientx » Mon Aug 09, 2010 11:58 am

In defense of Lyon and Scorpion, I think the point they were trying to make, is to be discerning. It sounds like Mirry is pretty savvy, but many times a person (especially someone newly diagnosed) doesn't know what to believe, and will be ready to take the most convenient answer, especially when it means avoiding giving yourself a shot (I'm not saying that is the case here, or at thisisms in general, but I have seen it on other websites). I try to remember what is was like just being diagnosed (or going through the diagnosis process), especially for MS, where there is so much information, but little is really known.

And I'm not sure it's the best thing for someone just hearing that he or she has MS to immediately dive into CCSVI. Most will acknowledge this is still relatively new, and filled with much controversy. It can be difficult to follow even for those who have been tracking it for a year and a half.

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jimmylegs
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Post by jimmylegs » Mon Aug 09, 2010 12:18 pm

give me a break. our members deserve more credit.
the stickies titles alone convey pros and cons.

Announcement: moderation
Announcement: Newbies Please Visit here first
Sticky: making CCSVI charitable contributions
Sticky: youtube pre and post procedure / testimonial videos
Sticky: Post if CCSVI treatment did NOT work for you
Sticky: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Sticky: Who are the BIG names in CCSVI ?
Sticky: list of all trials
Sticky: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-
Sticky: Dr. Sclafani's Thread Index (Pages 1-199)
Sticky: Francophones: suivis des traitements du CCSVI
Sticky: Known Risks/Complications of Angioplasty and Venous Stenting
Sticky: CCSVI RESEARCH here
Sticky: CCSVI- Glossary
Sticky: SCHEDA CCSVI
Sticky: CCSVI- just the facts, ma'am
Last edited by jimmylegs on Mon Aug 09, 2010 12:51 pm, edited 1 time in total.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Lyon
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Post by Lyon » Mon Aug 09, 2010 12:27 pm

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Last edited by Lyon on Sun Nov 20, 2011 6:04 pm, edited 1 time in total.

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jimmylegs
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Post by jimmylegs » Mon Aug 09, 2010 12:52 pm

what?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Lyon
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Post by Lyon » Mon Aug 09, 2010 1:08 pm

.
Last edited by Lyon on Sun Nov 20, 2011 6:01 pm, edited 1 time in total.

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jimmylegs
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Post by jimmylegs » Mon Aug 09, 2010 1:13 pm

i've had enough of this lyon. good bye.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Lyon
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Post by Lyon » Mon Aug 09, 2010 1:19 pm

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Last edited by Lyon on Sun Nov 20, 2011 6:01 pm, edited 1 time in total.

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scorpion
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Post by scorpion » Mon Aug 09, 2010 3:52 pm

I have had know idea what has been going on since this whole CCSVI thing broke. I have been a part of this forum for over a year and a half and until CCSVI came along I would have good civil conversations with other members. Ever since my first post, when i questioned the scientific validity of Zamboni's original study, I can not say anything without it being labeled inflammatory. On the CCSVI forum neuros are called SOB's, people who right articles critical of CCSVI are referred to as idiots, and anyone who did not receive benefits from the treatment are basically kicked to the curb. It seems what has slowly been happening on this site is there is less and less room for any dissent from what the majority believes. Jimmylegs I am sure your statement telling Lyon and I to "can it" was very popular among some of the members here but for the record I have never called anyone a name or told them to keep quiet. I am truly sad with what has happened to this site.

AlmostClever
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Post by AlmostClever » Mon Aug 09, 2010 4:34 pm

Mirry,

Welcome to TIMS!


If I had to do it all over again...

I would start Copaxone and get LDN if my nuero would prescribe it for me.

I would build a daily regimen of supplements. (See Regimens section)

I would exercise all I could.

Also, I would get on a list for CCSVI testing/treatment. (Check the Hubbard Foundation in Cal since you are somewhat close). If CCSVI pans out, you want to be at the front of the line.


Good Luck and God Bless your husband!

A/C

oops - don't forget diet
Last edited by AlmostClever on Mon Aug 09, 2010 5:32 pm, edited 1 time in total.
If you can't explain it simply, you don't understand it well enough. - Al Einstein

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jimmylegs
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Post by jimmylegs » Mon Aug 09, 2010 4:54 pm

scorpion, i am not a ccsvi fanatic. and i am not an anti-ccsvi fanatic. i am a moderator.

i invited mirry to read ccsvi to stay up with the current news. reading our forums will inform re the array of viewpoints involved.

in the same vein, reading about supplements will inform them of the various approaches out there, even though i don't personally agree with all the nutrition concepts out there.

if there's one thing i've learned in my years as a TIMS member, is that people will only listen to you if they want to. arguing with people that are passionate about ccsvi is a waste of your valuable energy. the skeptics don't argue with you, because they agree and don't feel a need to post on the subject.

you'll notice, i hope, that you don't find me arguing with you about CCSVI. i'm just tired of the nastiness.

in my view you are carrying forward old arguments with established members into new territory with an unsuspecting new member. doing so is unworthy of you.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Mirry
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Recently Diagnosed - Still unsure which route to take

Post by Mirry » Mon Aug 09, 2010 7:23 pm

Jimmylegs, until you mentioned to me CCSVI, I had never heard of this so I just wanted to thank you for providing me with more topics to research and try and understand and allow me to make my own conclusions on the subject without any persuasions either way.

Everyone's journey with MS is different and I still believe that the best place to go for advice, guidance and opinions, is those that live with this day to day. I don't have to follow or act upon what information I am given but to know that I can learn so much from those already dealing with MS such as yourself is half the battle in making informed decisions that will benefit my specific case.

I really appreciate you pointing me in various directions so I can get a better understanding of all my options before I make any decisions. When you are provided with guidance like this, it is invaluable, so once again thank you.

Well, my blood tests are booked for the 20th and now I am intrigued as to what they will show. How can I be so excited over a blood test, I am not sure, but I am.... I can't believe I didn't think of that, I take bloods all day long. It may be on the four legged variety but still their make up is so very similar to ours and we test for many similar things.

Have a good evening and i'm off to read up on the topics you sent me.

Mirry

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jimmylegs
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Post by jimmylegs » Tue Aug 10, 2010 4:17 am

you're very welcome mirry, happy reading :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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