CCSVI and RLS and MS

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

Postby mrhodes40 » Thu Oct 08, 2009 7:03 pm

oh, and i could imagine a stim that might help by overwhelming the signals maybe, that might hurt though :roll: I don't know really about elec. stim ways to overcome spasms..... :?: sometimes they botox a muscle so it can't spasm.... folks who get that kind of treatment usually need the spasm gone more than they need function....ergo they are very disabled persons

THAT is why this is so important.
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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Postby Sharon » Fri Oct 09, 2009 12:33 pm

folks who get that kind of treatment usually need the spasm gone more than they need function....ergo they are very disabled persons

This would be true of the baclofen pumps. I remember reading someplace that baclofen decreases the spasticity, but, it also weakens the voluntary muscle activation. Fampridine (4-AP)which is now being trialed, reduces spasticity without weakening the muscles. But with Fampridine you have the risk of seizures.

I will look for studies on elec stim and flexor spasms - don't have the time right now. It would be easy therapy if a tens unit could help.

Sharon
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Postby Sport » Fri Oct 09, 2009 3:47 pm

I take both 4-AP and baclofen. The 4-AP has a mild, but noticeable effect on the strength of my leg muscles. I wasn't aware of, nor have I noticed, the 4-AP having any effect on my spasticity.

You can get 4-AP today if you want to try it. You do not need to wait for FDA approval or be part of any trial. You just need to get an Rx from your doctor, and take it it to any compounding pharmacy.

If you are concerned about seizures, you could also take some Keppra or neurontin concurrently. I asked the pharmacist if this was reasonable, and he said that it was. I did this for a while, but I haven't in several months more due to the fact that neither neurontin nor Keppra was all that effective for my leg pain (I wasn't really concerned about seizures). I take up to 30mg/day of 4-AP and I've never had a seizure. Of course, YMMV.
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Postby euphoniaa » Sat Oct 10, 2009 6:37 am

I'm going to try to copy/paste what I wrote about RLS in another thread. This one at least mentions RLS in the title, although the discussion includes many other types of spasms. It was interesting to find out about flexor spasms, one of the few things my wayward legs must not have experienced yet. :) I have nothing to offer about how RLS relates to CCSVI, but it's all fascinating. I eagerly await the info as it unfolds. :)

I hope the info below helps someone find relief like I did. Here's the post:
*************************************

I don't have any real suggestions for med treatment, but just notes from my personal experience & research. I've had RLS off and on for many years, I've been charting my symptoms for 5 years, and keeping track of what I eat for about 1-1/2 years.

So here's my tiny bit of information. I was surprised to find out that MY RLS happens entirely in one leg, my left leg (the probable MS one) and NEVER the right leg. Or at least it has for the last 6 years. I also have several other issues in both my legs, with completely different things going on in the right and left ones. I also know that RLS is often confused with many other spasms and twitches - even by doctors.

I've posted about RLS many times in many places, but just found a great site (RLS.org) that might help inform people about it. Unlike many other spasms, RLS is pretty distinctively characterized by a creepy, crawly sensation deep within your legs. In my case, I noticed it always happens in regular patterns with a number of seconds between each jolt (I count myself to sleep that way ) A few years ago, each jolt also ended with 3-5 myoclonic kicks too. Pretty wild.

But I've also found it seems entirely related to foods, meds, supplements, etc. (confirmed at RLS.org) and since I found many of my own triggers I haven't had it for several months. My charts show it twice since June - on days I broke down and ate junk food from the machines at work. And a few twinges during the period while I was trying out a new BP med and fish oil (I have nasty reactions to Omega 3s).

Here's a great page explaining RLS and giving non-med suggestions:
http://www.rls.org/Page.aspx?pid=543

Check this out:

5. What non-drug treatments are recommended for RLS?

In addition to medications, there are other things you and your doctor can consider when trying to help you deal with RLS. These options may include:

**Checking to see if there is an underlying iron or vitamin deficiency and then possibly supplementing your diet with iron, vitamin B12 or folate.
**Looking at medications you may be taking which make RLS worse. These may include drugs used to treat high blood pressure, heart conditions, nausea, colds, allergies and depression.
**Looking at any herbal and over-the-counter medicines you may be taking to see if they could be worsening your RLS.
**Identifying habits and activities that worsen RLS symptoms.
**Looking at your diet to assure it is healthy and balanced.
**Discussing whether or not antihistamines could be contributing to your RLS.
**Eliminating your alcohol intake.
**Looking at various activities that may help you personally deal with RLS. These could include walking, stretching, taking a hot or cold bath, massaging, acupressure, or relaxation techniques.
**Attempting to keep your mind engaged with activities like discussions, needlework or video games when you have to stay seated.
**Implementing a program of good sleep habits.
**Possibly eliminating caffeine from your diet to aid in general sleep hygiene.

By arming yourself with information, you have taken the first step toward defeating RLS. However, your optimum plan requires that you work together with your healthcare provider. Some things that you can do to help eliminate or reduce the need for drugs include:

**Living a healthy lifestyle.
**Eliminating symptom-producing substances.
**Taking vitamin and mineral supplements as necessary.
**Engaging in activities which help take your mind off of RLS.
**Avoiding or eliminating foods or medicines that aggravate your symptoms.


And this is about myoclonus (in case someone wonders what that is):
http://www.ninds.nih.gov/disorders/myoc ... clonus.htm

Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby questor » Sat Oct 10, 2009 10:17 am

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.


RLS is slowly creeping back into my nights again. It's been mildly showing up in my right leg only in the last few nights. I've been able to quiet it with an ionic magnesium supplement, and the benefit lasts through the night.

Bummer.

I appreciate reading the posts about RLS and what it consists of, and the information abou myoclonic jerks, flexor spasms, etc.

I wanted to correct my early report above. This may or may not be RLS, but whatever it is, it appears to be returning in my right leg. It seems to respond to magnesium, and I've never felt the creepy/crawly tingling described by others deep inside the leg preceding the jerk.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
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Postby LR1234 » Sat Oct 10, 2009 10:23 am

It is strange with the CCSVI procedure that the first couple of weeks see great improvement and then things seem to tail off a bit. I wonder what the reasons are for this??? I hope the RLS or whatever it is eases off again for you Tracy
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Postby mrhodes40 » Sat Oct 10, 2009 10:29 am

Report on this again later Tracey for this reason: Anesthesia is stored int he fat and it takes a few days to work out, add to that any percocet you may have been taking and this may be the "cause " of immediate RLLS relief.

However in my case what happened was that the spasms came back for about a month then went away again almost completely. I am off baclofen and requip and have not had any for some 3 months now. My spasm level is about 10% of what it was totally acceptable without medications. I am not saying this *will* happen for anyone but be open to the possibility.

TO me the initial changes are possibly about medication, longer term changes about nerves and health of brain tissue because of improved circulation, basing this speculation on the model here. just MHO
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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