What are you doing or do you recommend to Hang in there

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

What are you doing or do you recommend to Hang in there

Postby Gordon » Mon Oct 18, 2010 3:31 pm

Can we start a thread or better yet a sticky on how to hang in there until you get Liberated.

Here are some things I would recommend

Natural blood thinners
Lots of water
Excersize

ETC
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Postby Gordon » Tue Oct 19, 2010 12:25 pm

THIS WAS PLACED HERE FOR PEOPLE TO MAKE SUGGESTIONS !!
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Postby Cece » Tue Oct 19, 2010 12:40 pm

Hi Gordon! What did you have in mind by natural blood thinners? Garlic, aspirin, that sort of thing?

I'm a fan of the green tea supplements, with the research that it's able to cross the BBB and take out iron.

Posting here at thisisms may also emotionally be a way to hang in there. :)
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Postby bruce123 » Tue Oct 19, 2010 1:08 pm

For everyone who posts here at TIMS there must be hundreds who just lurk and read. I know I was a lurker for a few months before I started to post.

This forum is a great way to keep you busy and motivated. Sometimes it's too good at keeping you busy. It can become addictive and checking the forum can become a bit of an obsession. I know I suffer from that a bit but I can't think of anything more important in my life that making the most informed decision about treatment.

Bruce.
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suggestions

Postby zinamaria » Tue Oct 19, 2010 1:34 pm

Hi all,

This is a great idea, this thread, and I would like to suggest that one does not wait on Liberation as an 'answer' as much as a piece to the complex puzzle that is MS and CCSVI..so psychologically, emotionally and spiritually keep doing all you can do (nutrition, exercise, prayer, meditation etc, what ever you do to keep yourself sane and healthy!) until you have the opportuniity to have Liberation and find out for yourself if it is helpful or not.
I try not to give in to despair when I think I woud be better with Liberation but can not yet get it done, and then think I am losing something by not getting it...on the other hand I want it done so I can know for myself its benefit, or not. Keep balanced. stay well in the mind and spirit the body will follow, is my thinking. (Wellness not necessarily being 'cured' or doing somersaults!)
It was such a joy to read Bluesky's story, for example, of her 'zombie' race in a wheelchair with her son! Like that.

I guess not putting all your eggs in one basket is another way to say it (I suppose cliches come in handy once in awhile).

Zina
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Postby jimmylegs » Tue Oct 19, 2010 4:17 pm

optimizing your nutritional status to match 'healthy controls' as opposed to a typical MS patient's nutritional profile.

key items: vit b12, vit d3, vit E, zinc, uric acid, magnesium, selenium, ferritin, hemoglobin, it goes on and on.

i find this approach has the best chance of success if all the following stars align:

1) the patient must be interested and positive, and
2) committed to taking the time to understand the various aspects of the approach.
3) the patient must also have either coverage for testing or money to pay for the tests.
4) the doctors must be willing to consider the extensive body of scientific literature on nutritional differences between MS patients and healthy controls.
5) they must also be willing to write the needed requisitions and
6) relay details of your results.

in my experience it takes everything listed above to have a real chance of success using nutrition to help treat MS.

some people come to me for help after their surgery. i'd much rather you came before, especially if your symptoms are mild.

if you're interested, please PM me.

jimmylegs
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Coping until 'Liberated'

Postby Kate_PghPA » Tue Oct 19, 2010 6:44 pm

Recommend: LDN


I've just begun Low Dose Naltrexone (LDN) 10/15/10

--my MS Hug is GONE!
--breathing easier...no 'resistance'
--better bladder/bowel function
--walking feels steadier
--more energy...not doing any marathons but I'm quite amazed...and I'm only on the 3mg./day dose...
--feel as if I HAVE Been liberated !!

see LDN section on thisISms.com for more info

Until Liberation occurs...!!! kate
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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Re: Coping until 'Liberated'

Postby 1eye » Tue Oct 19, 2010 7:00 pm

Kate_PghPA wrote:Recommend: LDN


I've just begun Low Dose Naltrexone (LDN) 10/15/10

--my MS Hug is GONE!
--breathing easier...no 'resistance'
--better bladder/bowel function
--walking feels steadier
--more energy...not doing any marathons but I'm quite amazed...and I'm only on the 3mg./day dose...
--feel as if I HAVE Been liberated !!

see LDN section on thisISms.com for more info

Until Liberation occurs...!!! kate


Don't even know that you can have grown any collaterals by now, so good. Be aware that a goal of this procedure is to make collateral veins unnecessary and unused. One of the properties of LDN is that it promotes angiogenesis, which you need to start a new vein. I guess if it works, who cares?

Myself I bought a wedge pillow in hopes that my circulation would stop depending on jugulars for anything. Don't know how well that works, but if it does, and then you get Liberated, throw away the pillow. Your freshly opened IJVs should make it unnecessary.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Tue Oct 19, 2010 7:14 pm

LDN can also help with endorphins, which somehow modulates the immune system...I prefer the CCSVI explanation, but there was an autoimmune theory version too. :)

Inclining your bed used to get a lot of talk here on the forum, but not as much lately. I love my inclined bed.
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A LAZY BOY LIKE RECLINER

Postby Gordon » Wed Oct 20, 2010 12:38 pm

I have moved off of the bed and now make a NEST in a lazyboy reliciner for sleep. I seems to help me significantly.

Gordon
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LDN

Postby Gordon » Wed Oct 20, 2010 12:42 pm

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Postby 1eye » Wed Oct 20, 2010 12:54 pm

This may be an important thread in the long run, as waiting lists become longer. What To Do Until The Catheter Comes...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Wed Oct 20, 2010 4:32 pm

Read all 244 pages of drsclafani's thread!!

Other than that, I read somewhere that since most forms of exercise require extra oxygen for the muscles, the brain doesn't get as much of an oxygen boost from them as it does from plain old walking. So treadmills, long walks, hiking, walking the dog, all good things.
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Postby 1eye » Wed Oct 20, 2010 5:43 pm

I use a recumbent elliptical that gives me as close to walking as I can get.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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A cold towel around the next

Postby Gordon » Thu Oct 21, 2010 7:00 am

THis seems to help significantly...

I wet a linen (I use a pillow cover) and put it in the freezer... As required I pull it out of the freezer, let it thaw and then drape it over my head or around my neck...

Works for me

If I remember, I will pull it out before I have a shower and then when I get it out I place it around my neck or on my head as I dress
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