CCSVI and RLS and MS

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

CCSVI and RLS and MS

Postby VailKin » Sun Oct 04, 2009 8:49 am

From the NIH:
Results of the first-ever autopsy study of brains from people with restless legs syndrome (RLS) suggest that the disorder may result from inefficient processing of iron in certain brain cells. The findings provide a possible explanation for this disorder and may lead to new ways of treating the disease.

The researchers found no evidence of lost or damaged cells in the RLS brains. Instead, they found that receptors which help cells absorb iron are abnormally regulated in cells that produce the nerve-signaling chemical dopamine. The study, led by James R. Connor, Ph.D., of Penn State University College of Medicine in Hershey, Pennsylvania, was funded in part by the National Institute of Neurological Disorders and Stroke (NINDS) and appears in the August 12, 2003, issue of Neurology. *

Does this mesh somehow with the CCSVI stuff? I read somewhere that 80% of people with MS also have RLS. Can't remember where I read then and I may be off on the statistic... :?: :?:
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Postby mrhodes40 » Sun Oct 04, 2009 9:47 am

Well here's the thing. Assuming the CCSVI model here, the leaky endothelium is allowing iron into the brain cells where it causes damage and inflammation....

BUT iron is needed and processed in the brain for certain functions using certain receptors. In the case of the dopamine receptors there is an improper use of iron in RLS they think based on this one paper.

I am not sure if "improper processing" necessarily relates to "leaked in to a place it didn't belong at all"...........but I am not sure it doesn't wither!!

that is something that may come out in further research.

One cure for restless legs is to take more iron, anemic people sometimes have RLS. But there is mouse research that anemia helps MS.

so to sum up I have no idea :roll:
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Postby LR1234 » Sun Oct 04, 2009 11:00 am

I was wondering about the iron supplement thing. Purely anecdotal I felt better when taking 2 supplements with high levels of iron and I when I ate lots of meat (no grains) and Veg. I have now changed to the opposite, very small amounts of meat and iron-free supps. How many studies were done on anaemia in MS? Does anyone happen to have those studies to look at?

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Postby mrhodes40 » Sun Oct 04, 2009 11:50 am

just look on pubmed for "iron ms"
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Re: CCSVI and RLS and MS

Postby questor » Mon Oct 05, 2009 8:12 am

VailKin wrote:Does this mesh somehow with the CCSVI stuff? I read somewhere that 80% of people with MS also have RLS. Can't remember where I read then and I may be off on the statistic...


VailKin,
I'm slowly recovering from the CCSVI stent procedure at Stanford on Sept 16th. Last night was my first full night without prescription pain killers since the procedure, and I am looking forward to eventually being able to sleep on my side once again, as the neck/back stiffness and pain subside.

It is truly amazing to me that the single most unequivocable early benefit I have felt so far from this procedure is that RLS has completely vanished in my case. The last time I was troubled with it was the night before the stents were installed. RLS has been something I have been living with nightly for years now, and have used regular reflexology treaments and daily high doses of magnesium to help treat.

It's gone. Completely. This may be a side-affect of one of the meds I am currently taking, but I don't think so (plavix, coumadin, baby aspirin). The true test will be in how long this benefit lasts. But, for now, I'm luxuriating in dreams and deep-sleep. (Or, perhaps it is an unexpected benefit of sleeping solely on the back since I had the procedure. Time will tell.)

I found your post interesting, and am trying to square it with my experience. What strikes me is the speed at which the change occurred in my case. By the first night after the stents were installed, it's gone.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
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Re: CCSVI and RLS and MS

Postby Sarahbellum » Mon Oct 05, 2009 7:53 pm

questor wrote:
VailKin wrote:Does this mesh somehow with the CCSVI stuff? I read somewhere that 80% of people with MS also have RLS. Can't remember where I read then and I may be off on the statistic...


VailKin,
I'm slowly recovering from the CCSVI stent procedure at Stanford on Sept 16th. Last night was my first full night without prescription pain killers since the procedure, and I am looking forward to eventually being able to sleep on my side once again, as the neck/back stiffness and pain subside.

It is truly amazing to me that the single most unequivocable early benefit I have felt so far from this procedure is that RLS has completely vanished in my case. The last time I was troubled with it was the night before the stents were installed. RLS has been something I have been living with nightly for years now, and have used regular reflexology treaments and daily high doses of magnesium to help treat.

It's gone. Completely. This may be a side-affect of one of the meds I am currently taking, but I don't think so (plavix, coumadin, baby aspirin). The true test will be in how long this benefit lasts. But, for now, I'm luxuriating in dreams and deep-sleep. (Or, perhaps it is an unexpected benefit of sleeping solely on the back since I had the procedure. Time will tell.)

I found your post interesting, and am trying to square it with my experience. What strikes me is the speed at which the change occurred in my case. By the first night after the stents were installed, it's gone.

--Tracy


Tracy, I hope you are feeling better. I'll bet it's nice to finally get in bed and not be plagued with the maddening RLS! Did you have RLS in both legs? I have been plagued with terrible spasms in my right leg only for years. No medication works for me.
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Re: CCSVI and RLS and MS

Postby cheerleader » Mon Oct 05, 2009 8:09 pm

questor wrote:It is truly amazing to me that the single most unequivocable early benefit I have felt so far from this procedure is that RLS has completely vanished in my case. The last time I was troubled with it was the night before the stents were installed. RLS has been something I have been living with nightly for years now, and have used regular reflexology treaments and daily high doses of magnesium to help treat.

It's gone. Completely. This may be a side-affect of one of the meds I am currently taking, but I don't think so (plavix, coumadin, baby aspirin). The true test will be in how long this benefit lasts. But, for now, I'm luxuriating in dreams and deep-sleep. (Or, perhaps it is an unexpected benefit of sleeping solely on the back since I had the procedure. Time will tell.).

--Tracy


Got good news for you, Tracy- Jeff's sleep apnea and leg spasms are gone. He sleeps like a baby...now five months post op. He was never diagnosed with RLS, but his legs used to twitch/spasm during the night and he'd gasp for air and wake us both up- it's all gone. He also dreams again. We're sleeping really well.
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Re: CCSVI and RLS and MS

Postby questor » Tue Oct 06, 2009 8:58 am

Sarahbellum wrote:I'll bet it's nice to finally get in bed and not be plagued with the maddening RLS! Did you have RLS in both legs? I have been plagued with terrible spasms in my right leg only for years. No medication works for me.


Sarabellum,
Yes, I previously experienced RLS in both legs, it has been very nice to sleep without it for about a month now, I'm hoping this benefit continues indefinitely, and I'm also hoping I can soon start to sleep on my sides once again (I've been relegated to the living room couch for the last month, as I snore loudly when I sleep on my back).

I'm sorry to hear you've not found anything to help with the leg spasms, this must be maddening for you.

cheerleader wrote:He was never diagnosed with RLS, but his legs used to twitch/spasm during the night and he'd gasp for air and wake us both up- it's all gone. He also dreams again. We're sleeping really well.


Cheer,
This is so amazing, and I'm experiencing this benefit also. The "meaningful" dreams are truly an added benefit for me, after years of little dreaming, or dreams with little or no connection to myself.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
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SPMS
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Postby MaggieMae » Thu Oct 08, 2009 5:50 am

We have talked to Alex a few times and also to Dr. Dake over a week ago. Still waiting to hear back from Alex.

My husband said this procedure would be worth it to him just to get relief from the leg spasms and they aren't just at night. I find the iron topic interesting. He was told on past blood work that his iron levels were low. That is around the time when the spasms got worse. He used to take high doses of MSM for about five years which really helped. Doesn't anymore. Baclofen and all the other muscle relaxers barely help.

Should we try the iron?
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Postby mrhodes40 » Thu Oct 08, 2009 8:18 am

Hi MM, I would not try iron because it is unlikely to help his spasms and it may create iron overload unless a person is genuinely anemic. Iron should not be thrown in willy nilly, besides it can cause some real constipation!

My leg spasms also went, for the first few days they were gone (I think the anesthesia impacts them) then they were there again, then gone almost completely (probably 90% gone). I weaned off my baclofen and requip at bedtime at about 5 weeks....

There are actually a couple of types of leg movement issues in people with MS you can have restless legs and you can have flexor spasms that bug you at night. It is difficult for a doctor to tell the difference based on patient description.

Lots of normal people have restless legs and it can be impacted by magnesium, or iron or even protein intake.

Flexor spasms are not impacted by those things and they are a sign of nerve damage. People with MS who are very progressed have a LOT of flexor spasms. Any irritating thing to the leg can bring them on, let's say you whack your big toe, this will send a "ouch" signal up to the spinal cord and this will send out a message to the leg that gets messed up and the whole leg will pull up into a "marching" type of movement--involuntarily. A normal person stubbing the toe does not do that. This flexor spasm can be so strong a person can actually strain a muscle! In very progressed persons even changing position so that the muscles get stretched can result in a reflexive spasm as the muscle "objects" to being stretched. It can be difficult to move an MS patient who is wheelchair bound from the chair to the bed, it can involve many steps and the legs and arms can stiffen out dramatically making it hard to even accomplish.

Very progressed MSers who need full time care can be wracked with spasms as they try to move or change position, it can be the single reason they can no longer care for themselves. It is why the pharma offers an implantable baclofen pump: to deliver small doses of baclofen right to the spinal cord to get the medication where it is needed without as much side effect. It may result in a weaker person, but that is more manageable than a constantly spasming one.

I describe this in detail so people can see that there is a progression for people with MS: in the beginning you do not have flexor spasms, in the end you do when MS takes its natural course. As you move through time, the flexor spasms gradually evolve and become more and more a part of your life. In the early stages they are a lot like restless legs....In the end they are misery itself as spasms dominate every aspect of life.

I know from private message that Holly's spasms did not go away with her first procedure. Mine did, and I felt pretty bad that hers did not. She DID end up getting a second procedure, perhaps she would have had them go after that but no one knows, so we have at least one example of a person who did not have relief there.

I just want to make sure we are not perpetuating an idea that spasms will always go away with this procedure. We do not know that....

I am an EDSS6 Holly was wheelchair bound. :cry:

sorry to be Debbie Downer, I am trying to help :oops:
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Postby MaggieMae » Thu Oct 08, 2009 10:32 am

Then I guess my husband has flexor spasms. It definately isn't RLS. And he can get them even during the day, but night is the worse. Some days he won't get them at all and others, there is no relief. I just talked to him and asked if he gets "marching legs". He said sometimes. I remember one day I was driving him home, his leg was having spasms and he broke a piece off our car dashboard (with his uncontrolled kick). If he sits too long he also gets them. He does walk around the house, holding onto walls, furniture, etc. But, for any distance, he uses a wheelchair.

Scares me what the future holds.

Thirty-five years of hating this.
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Postby mrhodes40 » Thu Oct 08, 2009 11:54 am

his leg was having spasms and he broke a piece off our car dashboard (with his uncontrolled kick


Yes I know what you are talking about here. I have not only damaged things like dashboards but have also strained muscles and pulled a tendon in my knee--it just pulls up --or even stiffens out--and you CAN'T stop it even if you are getting hurt. it's a bummer :cry:

I have great hope though for the new research here...I believe if the disease can be stopped we can get real solutions to these things. :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby cheerleader » Thu Oct 08, 2009 12:39 pm

Marie...I just want to say how glad I am that you are here to explain flexor spasms vs. RLS and help us all get a grasp on what's going on for MS patients. Your understanding as a nurse and patient is so valuable!
I guess Jeff was in the beginning stages of flexor spasms... but no more-
MM- as a caretaker I can't even fathom how frustrating this all has been for you. Hang in there, OK?
xo,
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Postby Sharon » Thu Oct 08, 2009 1:40 pm

Marie -
Flexor spasms are not impacted by those things and they are a sign of nerve damage. People with MS who are very progressed have a LOT of flexor spasms.

Is the nerve damage in the hip or is it in the CNS? Foot drop is caused by the peroneal nerve (below the knee on the outside of the leg) not getting the message to the muscles. This is why the electrical stimulators will work to pull the foot up. If the peroneal nerve is damaged, the elec. stems would not work. So, if the nerve damage causing the flexor spasms is in the CNS, then there would be a possibility that an elec. stem could help. What do you think?
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Postby mrhodes40 » Thu Oct 08, 2009 5:38 pm

It is in the CNS, though I have read at times that MSers have periph nerve issues too.. by putting baclofen directly in the cs fluid of the spine, they are bathing the cns in a low dose of the drug. That's why baclofen pumps are so helpful....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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