My regimen(s)

Tell us what you are using to treat your MS-- and how you are doing.
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SarahLonglands
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Post by SarahLonglands »

Well, my toes had a mind of their own since, um, I can't really remember, but all of this century.It might have been something that happened gradually. I had my first MS trouble when I was 24, but it was all so mild back then, I just ignored it for the most part. I had my plantar reflex tested first by my neurologist in 2003. David has done it since, but I managed to keep it hidden from him before that, just cutting my toenails when safly locked away in a bathroom. My GP has never tested it, or an orthopaedic surgeon I saw in 2000, who wrongly diagnosed me with congenital spinal stenosis. Now my left leg either curls up but hardly at all, or curls down or hardly does anything. My right foot is more violent, but not nearly as much as before. I get David by and large to test it, because it is easier for someone else to do, but I know that I can cut my toenails on both feet without injury.

I think you will really impress your GP if this carries on, because as far as I know, the conventional theory is that once you have it you are stuck with it.

By the way, you got me worried when I started to read your first sentence about gasping for oxygen! 8O

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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CureOrBust
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Post by CureOrBust »

and another point.

I started another flagyl pulse today. I was planning on delaying the next pulse until my walking had greatly improved, but, i am a little impatient.

My plantar reflex on my right foot appears to now be a definite curl down, but my left foots plantar reflex is all but absent. But at least, not up (i dont know which is worst).

Another thing which used to bother me: when i was sitting, and layed my right leg out horizontally, then quickly snapped my foot back so the toes pointed more back, in some positions, my foot would start to vibrate violently. Now, i find it hard to find that "sweet spot", and when i do, the foot only vibrates slightly. Its a minor improvement, and not totally gone, but i'll take it.
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CureOrBust
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Post by CureOrBust »

and heres the graph, so u dont have to flip pages

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SarahLonglands
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Post by SarahLonglands »

Up is worse, and the worst of all is violently up and toes splaying out. Sometimes my right foot still behaves like this, though not nearly as violently as before, so I can hold it down to cut my toenails.

I can't quite imagine what the positon is in the third paragraph!
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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CureOrBust
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Post by CureOrBust »

Anecdote wrote:I can't quite imagine what the positon is in the third paragraph!
Imagine standing normally, then quickly raising your toes off the ground. Now imagine this foot/leg position/action, while you are sitting on the ground, with your leg in front of you.
SarahLonglands
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Post by SarahLonglands »

Right, got it now. It was as I thought, but what I didn't get was why it makes your toes point back more.

I never tried it, but have done now and I don't get any clonus, which is what the vibrating is called. I don't know whether I would have done before, but I did get some clonus on standing up for several seconds, in my thighs and up to my waist, which has now gone completely.

Incidentally, your graph is looking very impressive. Its good that you do it so regularly, so that you can show all the ups and downs.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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CureOrBust
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Post by CureOrBust »

Anecdote wrote:I never tried it, but have done now and I don't get any clonus, which is what the vibrating is called.
Now it has a name. I would of simply called it spasicity if anything, since it isnt directly from holding my foot in any position, its the quick movement that brings it on. I have hyper reflexes.

http://www.mult-sclerosis.org/clonus.html
Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state.
There is a video at http://www.harkema.ucla.edu/clonusVid.html. although hers appears easier to start, mine used to be a lot more pronounced in the amount of shaking.
Anecdote wrote:Its good that you do it so regularly, so that you can show all the ups and downs.
Personally, I think the excercise itself, helps with the recovery. Its also good to know there have been downs in the past, that I have recovered from. It makes it a little less concerning when i feel i have gone backwards.

Like now... I have just started another flagyl pulse (day 2 over), and I think my right leg limp has gotten noticably worse. This is looking to be another short pulse.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.
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CureOrBust
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Post by CureOrBust »

and another point.
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CureOrBust
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Post by CureOrBust »

and another point. be sure to refresh the page to get latest.
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gibbledygook
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Post by gibbledygook »

Wow!!!
8)
SarahLonglands
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Post by SarahLonglands »

Good grief!! :wink:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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CureOrBust
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Post by CureOrBust »

gibbledygook wrote:Wow! 8)
Anecdote wrote:Good grief!! :wink:
I have to admit, i was pretty chuffed when I plotted it.
I find it a little anoying that although i have obviously improved for this measurement, and the tingling in my feet has been fading as well; I find that my walking is pretty laboured. I have gained a limp a few months ago, and its taking its time to resolve, but is improving.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.
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CureOrBust
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Post by CureOrBust »

and another point
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jimmylegs
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clonus is a sign of spasticity

Post by jimmylegs »

hiya cool that the spasticity is decreasing. if the vibration is the same as what i had tested at the physio, each time you snap an ankle or a wrist or i've even had a doc test my leg by yanking my knee up toward my chest, there will be a series of "beats", the muscle response to the action. spastic muscles have more beats. so yes, it is called clonus, and you are right about the spasticity/hyperreflexia idea
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CureOrBust
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Post by CureOrBust »

and another point. and here is the graph, so you wont have to flip back a page. Remember to refresh the page to get the latest image.
Image
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