Anyone have experience with alternative treatments of MS, etc.?

[philb]

A report of a small pilot study has indicated that massage therapy offers appreciable benefits for MS patients. Twelve patients (8 female and 4 male) all with diagnosed MS participated in the study in which participants were given a 25 minute back and leg oil massage given by qualified massage therapists. Each treatment began with effleurage (rhythmic stroking) which was followed by petrissage (kneading) and then ended with light effleurage.
Mood states including tension, depression, anger, fatigue and vigour were recorded pre- and post treatment using a modified Profile of Mood States (POMS) questionnaire. The participants were also asked to summarise their own subjective perception of the benefits of the massage treatment in a one-word answer. Immunological effects were monitored by taking a saliva sample pre- and post treatment which was immediately frozen to eliminate any reaction of the protein and later analysed.
The results showed that significant beneficial changes occurred in the patients mood states after massage therapy, and more interestingly, patients with negative mood states prior to treatment showed noticeable improvements in their immune functioning after the massage treatment.
The researchers noted that their results support their hypothesis that massage "would produce a more positive mood state with MS sufferers" and that it "would promote positive immune modulation in those clients".
Although a very small scale study which had no control group (indicating that any conclusions should be drawn with great caution), this piece of research does support earlier research findings that massage appears to offer psychological benefits by reducing the negative mood states of tension and fatigue, whilst maintaining a high level of vigour and a positive mood state. Further research will no doubt be forthcoming, but in the meantime, massage therapy may be considered a useful complementary therapy for MS patients.
Graydon J, McKee N. Massage as therapy in multiple sclerosis. JACM July 1997 27-28.

[philb]

1. Reflexology & Multiple Sclerosis

Reflexology & Multiple Sclerosis

Following a number of reports by reflexologists of MS patients benefiting from reflexology treatment, a small scale study was initiated backed by the Grampian branch of the Charity Action and Research for Multiple Sclerosis (GARMS) and the Scottish Institute of Reflexology.
GARMS provides regular hyperbaric oxygen therapy and physiotherapy for people with MS, and volunteers were asked to participate in reflexology study. Fourteen were assigned to a treatment group to receive a one hour reflexology treatment every week, and 13 patients were selected to act as a control group (one member dropped out leaving twelve who completed the study in the control group)
At the commencement of the study, participants were asked to asses nineteen of the most common symptoms as either minor, major or not applicable. The assessment was repeated after 6 weeks and 12 weeks when the participants also noted whether their symptoms had improved, worsened or not changed. The control were assessed using the same form at the same intervals as the treatment group, and both the treatment and control groups were asked at the time of the assessment whether on not their medication or diet had changed to assess possible external factors.
After 6 weeks, a significant number of people in the treatment group showed an improvement in their symptoms, and most of these improvements were maintained. During the second 6 week period, however, many of the participants had lost some of the improvements they had gained in the first 6 weeks; but after 18 weeks, the results revealed that those patients in the treatment group experienced some improvements in 45% of the symptoms compared to a much lower rate of 13% in the control group.
The results indicate that reflexology does offer some therapeutic benefit to MS patients especially in the first 6 weeks of treatment, although the treatment sessions need to be regular, and the benefits seem to diminish after twelve weeks.
Joyce M, Richardson R. Reflexology helps multiple sclerosis. JACM July 1997 10-12

[philb]

2. Curry Spice May Fight Multiple Sclerosis

Curry Spice May Fight Multiple Sclerosis

Preliminary studies in mice suggest that curcumin, a compound found in the curry spice turmeric, may block the progression of multiple sclerosis. According to researcher Dr. Chandramohan Natarajan of Vanderbilt University in mice with an MS-like illness showed little or no signs of disease symptoms after being injected with curcumin, while animals without the treatment went on to severe paralysis.
Interest in the potential neuroprotective properties of curcumin rose after studies found very low levels of neurological diseases such as Alzheimer's in elderly Indian populations. Added to this were studies confirming curcumin as a potent anti-inflammatory agent, effective in wound healing. And just last fall, researchers at the University of California, Los Angeles reported that curcumin appeared to slow the progression of Alzheimer's in mice.
In their 30-day study, Natarajan and co-researcher Dr. John Bright gave injections of 50- and 100-microgram doses of curcumin, three times per week, to a group of mice bred to develop a disease called experimental autoimmune encephalomyelitis (EAE) -- an autoimmune condition used by researchers as a model for multiple sclerosis because it also results in the slow erosion of myelin. They then watched the mice for signs of MS-like neurological impairment.
By day 15, mice who had not received curcumin developed EAE to such an extent that they displayed complete paralysis of both hind limbs. In contrast, mice given the 50-microgram dose of the curry compound showed only minor symptoms, such as a temporarily stiff tail. And mice given the 100-microgram dose appeared completely unimpaired throughout the 30 days of the study.

[Warpy]

3. Use it as an adjunct to your primary therapy, not as a replacement

Complementary medicine can help you feel the best you can but it doesn't take the place of all the obnoxious standard medicine that is treating the underlying disease.

The only caveat with complementary medicine comes when you run into those practitioners who tell you to stop your medical treatment. When you find one of those, run like hell!

MS is one of the diseases that has a course of alternating worsening and remission, which means it's wide open to quackery. Explore alternative treatments and if they help you feel better, then by all means use them. Just don't make yourself sicker by going without your standard care.

[fudge stripe cookays]

5. Exactly.

Thanks Warpy.

As far as I'm concerned, Betaseron is a wonder drug. It's been doing great things for me since I started on it last summer.

I'll increase my Indian food intake and have a massage once in awhile, but I need these shots. It would be crazy to risk the degeneration and nastiness that MS causes when I have something good that fights it.

fsc

[philb]

7. What is the primary treatment that you are suggesting?

I think your suggestion is the control group in these studies. Is that correct?

[fudge stripe cookays]

10. I don't see anything about them saying the control group

was on any kind of drug.

There are four main drugs used to treat MS- Betaseron, Rebif, Copaxone, and Avonex.

Usually, most people who are diagnosed will be put on one of those four. Doctors will attempt each one until the right fit is found.

As I said, Betaseron works well for me. I don't want to risk the fact that I MIGHT not have to wear Depends in a few years or will gradually lose my ability to walk based on massage,reflexology, or curry alone.

The article itself even says "Further research will no doubt be forthcoming, but in the meantime, massage therapy may be considered a useful complementary therapy for MS patients. Complementary, meaning it is being used alongside something else to reduce symptoms and attacks.

fsc

[Warpy]

11. The study you cited specifically stated it had no control group

so I have no idea what you're talking about.

This study basically said they saw a bunch of people get massage and that the people felt better afterward.

Well who the hell wouldn't?

Use this stuff plus your standard medical care if you can afford it.

If someone tells you to forego your standard care, he's a quack. Run.

[Viva_La_Revolution]

4. Pot will have the same effects as the massage...

And it helps with the severe leg cramps my Mom gets.

We made her start smoking about 5 years ago. The meds the doc gives her for cramps work... about 30-45 minutes later. If she takes a few tokes, they are gone immediately. My bro now makes sure she has a little stash in her dugout at all times, but she only uses 2-3 per month.

Also helps with general stress, probably why the massage works too.
The less stressed she is, the less symptoms she has.

[philb]

8. Not exactly, but they might be complimentary

[LA lady]

6. Thanks

Well, any thing that reduces stress will benefit those of us with MS. The idea of stripping down for a massage is pretty stressful to me!!!

I'll stick with my Avonex right now, can't stand to smoke so that really isn't an option.
Always like to read new ideas tho

[fed-up]

9. My sis slowly reduced her meds and changed her diet over 1 year & went

from barely being able to hobble from bedroom to bathroom, to doing a 5 mile round trip walk to the top of a Mayan temple. The med reduction/elimination was done with doctor supervision. She had been on Beta Seron and numerous other drugs one of which was backlofin (sp?). The backlofin was replaced by green leafy medication. The doctor over the previous years had been adding more and more meds as each would create side effects which had to then be medicated. She had gone from relapsing, remitting to chronic progressive over the course of 20 years.

The wonderful diet (mostly rice and beans) that living on disability/food bank allowed her to eat was one of the things which I believe helped her to enter remission again.

She moved out of this country a year ago and is continuing her diet of rice and beans, and beans and rice, with all fresh fruits and vegetables and some unprocessed chicken thrown in for good measure.

I understand that everybody is different, I just wanted to relay one success story.

edited to add that she also has had success with chiropractic care and massages and that some of what she thought were MS symptoms were really being out of alignment.

[BuddhaGirl]

12. CoQ10

I have read of M.S. patients who have found some benefit from CoQ10. I know one patient who takes around 1200 milligrams a day and has found some relief.

[CountAllVotes]

13. you might care to check out this site

Plenty to be said here:

Lots of links to books, treatments like diet and relaxation, chiropractic relief
and a very critical opinion of the drugs being used which are in McFox's opinion nothing more than "experimental" (read the editorial).

Info. under "MS News":

>> A recent study of 81 cases, published in the Journal of Vertebral Subluxation Research (www.jvsr.com), is the first to show that correction of upper neck injuries may reverse the progression of both Multiple Sclerosis (MS) and Parkinson’s disease (PD).
The research was performed by Erin Elster, D.C., an Upper Cervical Chiropractor in Boulder, Colorado, who compiled data from 44 MS patients and 37 PD patients treated over the past five years.

"Each patient was examined and cared for in the private practice of Erin Elster in an uncontrolled, non-randomized environment over a five-year period."

After treating upper neck injuries in 81 patients, 91% of MS patients and 92% of PD patients improved, suggesting that correction of neck injuries stimulated a reversal of MS and PD. <<

Much more here:

http://www.themcfox.com/multiple-sclerosis/index.html

:dem: :kick:

[philb]

14. I hear that Mannatech Ambrotose is in FDA clinical trials for MS

but maybe its just in clinical trials for health conditions in general and has been seen to help MS.
There are a lot of testimonials of people who have significantly improved using Ambrotose,etc.
Some info at www.glycoscience.com