Legs on fire

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

Legs on fire

Postby pklittle » Tue Aug 30, 2011 6:53 am

Does anyone know if treating CCSVI can lessen burning leg pain? My legs have been burning worse and worse over time, and it is more widespread than ever... alot worse in the left than right- now from hip to foot. Sometimes, like this morning, it is almost unbearable!
I know from reading that treatment doesn't help mobility per se, but I wonder about the horrific, chronic, burning ache???
Anyone know? Please respond if you or someone you know suffers from this, was treated, and did or did not get relief.
:cry:
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Postby bestadmom » Tue Aug 30, 2011 7:53 am

Hi Pam,

I am dealing with a form of this right now. When I move my head up, I get a shock in my left arm, and a burn down the back of my right calf. It's so bad I wake up if my head moves when I sleep.

I started going to the chiro for AO in March (see Flanagan's thread) and it all went away. I could tell when I was out of adjustment when it started again. My chiro changed the level of the block in late June and the shocks started again. I told him last week that since he made a change, the adjustments aren't holding and the shocks come fast and furious. He adjusted me last Tuesday, changed the block height again and now the burning is back to the point where it makes me cry it's so hot.

It seems like cause and effect but it might not be. I've had a boatload of stress with my parents both being hospitalized and in rehab at the same time, in Florida, and me being in CT in a wheelchair not being able to do anything, and getting my daughter ready to go to college as a freshman. My husband thinks it could be stress related.

Have you tried a chiro? Do you notice the burning being related to your position? Have you tried any meds? I had tegretol, which worked like a charm in 30 minutes, but it made me weak and I couldn't stand up. I had to stop it.

PM me if you want to talk. I'm home today because I had a miserable night's sleep last night. The sensory issues are far worse than my legs not working.

I feel your pain, although as long as I look down, I don't.

xxoo,
Michelle
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Postby dlb » Tue Aug 30, 2011 8:47 am

Wish there was some relief for you gals :(

Deb
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Postby pklittle » Tue Aug 30, 2011 5:17 pm

Bestadmom - my burning pain is not positional. It is always present. I do know what you mean by positional pain though, as I have a problematic lower back.. have had a fusion, in 2007 I think it was.
More recently, I took a bad fall in my kitchen, fell on my butt, and tore my l5-s1 disc. Now THAT created mega positional sharp pain. I am about over that I think. The burning I refer to has been present since I was diagnosed pretty much, and has grown worse and worse and spread in my left leg.
I am going to assume that ccsvi treatment does not help this in ms. I fear it is eventually going to rob me of my ability to walk, which really upsets me. I hate ms with a passion. :twisted:

dlb - thanks for your well wishes.[/b]
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Postby bestadmom » Tue Aug 30, 2011 5:38 pm

Pam,

I hate ms too. Every day is an adventure, bordering on nightmare.

By positional, I meant did the sensation come and go based on how you hold yourself? Mine only happens when my head is tipped up. I see yours is unrelenting.

I hope you can find some relief. I don't think getting ccsvi treatment helped me since I can see a cause/effect with the chiropractic.

mb
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Postby pklittle » Tue Aug 30, 2011 7:06 pm

I realized what you meant by positional. Bending/twisting my head every which way does not impact the pain.
I don't really want to start with the chiropractor, been there, done that.. but I may anyway since I am running out of options. I am going to start back exercises though. My back doctor advised this recently.
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Postby David1949 » Tue Aug 30, 2011 8:51 pm

Maybe she was referring to an Upper Cervical Chiropractor. Unlike traditional Chiros, Upper cervical chiros do not bend, twist, or wrench your back. They have you lay on your side with your head supported by a padded block. Then they gently press on your neck. There is no pain. I went to one for about 2 months. The treatment seemed to greatly improve the leg twitching I get at night, but did not improve my drop foot. I haven't seen her for about 6 months now but the leg twitch benefit still remains.

You can locate a nearby UCC doc from this website:
http://www.nucca.org/find_doctor.php
It might be worth a try. It will probably cost about $1000. for the x-rays, other tests, and 1 to 2 months worth of adjustments.
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Postby AlmostClever » Wed Aug 31, 2011 4:55 am

pk,

When I sit in my wheelchair (which is ALL DAY) my legs and feet start to burn. I use one of those calf massage machines and the pain goes away.

Makes coldness go away also.

GL! A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby bestadmom » Wed Aug 31, 2011 10:35 am

I do go for UCC, to an AO chiro and I have a calf massager too, which helps w/freezing feet.
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Postby civickiller » Wed Aug 31, 2011 12:55 pm

bestadmom, what do you mean by change the level of the block?
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Postby bestadmom » Wed Aug 31, 2011 1:27 pm

Civickiller, have you had an ao adjustment?

The block is the hard surface you put your head on when they apply the adjustment - like a hard pillow. My dr raised it in Juky so my head is at a different angle and it changed everything, for the worse. He adjusted it down a bit last week which made it even worse than ther prior 4 weeks.
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Postby civickiller » Wed Aug 31, 2011 1:45 pm

ive had UCC adjustment, same thing?

i think he needs to rexray you or at least move the block to where it was originally

ive been doing it since dec '10. when i never felt any improvements for a few months, i got rexrayed. found out atlas position changed. completely new adjustment, few adjustments with that, atlas went back to original position so old adjustment back working.

but my thing is different. if i dont take my LDN with the adjustment, i wont feel improvements. if i forget to take the LDN after adjustment, i lose any improvements i felt
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Postby bestadmom » Wed Aug 31, 2011 1:57 pm

I agree about needing new x-rays. I'm going to see him Friday and will call tomorrow and give them the heads-up.

thx,
mb
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