My regimen(s)

Tell us what you are using to treat your MS-- and how you are doing.

Postby SarahLonglands » Sun Aug 13, 2006 3:29 am

Which mountain range are you climbing? I ask this because the Himalayas are still rising.

Incidentally, the toes on both my feet curl upwards when I do that, either along the side or the underside, the right foot much more than the left. However, my right foot used to jump out of my hand just by looking at it. At least now I can cut my toenails without stabbing myself in the face.

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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Postby CureOrBust » Sun Aug 13, 2006 4:30 am

All I know is that I am starting to gasp for oxygen, no, literally, it's starting to become an aerobic workout now. It's at almost 8 minutes at the hardest setting (going in reverse).

I tried again this morning ... and just now ... and for the most part I could not get my plantar reflex to curl my toes up!! they did sometimes have a flick up after curling down. I think this will REALLY impress my GP if this continues to improve like this.

This improvement may imply healing in my cerebellum, damage which would be an explanation for my ataxia. However, this is still a major problem.

Had your doctors ever tried the plantar reflex previously? I am sure I read something about it when I was first diagnosed with MS.

And its only on my right foot that it went the wrong way. In the doctors sugery, i think the toes on my left foot hardly moved at all, either way.
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Postby SarahLonglands » Sun Aug 13, 2006 5:10 am

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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Postby CureOrBust » Sun Aug 20, 2006 4:12 am

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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Postby CureOrBust » Sun Aug 20, 2006 4:14 am

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

Image
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Postby SarahLonglands » Sun Aug 20, 2006 4:57 am

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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Postby CureOrBust » Sun Aug 20, 2006 5:02 am

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.
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Postby SarahLonglands » Sun Aug 20, 2006 5:49 am

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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Postby CureOrBust » Mon Aug 21, 2006 4:10 am

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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Postby CureOrBust » Thu Aug 24, 2006 3:57 am

and another point.
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Postby CureOrBust » Mon Aug 28, 2006 4:30 am

and another point. be sure to refresh the page to get latest.
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Postby gibbledygook » Mon Aug 28, 2006 6:25 am

Wow!!!
8)
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Postby SarahLonglands » Mon Aug 28, 2006 3:04 pm

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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Postby CureOrBust » Tue Aug 29, 2006 12:53 am

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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Postby CureOrBust » Mon Sep 04, 2006 5:02 am

and another point
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