Multiple Sclerosis (MS) Support Group

Please post what you find out. I was diagnosed later than the age span THEN!. I had MS for around 19 years, undiagnosed. When I was diagnosed finally, it was a 2 hour procedure in the ER, very easy to diagnose. My MS was visible enough for an quick & easy diagnosis by that time.

As a person with a later diagnosis, I consider that perhaps my declining hormone cycle finally made it visible enough to be diagnosed? Perhaps if my hormones had not been ramping down I never would have been diagnosed? Now I have told my neuro that my MS is so affected by my cycle, I would need more than 48 hours of a symptom to identify it as a relapse. A symptom would have to stay for a week or so before I would report anything. She didn't comment, I didn't expect her to. I was just telling her the way it was for me.

It is concerning to me that you post that your MS became bad AFTER your period stopped. I was counting on the fact that when my hormones finally stabilized and my period stopped altogether, my MS would settle down again? I don't like that you wrote otherwise :(....

You have must have heard the MS is growing & becoming much more common?

There are younger & younger being diagnosed with MS....the age range is growing for MS. That is true. But they are relatively few, that are younger with MS. The bulk of the growth in MS is largely from older woman getting it or finally being diagnosed with it.

I am very interested in what you find. Please post it.

I did read Suzzane Summers book on progesteron cream to get through menopause without drugs and it stops peroids. I did try that for a few months..So I would have a plan in place for menopause when it happened. That's the kind of person I am, I hate surprises & I always need to have a plan in place. A control freak, in other words.

Is that the bioidenticals you speak about? I did not have any problem with that creme and I did feel better using it. I must have been in my late 30's when I tried it. The largest problem was I needed to drive to a health food store to get it. So I stopped using it, for that reason.

It must have been about 5-10 years after that when I had the episode that diagnosed me 41. Perhaps if I had kept using it I never would have been diagnosed?

I'd also be very interested. I think I am heading into menopause or perimenopause. My MS seems worse lately.

I am planning to pursue the bio-idetical hormone plan when I need it. Not yet menopausal
but I have used progesterone cream daily as part of my alternative MS treatment because of something I read years ago. I do so many things to stay in remission that one day I will
write them all out (now in remission for 9yrs).
The only MS drug I take is LDN.

I have been reading a lot about bio-hormones. My symptoms are worse near and during my menses. I am 37...not quite at menopause, but I have suffered with endometriosis since the age of 12. Please let me know if you find relief once you are on the therapy. I live outside of the US and do not have access to this type of therapy where I live. I am planning on seeing an OBGYN who prescibes bio-hormone replacement therapy once I get back to the States for a visit. Thanks for the tip on the book.

I think the Bio-identical hormone is what Susanne Summers is using and has been for a very long time. I am looking into seeing an endocrinologist and alternative therapy because I believe that my hormones played a serious role in leading to my dx of MS. I think my hormones are comletely out of whack! Also, the meds are wreaking havoc on my body,(weight gain, insomnia, vision changes and my mood grrrr!) just to name a few. Hell, like its not enough that the disease is changing everything about me anyway...LOl

Thank you for this post Maggie222 and I look forward to the "Hormone Panel" results.

Thanks for the post! I have been diagnosed with MS for about 20 years. Every since I was in my early 30's it seemed my personality completly changed. Eventually I had to have a hysterectomy. After that I was really messed up (hormonally). My gyno had no idea (or seemed so) of why the weight gain, etc. Went to one Endogr (sorry, can't spell) and he just told me I was in the "normal range" and really didn't help either. After watching Suzanne S. on Oprah about Bioidentical Hormones I really started looking for a doctor that knew what I was talking about. I finally did and I am currently attempting to get my hormones in balance (slow process, but well worth it).

I really don't know how much it affected my MS, but it surely didn't help any...

Yes I am interested. I had my hubby go to endocrinologist and I gave him the studies on how if testoterone is low in general it increases risk of death due to all kinds of things. Then the research on how testosterone is helping some with MS do better. He called us and told my hubby in office he wil not treat MS. His testosterone was in the bottom 17% but he still would not treat. I have an appointment with different endo in early Aug as I too believe I am having hormone issues ( my period is not regular at all). If he will treat me then I am going to schedule my hubby too. I am not looking for him to be 817 at top of normal range but 550-600 midrange would be helpful.

I will post what happens..but it will be a few months out.

Best Wishes,
EP

PS www.RAMSwebsite.net click "Supporting Data" to look at estriol studies and MS.

Here is a link to a Santa Maria article about her trip with MS...

I think at my last physical my thyroid was tested, but if not I believe I will ask at my next routine Neuro appointment for my neuro to order a thyroid test.

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http://www.santamariatimes.com/art...

The endocrine system:

Consider it the body's communication system, with endocrine glands sending messengers, in the form of hormone molecules, through the bloodstream to various organs, which the hormones then act upon.

When too many or too few messengers, or hormones, are sent into the bloodstream, the body reacts to the imbalance. A recently opened clinic in Solvang that specializes in hormone research and treatment is using advanced therapies to fix those imbalances and help people feel like themselves again.

According to Kathy Simpson, research director of the Hormone Resource Center, hormone imbalances have been linked to various health problems - breast cancer, Alzheimer's disease, high blood pressure, high cholesterol and heart disease.

But, more commonly, people with hormone imbalances just don't feel good. Therefore, too often, the symptoms of hormone imbalance are brushed off as a normal part of the aging process.

Furthermore, when people do seek treatment for their imbalances, they find few fixes. Traditional hormone replacement therapy (HRT), for example, commonly prescribed for menopausal women, comes with its own risk factors and side effects that can leave patients feeling worse than when they started.

Reese Banta is one such patient. Banta underwent a radical hysterectomy 10 years ago, at age 34, because her doctor at the time suspected ovarian cancer. At the same time, lesions were found throughout her liver. HRT - often estrogen products made from horse urine and molecularly altered progesterone - was suggested for her after the hysterectomy, but her options were minimal because most HRT had adverse effects on the liver.


After reacting badly to HRT, Banta decided to stop treatment.

“I was desperate,” she said. She began trying to balance her own hormones through nutrition and natural progesterone, which is available over-the-counter. Although she thought she felt better, she had no doctor to do blood tests that could actually show her what her hormone levels were.

Dr. Barney Van Valin, the doctor on staff at the Hormone Resource Center, is well versed in traditional HRT, as he practiced traditional medicine most of his career. He admitted that he often resisted prescribing HRT because his patients didn't usually like the results.

At the urging of Simpson, who was well versed in hormone research and had scientific evidence to back up her theories on treatment, he began to prescribe “bioidenticals” to some patients, and said he quickly realized they didn't just treat the symptoms, but actually fixed the imbalances.

The hormone molecule in a bioidentical acts exactly like the molecules produced by the body, and unlike synthetic chemicals, bioidenticals function naturally in the body. Therefore, bioidenticals can be measured in the blood, so Van Valin can test where hormone levels are at any given time.

Hormone replacement therapy, on the other hand, treats symptoms of hormone imbalance, but does not actually change hormone levels.

“I've been missing the boat all this time,” Van Valin remembered thinking. That realization drove his participation at the Hormone Resource Center.

Patients like Banta begin with a pile of paperwork that documents medical history and includes a detailed symptom questionnaire. Blood tests come next. The Hormone Resource Center's tests include checking the thyroid and adrenal glands, cortisol levels and ovarian function.

“It's kind of like the old days of doing medicine,” said Van Valin of their insistence on learning everything they can about a patient's medical history and symptoms before beginning to treat the root cause with bioidenticals.

According to Simpson, hormone imbalance is possible in women or men of any age, and is increasingly prevalent in women in their 30s dealing with “perimenopause,” a term coined to describe women experiencing symptoms commonly associated with menopause - lack of libido, hot flashes, moodiness, depression or anxiety - at a young age.

“My passion in this world is to get out to women that this is not something that happens at 50,” said Simpson.

Indeed, Banta was actually introduced to the Hormone Resource Center when she took her 17-year-old daughter, Tasia, there when it opened in June.

Tasia had been taking birth control pills to regulate her periods, but the side effects of the pills were as bad as the symptoms.

“She was frantic,” said Banta.

Van Valin, who had previously been the Banta's family doctor, suggested having Tasia's hormone levels checked so they could balance them, rather than continuing to medicate with the birth control pills.

“I didn't realize they actually could really do that,” said Banta. “It completely brought her back to the happy kid she was.”

The Hormone Resource Center also treats men, who also suffer from hormone imbalances. A questionnaire geared toward them allows them to indicate whether they've had symptoms related to hormone imbalances: lowered libido, muscle tone loss, energy loss, increased pain, depression and brain fog. And Van Valin administers tests to measure testosterone, thyroid, adrenals and even estrogen and progesterone, which are also found in men.

Like women, many men believe aches and pains come as a natural part of aging.

“But really it doesn't,” said Van Valin.

“It's really, really profound in terms of quality-of-life issues,” said Simpson.

For Banta, that proved true. When Van Valin tested her, he discovered she had a severe thyroid problem, which could be related to her liver issues and could have been the reason for her surgery 10 years ago.

“It's just completely flipped my life around,” she said. “I felt like I had emerged.”

In retrospect, Banta realized she had indications of a thyroid disorder - no hair on her arms, dry skin - but she had attributed the symptoms to a normal aging process.

“I'm just really aging,” she said. “I just figured that's what's going on.”

In fact, Simpson and Van Valin have discovered that many of their patients also suffer from a malfunctioning thyroid, usually blamed on genetics or environmental factors.

Classic symptoms of low thyroid include hair loss, weight gain and even brain fog. Some researchers have linked low thyroid to children suffering from ADHD and autism.

The Hormone Resource Center gives three tests for thyroid, which makes their testing more thorough than that done by most doctors, said Simpson.

In the United States, typical estimates of the number of people with low thyroid range from 5 percent to 40 percent, said Simpson. She added that one Belgian endocrinologist estimates as high as 80 percent of all people suffer from low thyroid.

Simpson said she believes that of the people who seek treatment at the Hormone Resource Center, 80 percent have low thyroid, many of whom were previously unaware of it.

And, she said, thyroid deficiency is almost always linked to low estrogen and progesterone. The thyroid has receptors in ovaries, so when they shut down during menopause, the thyroid is affected.

Simpson's passion for the field comes from firsthand experience. A former executive in the biotech industry, she was misdiagnosed with multiple sclerosis. Simpson disagreed with the MS diagnosis and began to research, starting with the knowledge that all of her symptoms were related to the endocrine system.

She eventually discovered that she suffered from “multiple hormonal deficiencies,” not multiple sclerosis, which she then was able to control with bioidenticals. She acknowledges that her connections in the medical industry made a correct diagnosis and course of treatment possible, and today she's made it her goal to get the word out.

“I think almost every disease in the body has a root cause of endocrine system,” said Simpson. “But we're very hormone-centric here” at the Hormone Resource Center.

In addition to opening the center in June 2006, she recently published “The Perimenopause & Menopause Workbook: A Comprehensive, Personalized Guide to Hormone Health for Women,” co-authored with Dale Bredesen, chief executive officer of the Buck Institute for Age Research.

The Hormone Resource Center's specialization in hormone health and Simpson's ability to focus on research, along with their association with Bredesen and the Buck Institute, has brought patients from around California - San Francisco, Ojai, Ventura, Santa Barbara, Lompoc, Santa Maria and San Diego - to Solvang to seek treatment.

For an appointment, call the Hormone Resource Center at 693-8700. To learn more about Simpson's research and her book, visit www.hormoneresource.com.

Emily Welly can be reached at 739-2220 or e

And here is a link to purchasing the book at Amizon. com & the review that amizon identified as the most helpful...

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http://www.amazon.com/MS-Solution-...

1 of 2 people found the following review helpful:
1.0 out of 5 stars

Contradictions - Confusion, December 29, 2008
By Alana S. Riveira (Marysville, Wa. USA) - See all my reviews
(REAL NAME)
Kathryn Simpson book "The MS Solution" causes more confusion to MS patients. I have read an interview with Kathryn Simpson in the Santa Maria Times (10/16/2006) in which she states that she was misdiagnosed with MS and instead it was found she had multiple hormone deficiencies which in her books "The Perimenopause" and "Menopause Workbook" she states were the result of a genetic thyroid problem.

This contradicts what she claims in her book The "MS Solution". In "The "MS Solution" she misleads the reader to think that she has MS. I have family members that have MS and I feel that Kathryn is doing a disservice to those with MS by misleading them to believe that taking hormone therapy and thyroid and adrenal supplementation will rid them of their MS symptoms. I do believe many patients are misdiagnosed as having MS when in fact they do not and if Kathryn would have written her book in this context it would have been very beneficial for many readers, but unfortunately Kathryn's book has only contributed to the confusion.

Here is a link to her interview in the Santa Maria
Times.
http://www.santamariatimes.com/art...
Alana Riveira

Here is the webpage for the book.

http://www.themssolution.com/