This Is MS Multiple Sclerosis Community: Knowledge & Support

[VailKin]

Am wondering if those who have been "liberated" had RLS and if so, was it relieved by the stenting and/or ballooning? I recently found an article about RLS at the Movement Disorders Virtual Library that identifies "vascular insufficiency" as a differential dx for RLS.

I know that many of us have RLS although I have rarely found studies that indicate RLS as a component of MS (except in McAlpine). Any comments and/or thoughts on the role of CCSVI in RLS?

Thanks,
VailKin

[mangio]

I have RLS also. Someone e-mailed me the other day stating the best
part of Liberation was that his RLS is gone. He had
the procedure in Cuba. I've read on some RLS organization sites of quite
a number of really interesting new/old therapies and am planning
on trying them first. Sclerotherapy was especially noted.

The person I am corresponding with interestingly has fairly
minimum EDSS considering the time he as been diagnosed
with MS. I think in a good twist maybe iron is
metabolized a bit differently in the brain with this condition to
our advantage. By the way the pharma drugs did not give him
much relief but definitely the liberation procedure did - his words.


He also had a very severe blistering MRV that has been
given to Dr. Haake and sent to Dr. Zamboni because of the
significance of it. He was told it might be presented at the
Hamilton conference. The imaging was done at F. Creek
(MRV 3T).

[PCakes]

Hi Mangio... Could you explain what you meant by 'blistering'... ? thanks much ..pcakes

[Johnson]

Hi Mangio... Could you explain what you meant by 'blistering'... ? thanks much ..pcakes

And, "RLS"... what is that?

I have had MS for 17 years, but do not suffer too much physical "disability", for me, it's mostly head stuff.

[sonia52]

Maybe Restless Legs Syndrome

[Salvatore24]

Johnson, RLS = Restless Leg Syndrome (I think?)

[mangio]

yes you all guessed right. Your legs creep and crawl all nite. It's a horrible
feeling really. 20pc of French Canadians have the condition as well
as Greek people. Some researchers think there is some common
gene from way back when. It's classified as a iron storage dysfunction
disease - in some parts of the world known by name Ekbom. I'm
blaming this one on the Romans, MS on the Celts.

[shye]

Mangio-
re: RLS you say

It's classified as a iron storage dysfunction disease

you might want to check out the treads on phlebotomy here--there is a group here with hemachromatosis (and more being discovered by the day); appears could be a case for MS as iron dysregulation disease!

[jimmylegs]

i don't think my jimmylegs were RLS exactly.. if the descriptions of RLS are spot on, i had something else. however, i have read that low iron can be a cause of RLS. also, magnesium. further, there have been connections made between low iron and low B12 in MS patients. absolutely useless n in the following abstract, but it's something:

Iron and the folate-vitamin B12-methylation pathway in multiple sclerosis
Journal Metabolic Brain Disease
Issue Volume 21, Numbers 2-3 / September, 2006
Iron and the folate-vitamin B12-methylation pathway in multiple sclerosis

Abstract Some subjects with multiple sclerosis (MS) present with low blood iron parameters. Anecdotal reports and a single patient study suggest that iron supplementation may be beneficial in these subjects. Myelin is regenerated continually, but prerequisites for this process are iron and a functional folate-vitamin B12-methylation pathway. The aim of this study was to determine iron status, folate and homocysteine in MS subjects, and to evaluate the effect on MS symptoms if deficiencies were addressed. Results: In relapsing-remitting MS subjects, serum iron concentration correlated significantly with age at diagnosis (r=0.49; p=0.008). In Caucasian female MS subjects, serum iron and ferritin concentrations were significantly lower than in matched controls. In a 6-month pilot study, 12 subjects taking a regimen of nutritional supplements designed to promote myelin regeneration, improved significantly neurologically as measured by the Kurzke EDSS (Total Score means 3.50 to 2.45, 29.9%; p=0.021). These were significantly improved (p=0.002) compared to 6 control group patients taking multivitamins (Kurzke Score increased by 13.9% from 4.83 to 5.50). Both groups had significantly reduced homocysteine concentrations at 6 months, suggesting that methylation is necessary but not sufficient for myelin regeneration.

[VailKin]

Quote: i don't think my jimmylegs were RLS exactly.. if the descriptions of RLS are spot on, i had something else.



I did mean Restless Legs Syndrome but like jimmylegs my RLS isn't exactly RLS. I have bugs crawling up and down my bones in my lower legs, lower arms and lower trunk. I also have this feeling 24/7 although it does remit occasionally. I know that low iron levels have been implicated in RLS so was wondering if it might be a CCSVI issue as well and maybe a reason to speak with a vascular dr.

My PT felt my legs this week as I was experiencing the creepy crawlies and said she could feel fasciculations (muscle twitches). I've had 2 neuros who said its' not RLS and 2 who say it is. I had my ferrous (iron?) level tested but it was normal - all my vitamin levels are normal except for D.

It sometimes drives me out of my mind and, while my physical MS disability is relatively mild, I'd be so willing to be "liberated" if it would stop this horrid feeling (and if I could get some of my cognitive function back).