I eliminated my post

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
beatms
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I eliminated my post

Post by beatms »

I eliminated my post
Last edited by beatms on Thu Aug 07, 2008 9:09 am, edited 5 times in total.
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notasperfectasyou
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Post by notasperfectasyou »

I cannot know how to find your blog with this info.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
Lyon
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Post by Lyon »

oo
Last edited by Lyon on Fri May 06, 2011 8:33 pm, edited 1 time in total.
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jimmylegs
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dave's site

Post by jimmylegs »

hi bob, i don't think he's selling anything. i've looked over his site before and i actually am right on board with a lot of the things he says. i haven't read it slowly to look in detail for a sales pitch or a link to purchase something, but i didn't recall his having a sales pitch per se, and i didn't find anything obvious at a glance today.

his reference list looks pretty good (without checking every one) although a few are obviously not peer-reviewed journal sources. out of almost 50 references, one or possibly two of them seem to have a spiritual leaning. the site has a much higher level of spiritual representation than his research. but if that's his route to his answers, power to him, i say :)
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Post by Lyon »

oo
Last edited by Lyon on Fri May 06, 2011 8:31 pm, edited 1 time in total.
robbie
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Post by robbie »

give me a break. ms will take it's course and affects everybody differently until the end of time much like all the other diseases, thers no money in cures, lets just keep taking those drugs and have lots of hope. if you feel better it's not because of what you are doing or taking it's just because the ms wants you to feel that way, as for this this guy i can't say what i think...theres nothing for ms except all the drugs that cost 20,000 a month and have a 30% chance of helping, good luck 3 in 10.... may as well thers nothing to loose..
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Post by robbie »

sorry i meant 20,000 a year i'm just a little p\o that people can take the natural course of ms and claim to have found the miracle help or even cure and profit from peoples desperation...
beatms
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I eliminated my post

Post by beatms »

I eliminated my post
Last edited by beatms on Thu Aug 07, 2008 9:09 am, edited 1 time in total.
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Arron
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Post by Arron »

title of this thread edited to remove absolutes. As of today, there are no known cures to MS (yet).
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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amelia
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Post by amelia »

There are people with MS out there that have done quite well with natural cures. Peace within yourself can't hurt either. As far as a cure or not, no one knows and probably never will. You can't say that "this" cured the MS until "this" is tested on many many people. But hey, if anyone can find what works for them, so be it. I have learned to take Dr's and researchers with a "grain of salt". Me and Gary know about Gary's disease, and to this day have not found anybody that has MS like him. There are some that are close, but not quite. As far as inner peace, I know that hate, bitterness, and depression will eat you alive given enough time.
beatms
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I eliminated my post

Post by beatms »

I eliminated my post
Last edited by beatms on Thu Aug 07, 2008 9:10 am, edited 1 time in total.
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amelia
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Post by amelia »

His would not show up on test. No test; no spinal tap, MRI, eye evoked test, nothing. Then they finally said that if it walks like a duck.... then it must be a duck. He resonded to treatments for MS. He was labeled "clinical MS". Now he does have some lesions, but very few. He also has been paralyzed from the neck or chest down, completely, too many times to count. He always got back up and lived "normal" after that. Now he walks with a cane and the MS has taken his eye sight, completely in one eye and just as well in the other eye. Fatigue was never a problem in the earlier years. Just in the past 3 years does the heat bother him some. But he can cool off and be back at it. I am talking in the heat of the summer in the southern US on a roto tiller in the garden in the noon day sun. That really blows typical MS.
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jimmylegs
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invisible ms

Post by jimmylegs »

wow that is crazy that he could be so affected and not show up on mri. my mri looks so sketchy i can't believe i only had/have sensory loss. bad enough thanks very much.

i think in the end there will never be one specific thing that fixes ms. i agree that it is highly individual.
beatms
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Post by beatms »

Amelia, that is really scary how your husband progressed so quickly, and must be really tough dealing with that emotionally.

What kind of symptoms are you dealing with Jimmy?

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jimmylegs
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long story.

Post by jimmylegs »

short answer, sensory loss up to collarbone, which really screwed up my motor control and i had to use my eyes for feedback due to no position sense.

long answer, oh i had acute ascending sensory loss up to the c6 dermatome, which meant i was numb to collarbone. my hands and fingers were the last thing to go. at one point i had some trouble with my diaphragm and taking a deep enough breath. because i couldn't feel anything, i couldn't do stuff without looking, and my motor control was secondarily affected.

at first i was laid up with the lumbar puncture postural headache or whatever they call it. i kept trying to do things at first and then gave it up and prescribed myself three days on the couch to let the puncture heal.

then i had two weeks off work (i had been teaching skiing). once i could sit up i just started reading like crazy. i was a little obsessed with my neurologist at first and felt like he was some kind of life preserver in a fierce storm. but once i started reading i got over it because he was no longer the only source of information.

then i went into the denial stage and read desperately looking for ways that this could not be ms. then i realized, what the hell ms is just a bunch of checkmarks on a list so yes fine i have it. just need to get those check marks off the list.

so, i just started trying to do stuff for myself again. first i thought oh my god i can't drive when i can't feel stuff. jeez. but i found i could. i had stopped going up and down stairs unless absolutely necessary, but i would gimp around. i had to drag my bones around and constantly felt like i just got off a trampoline and there was too much gravity.

eventually went back to work but only to help direct students to their lessons, wearing street shoes. no confidence to walk on ice in ski boots. then because my hours were so short i decided i could put the gear back on but just not ski. there's lots of intro stuff on the flats. then one day when i wasn't working i tried four runs on my own. i found i couldn't really manage the poles, and my balance felt crazy, but i did it. by march break i took on two groups for the week. i made sure i had students that were at a no ski-pole level, and were chairlift riders so i could sit often. still i dreaded the second lesson each day but they end so quickly once you get into it.

then the season was over and i ended up on sick benefits. but every now and then there would be an improvement. slowly sensation came back, but i still had a tight band around my chest. eventually that passed too, so gradually that i just realized it was gone one day and couldn't say how long it had been better. at first i couldn't grip cups or glasses or anything without putting one hand on the bottom, because i couldn't tell how tight i had it. slowly i got better. one day i passed a heavy bowl of veggies down the table with only one hand and realized hey! that was great! around that time my crappy targeting kind of got better too. i used to have to really concentrate to get my hand to something to pick it up, but now i can just pick things up without thinking like before.

my writing was atrocious and has gradually come back to pretty much its former drafting-trained 'perfection' ;)

i couldn't keep my pills cupped in my hand for a long time because if i looked away, my fingers would go wherever and i couldn't tell. that got better too.

then one day all of a sudden the hands came back in a big jump, and i found i could type with all my fingers again, and didn't need to see what i was doing. then gradually i could even type on the flatter laptop keyboard too. THEN.... i realized i could play the GUITAR again. WHEEEEEEE! not that i do play much because my hands still feel like crap except on smooth things. i bought a bunch of smooth clothes and i still can't stand towels or cloths and i pay the salon to wash my hair for me. basically what i'm left with is an annoying half numbness/half hypersensitivity in my hands. and my neck still hurts. it was a nice whiplash head smash on the snowboard that immediately preceded my attack.

now, my improvement seems to have flattened out. i think the last thing to improve was my gait. i stopped falling ahead into each step and walk relatively normally again. some days if i have been neglectful with my supplements for a few days, my leg bones get heavy again. but if i'm well behaved i feel normal except for my weird hands. maybe they'll come back in the long run. i am not gonna be pleased tho if that fall caused some permanent damage!
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