Hormones and Diet Help Relieve Woman’s MS-Related Fatigue
A woman who says her life was made miserable by fatigue caused by multiple sclerosis (MS), claims she is on the road to recovery because she has taken control of her body and is using a combination of hormones and diet.
Instead of relying on conventional treatment, she is praising hormone treatment and a new diet for making life worth living again. “I was listening to doctors, but not now,” she told me.
Lisa, whose last name I am withholding, lives in a town in upstate New York. She was a nurse before she was forced to retire because of MS and received a number of different therapies before striking out on her own.
“I was given Tysabri, which is very strong and has a risk of progressive multifocal leukoencephalopathy (PML). I have also taken Avonex (interferon beta-1a). In fact, I ‘ve been on several disease-modifying therapies over the years. I consider I have paid my dues in that arena,” she said.
“It was my experience as a nurse that led me to notice that as women with the disease became pregnant, their symptoms lessened as their hormones increased naturally. Pregnant women don’t have relapses,” she said.
“It seemed too much of a coincidence, so I thought it had to be tried. I had estriol, an estrogen, as a lotion that is absorbed through skin, while progesterone is tablet,” she said.
Taking part in life
But that’s not all, diet also has been involved.
“I have started eating an anti-inflammatory diet, no red meat, dairy products, or gluten — and all that seems to be working, too,” said Lisa.
So what did it used to be like? Lisa explained that she used to have to lie on the couch for 11 hours each day. “I had to lie virtually flat because the fatigue was so bad, but now I am sitting up and taking part in life,” she told me.
I asked Lisa about the symptoms she had experienced before her trying hormones and diet. “The fatigue was phenomenal. Just rolling over was a major exertion. Walking to the bathroom resulted in extreme fatigue, and I used to literally crawl out of the shower,” she said.
Now that Lisa is so much better, she has some strong words for MS researchers.
“Not enough attention is being given to this form of treatment; it just goes to big pharma to make more money,” she said.
But she had some conciliatory words for those who do feel existing medicines help them. “If medicine works for you great,” said Lisa, “but they’re not for everyone.”
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Phil Longford
So, no more barbecues, and get pregnant?? Easier said than done!
Shari
How much estriol are you using daily?
Lisa
Similar to what we used the precribe for menopuse, it is delivered around your menstrual cycle. The first day of bleeding is considered day one. You have neither estriol or progesterone thru day 4. On day five I get estriol 2mg/ml, one half ml days 5-14. On days 15-28 I increase to one ml. The prgesterone the research neuro ordered is 100mg days 5-28, however i have talked to a compounding pharmacist who mentioned that she often sees 75mg days 5-14and 150mg days 15-28. It works out to about the same, so so far im ok the way it was ordered. The estriol is comounded by the pharmacist and is a topical lotion. The progesterone is a pill and is taken oraly. The estriol is not covered by insurance and costs approximately $50 a month. My research shows it is NOT estrogen, which can feed breast cncer. Something i read even show it is protective against breast cancer!
Joan Quilter
I told my daughter who is bedridden with MS about your hormone regimen, and she has 3 questions I hope you don't mind answering. First, she wants to know your age (she is 39). Second, she wants to know how long you've had MS, and third, do you have any other symptoms besides MS fatigue? Thanks so much for your reply.
Lisa
Sorry, i just saw this. Im 48, have had MS 26 years, and have a bnch of other symptoms, but the extreme fatigue put me out of work 4 years ago. Im not a couch potato at all, so this is a big change. Does your daughter have fatigue? Ive been on amantadine for numerous years to help with fatigue...and as a nurse i know its anti-viral too! But that was no where near the amount of fatigue i have now. And no one knows why...hmmm, maybe theres a study! We can communicate absolutely whenever!
Lisa
I did respond to you but dont see the message now...did you get it?
Lisa Gillespie
Hi! I read a study 13 years ago about Estriol and MS just after my diagnosis. I tried Rebif. Bad idea. I started taking 8mg of Estriol daily (makes body think I'm in 3rd trimester of pregnancy) and I've beat all of the naysayer doctor predictions. I recently learned how very important anti-inflammatory foods and going gluten free are. I continue to pray others will stop "following the program", educate themselves and get off drugs that DO NOT medically prove they changet the course of someone's personal journey with MS. Our US drug companies do not want us to know about Estriol. Not just for treating MS but as a hormone for women in general. Thank you for sharing your story!!
Gail Supina
I was diagnosed with MS in 2004 during MRI to find out why the hearing in my left ear was getting worse rapidly. My hearing started getting slowly better over the next few years. Never heard of MS...everyone else in my family died of different cancers. Luckily I did not have any issues until 2009 when I started having panic/anxiety attacks that weren't attributed to MS at that time. I was prescribed Xanax 1 mg and was told to take small amounts until attacks went away. Works well to this day. Then about three years ago these escalated mostly due to excessive heat where we live and occasional stress. I still live in A/C and wait for cool weather. Then MS fatigue began where all I wanted to do was sleep all the time. I read an article of Fox News in 2015 written about a neurologist in New York who learned he had MS when he was in medical school 30 some odd years ago. He switched his major to MS Neurologist. When he couldn't stay awake in his classes he started taking Adderall and it worked! I started taking it in April. The dose is 10 mg twice a day. What a miracle it has been. My husband and I were able to travel to England and Wales for the month of August and I was fully active every day. Just thought I would share how these two meds have turned my life around and I now live a very active life with MS. This doctor practices in New Hyde Park, NY and has written a book that is now available through Amazon so I downloaded it to my kindle and read it while traveling this year. It was very helpful describing what happens with the issues I was having. I will also add that I will be 75 in November and I have a long way to go. Because these 2 meds have kept my issues under control, I haven't felt the need to start taking the stronger MS drugs available. When I was diagnosed at the Maxine Mesinger MS Clinic in 2004 in Houston, the head doctor said I was lucky to be among the 5% who would probably never be disabled by MS and apparently he was right.
I have a very patient husband who watches over me. Every evening he asks what time I want to get up. He is the early riser in our family. I usually tell him 9 am. The fatigue never disappears and I try to bribe him with all sorts of things. I leave him sticky notes near the coffee pot saying "blue pill at 10 or 11" which he luckily disregards. However after about 15 minutes he will stand over me with a "blue" pill in his hand and a glass of water. Sometimes he has to put the pill in my mouth and sit me up to drink the water he brings. It certainly helps to have a devoted partner....he is 78 and in good health. We are very fortunate to have found each other in late 2003, bonded right away, and do everything together including constant travel to Europe as much as we can.
Besides the MS I have severe spinal stenosis and arthritis which my 4 grown children have inherited. I am taking pain meds and gabapentin three times a day and just had epidural spinal injections every 4 months since last year. Maybe all of these help the MS....who will ever know. I am sure everyone knows that MS is an auto-immune disease and my oldest son, 55, was diagnosed with rheumatoid arthritis, also an auto-immune disease. My 52 year old son was diagnosed with spinal epidural lipomatosis, a rare disease the doctors in NY haven't seen in 19 years. He just had surgery at Mt. Sinai in NY today. He was losing his ability to walk rapidly. Another auto-immune disease. My 40 year old twin daughter have had severe spinal stenosis since their late 20's.
Just hope none of them inherited the MS. All of these are auto- immune diseases. I wish the best for all who have MS and hope the information about the simple meds I am taking will help someone else.
Mary
Hi Gail,
Thank you for sharing your story. I'm curious, Did your children end up having a full MS work up to find out about there different auto immune problems? I worry that my children will have MS, but I don't know if they would be given a complete workup?
Gail Supina
Hi, Mary....just saw your comment. None of my children have had MS workups. These auto immune problems have just occurred this year and they are just working through them. Unfortunately since we all have the severe spinal stenosis and arthritis, it is difficult sometimes to tell which is causing what issue. I am sure it is expensive to have a complete MS workup unless you have a great insurance program and also MS experts in your city/area. The following is the article I read about the MS doctor in NY. I also downloaded his book on my kindle and my husband is also reading it to get a better understanding of the many issues that occur with MS. http://www.foxnews.com/health/2015/09/17/how-one-neurologist-diagnosed-with-multiple-sclerosis-is-using-his-experience.html#.V0_DSLzfoqo.mailto
Elisa Piñón
Oh my god, I was literally talking about thus today. I wondered why they can't create drugs that fools our body into thinking its pregnant. I will definitely look into this. Thank you
Dee
What about testosterone? Where does this fit in? I have had a hysterectomy and ovaries removed and am trying to find the perfect balance to keep me sane and my MS in remission.
Danielle
May I ask what ms symptoms do you have after hysterectomy? I have premature menopause and strange symptoms.