Alternative Medicine?

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JackM

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Jul 27, 2007
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PALS
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CA
Hi All,
This is my first post on the site. My father is 74 and in the past two years has lost most mobility in his legs. After many many doctor visits, tests, MRIs, lumbar punctures, etc, the doctor's are saying they have ruled out pretty much everything except PLS.. (although they haven't committed to saying it is PLS either).

I will hope to be an active member of this forum, so for my first question, has anyone attempted any alternative medicines to help with PLS or it's symptoms? My father wants to undergo accupuncture and vitamin B12 complex injections.. has anybody tried those? Or any thing else for that matter, other than standard pharmaceutical drugs?

Thanks in advance
 

CindyM

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Learn about ALS
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New England
Hello Jack. Welcome to the forum. I also asked the question about acupuncture a while back and several members responded that massage helps. I was interested because, although MND is not curable, I was looking for relief from symptoms. I bet you want to help make you Dad more comfortable, too. Hopefully some of our more experienced members will have some tips, but from searching the past threads, rest, massage, and memory foam to relieve pressure points seems to be what works. Regards, Cindy

Oh, I forgot, one of the threads talks about the various vitamins that people take. Try a search from the tab at the top of this screen.
 

patricia1

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Joined
Sep 18, 2006
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PALS
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7/1999
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newjersey
JackM said:
Hi All,
This is my first post on the site. My father is 74 and in the past two years has lost most mobility in his legs. After many many doctor visits, tests, MRIs, lumbar punctures, etc, the doctor's are saying they have ruled out pretty much everything except PLS.. (although they haven't committed to saying it is PLS either).

I will hope to be an active member of this forum, so for my first question, has anyone attempted any alternative medicines to help with PLS or it's symptoms? My father wants to undergo accupuncture and vitamin B12 complex injections.. has anybody tried those? Or any thing else for that matter, other than standard pharmaceutical drugs?

Thanks in advance
Hi I tried both and they dont work The B 12 may give him alittle enery but it doesnt last. Also accupuncture is of no use Just alot of money Good luck pat
 

manfred pungartnik

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Jul 8, 2007
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7
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PALS
Country
CA
State
quebec
alternative medicine

Hi Jack M., I have posted this info on other sites before ( I also know not everyone agrees with me ) as for specific alternate medical proceedures,there are sites that refer to them but I'm not sure that any have been proven to be reliable (stem cell research is still a long way from showing any conclusive results that could be applied to humans.)Ther is also "live cell " transplants ,but these too have as many questions as possibilities...there are others but they're not worth mentioning.I have (and still do on a daily basis) researched many sites ,and trial papers on mnd's,since my daughter was diagnosed with pma..(this after several misdiagnosis...with this condition,nothing is ever concrete in terms of diagnosis.)I research everything and anything that even remotely touches on any of the M.N.D. conditions.Most of the research papers posted on the net always make reference in closing to oxidative stress on the cell structures.Mitochondrial oxidative stress has been shown to cause neuron degeneration(mitochondrial lstress...and/or damage has been shown to cause certain kinds of cancers...as well as many other diseases)So without running the gauntlet of all that I have researched...I've come to (perhaps a simplistic one)the the conclusion that some if not all of the mnd's have oxidative stress (free-radical)causitive issues(excessive glutamate (which the cells produce and need) has also been shown to be causitive in neuron decay)Research seems to be flowing back and forth between anti-oxidant on one side and genetic issues on the other and I feel that somewhere in ther lies a solution...I don't expect to see a CURE any time soon but something to either stop or retard the progression of mnd's.In the mean time until some one comes up with something tangible in this area...I can only tell you what my daughter is doing...She was put on rilutek,Vitamin E and an antibiotic that seems to have helpfull side effects.in conjunction with these she is also taking the following anti-oxidants,alpha lipoic acid,acetyl-l-carnitne,Coq10,and Vitamin -C...(there are many other strong and useful anti-oxidants which you can research)Since taking these ,my daughter has gained weight,has a much better complexion..she actually has regained some of her muscle tone in her right forearem...basically she has gotten better.Her endurance is also,phenominal..we just came back from a ten day tour of disney world where she spent everyday in it's entirety on the go.(she did have to use the prosthesis they gave her for her right foot,due to her "foot drop".So I'm not pushing anti-oxidants or any other product just saying what seems to be working for my daughter..she is physically,mentally and spiritually strong so I'm sure that helps too!So if it works for someone else, great! If not then don't stop looking until you find what works for you.!If anyone is using something that works for them they should share this info in case it could help some one out there.hope this helps,Manfred
 

MtPockets

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Jun 1, 2006
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1,528
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05/2006
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Ms
Hi Jack,

I tried the acupuncture for about 3 months and it did nothing for me at all. The only other medicine over the counter I have used that seems to help some with the spasms is Quinine. For some reason it helps make them less violent and less frequent.

God Bless
Capt AL
 

KateO

Active member
Joined
Jul 11, 2007
Messages
53
Reason
PALS
Country
US
State
Montana
I didn't benefit from acupuncture either. However, I LOVE massage. Of course, it only helps with the symptoms. "Thai massage" is great. The practitioner actually stretches your body for you. Something that feels good to me as I'm unable to stretch the way I used to.

I don't take any vitamins or supplements. I just hate taking the 9 Baclofen pills each day as well as an antidepressant. I'm just not interested in taking any more pills. Also, it just doesn't seem like a good way to spend money. I'd rather spend that money on good, healthy food and monthly massages.
 

Al

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Joined
May 25, 2004
Messages
7,960
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PALS
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10/2003
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They do have good information but after joining my spam went through the roof. Coincidence? Who knows but make sure your filters are set on high.
AL.
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
I have had PLS for years

FOr me these things have helped although they haven't slowed the progression they do help with the spasms, cramps, pain and overall health.

Watch movies that make me laugh.

Hot soaks in the tub before bed and even some times during the day with lavender essential oil and once in a while epsom salts. There are lifts to help get your dad in and out of the tub. Ask your Physical Therapist or Doctor.

Hot water bottles on my lower back and legs AND then

STRETCHING and staying flexible is VERY important! MY PT and OT have shared because we have kept me stretched and taken the hot soaks, it has helped keep me mobile. Some I can do myself and most I need help with. The Physical Therapist showed my husband how to work my legs through the cramps and spasms. Sometimes it works and sometimes it doesn't. Most things they said we have been right on for the past 11 years. The spasms and cramps can be like tsunami's if I stay on my feet for long or if I get over tired. My whole body can go into these now.

I do take 5 milligrams of milligrams every 6-7 hours. ( just succumbed to this a month ago) Some people it helps and some it doesn't. For me, it helps.

Soluble Quinine

400 milligrams of CoQ 10

Essential Fatty Acids

A non dairy protein powder made with chick peas full of B complex

I try to eat healthy but some times the chewing increases the spams in my face so the protein powder with a good greens supplement helps.

If I get phloem....Coke helps.

I use an electric 4 wheel scooter. Some times my hands get tired using it but it sure helps with conserving energy. My legs are about shot now. I can stand for a picture or hobble around for short periods but that's about it.

I now have lower motor neuron involvement showing up on an EMG. My progression was very fast for the last 6 months and now has plateaued. So, I take every day as it comes.

Meditation helps. FOr me, I am a believer in Jesus CHrist so I meditate on scripture or heaven or places and people I love. I think about bringing the breath of life into my body and then release the tension....very slowly....

Something that helps with sleep is lowering the lights in the house 1/2 hour before bed and no TV for 1/2 hour before bed. Then when I lay down tell the Lord what I'm grateful for, Thank my body for what it can do, close my eyes, tell my brain it's time to go to sleep and start to count from 100 backwards. It helps shut my brain off for the night.

So there you have it.

I also enjoy a good dark chocolate, chocolate cake or as Captain Al has suggested.....those Moon Pies!


All the best!

Frizzel:-D
 

brooksea

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Other
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HM
Hey AL I haven't had the spam problem with that site.:?:
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
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US
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NY
Me neither, but my filters are always set on high.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
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On
I have to use moderate settings due to the amount of mail I get from forum people and others. Hazards of the business I guess.
AL.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
Alternative Meds

Jack i hope you get this I used alot of supplements when i first got this . I use Mega doses of CO Q10 Niacin Fish Oils ,But one that really seemed to help was a neighbor of mine was a weight lifter and suggested Powdered Creatine again Mega doses . but then found out that if your muscle tissue is deteriorating it will show in a CK test Creatinine Kinase .( i had no muscle tissue loss showing in test) and decided to stop also i was having the expense to take MEGA doses ,which is needed to see much change . I would say have him eat alot of fruits and veggies and go lite on heavy foods that have alot of Fat .I dont eat eggs and bacon but once a year now maybe twice . I have to eat a lite breakfast or i get stomach problems . In most PLSrs you dont have Muscle atrophy, just stiff muscles cramps and spasms as only the UPPER MOTOR NEURONS are affected . After 5 years you are suppose to be out of the woods (so they say ) My X neighbor was a weight lifter body builder and if he ate a steak he would go in the gym and get it off right away . So lean is best .Geo
 
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