Marie’s Story – How I Manage My MS Symptoms

My life is full and rich. God has been good to me. Multiple Sclerosis has restricted my activities in many ways, but has enriched it far more. I have learned to appreciate the blessings of family and friendships, to be grateful for the times when I feel good, to look for the glory of God all around me, and to praise Him in the difficult times. MS slows me down enough to listen to His Word, and look for His hand in all of life. I don’t know that I would have learned those lessons without MS slowing me down.

I have spoken with many “MSers” through the years. It has been my impression that most of us are driven, goal-oriented, smart, and self-reliant achievers who are being slowed down by MS. That is my profile also. But God has changed my focus. Now I am driven to His purpose. He has changed my goals. He teaches me wisdom. I now rely on Him instead of myself, and I pray that what I achieve will be for His glory and last beyond my own lifetime. It’s a beautiful way to live.

I have learned to manage my symptoms, allowing me to live a life that is rewarding and fulfilling. Here are a few of my adaptations:

I began chiropractic treatment in the early 1980’s, after becoming frustrated with doctors prescribing pain pills and muscle relaxants. Chiropractic adjustments brought me relief. Chiropractic does not cure MS, but I believe it has allowed me to keep walking. My MS causes muscle spasms that can lock up my leg and back muscles. I see a wonderful chiropractor locally, who can adjust my back and give me instant relief. He is very knowledgeable about MS, has been a source of encouragement, and is a walking library of information about natural supplements.

Prescriptions and Supplements
Caution: I have found a combination of supplements that make my symptoms tolerable. I list them here, but I am NOT recommending any treatment for other people with MS. Please see your own health-care provider for recommendations. I purchase my supplements from labs known for purity of ingredients.

  • Low-Dose Naltrexone:  I take 4.5 mg. after 9PM at night.  This helps greatly with neuropathy.
  • Myrbetriq:  Helps with bladder control.
  • Metoprolol:  For blood pressure (My BP has been high since knee replacement surgery.)
  • Omega 3: Heart, joint, and eye health
  • Alpha Lipoic Acid: Powerful antioxident and inflammatory agent, protecting brain, liver, skin
  • VHP: Combination of Valerian, Hops, and Passionflower helps with muscle spasms
  • Vitamin D3:  Studies have shown a link between low levels of vitamin D and MS.h
  • Pain-Aid: Prevents full-blown migraine if taken at first sign of headache

Herbal supplement pills

I am not a health nut, though I would undoubtedly benefit from a much healthier approach to eating. Since the two-month battle with Candida rashes earlier this year, I am on a very restricted diet. I am careful to eat proteins and non-starchy vegetables with every meal.  I avoid all packaged foods, breads, pastas, starchy vegetables, and all forms of sugar. Temporarily, I am avoiding all fruit because it contains natural sugars.  I look forward to eating blueberries and strawberries again.  It has been a difficult diet to adjust to, but it is worth the sacrifice to be rid of the rashes.

The thing is, very few foods actually taste good to me. Foods I used to enjoy seem to have lost much of their flavor. My iodine levels are low, so I tend to salt everything.  I think I am trying to find more flavor. Basically, I eat because it’s time to eat. I am constantly thirsty because my overactive bladder is constantly taking fluids from my body. It’s a vicious cycle. I tried a couple of prescriptions but they left my mouth so dry it was hard to swallow. I drink lots of water, usually with lemon.  I allow myself one cup of black coffee in the morning.

Critical to the management of MS is the need for rest. This has been a hard-won lesson for me. Because I am goal-oriented, I tend to push myself beyond the limits of my energy. Since I am now in what is called Secondary Progressive MS, I no longer have true remission of symptoms. I must listen to my body. When I am walking in a store and my legs begin to drag, I need to get home and lie down. If I awaken with a migraine, I need to give myself permission to take Pain-Aid and go to bed. When I get tired during the day, I take a nap on my La-Z-boy. I am learning to say “no” to party requests, and to cancel activities if I don’t have the energy to attend. This is hard for me. I love to participate, to serve, and to enjoy activities. But if I push myself too far, it costs too much in terms of pain and fatigue.

Pedicure and Leg Massage
Once a month, I treat myself to a pedicure. My pedicurist is a young Chinese woman with training in acupressure. She is able to massage away the spasms in my legs, and to relieve some of the neuropathic pain. I leave feeling relaxed and pampered. How good is that!

This is an area where I fail to take care of myself adequately. Because of my low energy and my balance issues, there are few exercises that I can do safely. Water exercise is the safest and most beneficial. I have always loved the water. I feel free in the pool, because I cannot fall. Walking in the water provides gentle resistance that is good for the joints and muscles. Stretching is easier because the water supports me. But there are also drawbacks. It takes a lot of energy to get ready, drive to the pool, walk from the parking lot, get dressed in the locker room, exercise, shower, dry off, change, walk back to the car, and drive home. I also battle incontinence, so must sometimes exit the pool for the restroom. There is also a danger of bladder infection from pool and locker room exposure.

Alternative Treatments
When I lived in Alaska I had a wonderful MD who practiced alternative medicine. Under her care I benefitted from occasional high-dose vitamin IV therapy, NAET treatments for allergies, and acupuncture.  Here in Indianapolis, I see an alternative doctor who keeps track of the supplements I take.

Along with allergies to many prescription meds, I have become allergic to many scents. I use only unscented cleaning products, soaps, shampoos, lotions, and hair products. I avoid scented candles, potpourri, oils, etc. Walking past a bath product store in a mall can cause me to temporarily feel a choking sensation. If a person is wearing a strong perfume, I may need to move away. Interestingly, I can enjoy most fruit and spice scents, but floral and musky scents will cause my vocal cords to swell and my voice to go hoarse.

Natural Fibers
For some reason I don’t understand, I seem to have more energy when I wear cotton clothing. My main-stay wardrobe consists of cotton shirts and denim trouser jeans which I like because they are not tight on my legs. I like to wear layers so I can adjust to the temperature of a room. MS does not tolerate extreme heat or cold. I avoid man-made fibers which seem to drain my energy. Silky fabrics make me feel tired. Wool is itchy. Leather is heavy. Fur makes me feel claustrophobic and a bit panicked.

Household Help
Once a month, we have a housekeeping team clean our home.  They are wonderful. My home sparkles under their care.  They even clean the window blinds and ceiling fans. With the help of my husband Jim, I am able to keep up with the care of the house on the weeks in between.  The monthly professional cleaning allows me to “re-set”.

Time and Energy Saving Steps
I have learned many ways to conserve energy by planning ahead.  My kitchen, baths, closets, office, and furniture placement are all organized for efficient management.  When I have more time, I will post some of my techniques in the “Functional Living” category of this blog.)  I plan my errands ahead.  I make a list, plan the route, and even where to park and how to walk in the store.  I don’t have energy to splurge, so planning is important.  I have used a very helpful desk planner for several years.  It gives me space to plan, to journal, and to keep track of important contact information.  I also keep track of my MS symptoms.  I have often referred back to these planners when I need to recall information from previous years.

These adjustments to life can be inconvenient at times, but all in all, I enjoy an active and engaging life. We have many friends and entertain in our home often. Multiple Sclerosis is a part of my life – but it is only a part. God has been good to me, and I am grateful.

Marie’s Story – Why I Don’t Take MS Drugs

I have mentally composed several opening statements for this post, but just couldn’t seem to put my fingers to the keys. Here is why: I want to be honest about my experience with prescription drugs, but I want to make sure I do not advise anyone else about meds for Multiple Sclerosis.

Let me say at the start that I am not a qualified medical professional. I am not an expert on diagnosis or prescription medications. This post is written strictly from my personal experience, and the information applies only to my personal choices.

In the 1980’s after I was diagnosed there were three occasions when I was put on an extended courses of Prednisone. The drug was taken in doses that gradually increased, then stayed at a peak for several days before gradually decreasing to a stop. I personally could see no difference in my MS symptoms while taking the Prednisone. However, the side-effects of the drug were HATEFUL! I could not sleep, so was prescribed Halcion. I was agitated and anxious all the time. I gained weight (though the weight fell off when the drug course ended).

By the time I was put on Prednisone for the third course, I felt like I didn’t have control over my own thoughts. I wanted to jump out of my own skin. I felt angry and aggressive. I can remember my husband making some innocuous comment to me, and I charged at him, shoving his chest and pushing him backwards. All the time, I was thinking “Why am I doing this? This is not me! I can’t make myself stop!”

I vowed I would never take Prednisone again, and kept that vow for thirty years – until recently.  I had a two-month battle with  rampant Candida rashes that covered much of my body and caused my face to swell, burn, and peel.  I had to take Prednisone for three weeks.  I hate it now as much as I did thirty years ago.

I don’t recall the year, but I keenly recall an incident fairly early in my MS history that solidified my choice to avoid the MS drugs. A bout of what I thought was “flu” left me so weakened that I could not walk. I was hospitalized for a couple of days and given IV fluids for recovery. My primary care doctor referred me to a neurologist for follow-up.

I sat in a wheelchair in the neurologist’s office while she did the usual neuro tests and quizzed me on my MS history. I had to concentrate intensely to answer her questions. MS can cause what some call “brain fog”. When I have brain fog, it’s like flailing through cobwebs to make the brain focus. I heard the neurologist tell me that I HAD to begin taking Avonex, a relatively new MS drug at the time.

Something in me resisted being told I HAD to take a drug. I responded that I wanted to read about the clinical studies and side effects before taking Avonex. I vividly remember the doctor pulling herself stiffly upright in her chair, looking me straight in the eyes, and saying with great offense, “I am not a fly-by-night physician! I know what you need!” With all the pitiful strength I had, I pointed to my chest and said, “Yes, but this is MY body. I will choose after I have the facts.” I had dealt with enough doctors by that time that I was no longer intimidated by them. I needed a doctor who would work WITH me, not give ORDERS to me.

She huffily called in her nurse and instructed her to show me the information about Avonex. I sat in a chilly closet-sized room and struggled through the brain fog to read the clinical information. It was alarming to me. The side-effects of the drug scared me far worse than my MS symptoms. I opted OUT of taking Avonex.

I have since opted out of taking other MS drugs that came on the market. I decided instead to manage my symptoms. It was a risky choice to make, but has proven to be the right choice for me.

Since then there have been many drugs developed specifically for Multiple Sclerosis. I am on the mailing list for several MS organizations, so I have stayed updated over the years.Hundreds of studies have been conducted. Billions of dollars have been spent on research and formulation of these drugs. Drug companies have invested billions of advertising dollars in glossy ads.  Here are a few of the current drugs on the market.  Recently there have been newer drugs developed.


I take NONE of the standard MS drugs.  

About two years ago, I began taking Low-Dose Naltrexone, a drug that is considered “alternative” in the MS community.  I did a lot of research about LDN before approaching my primary care doctor for a prescription.  She referred me to a neurologist, who initially did not want to prescribe LDN.  However, after reading the online information I provided for her, she relented and reluctantly prescribed the drug.  Low-Dose Naltrexone must be ordered from a  compounding pharmacy.  I have had good results with LDN, especially because it relieves much of the burning neuropathic pain in my legs and feet.  Information can be found here:

I don’t know how it began, but I have developed many allergies and sensitivities to prescription drugs. It seems that once the sensitivities began, more followed. To date, I am allergic to Demerol, IV contrast dye used in CT scans, Clinoril, Dilaudid, Penicillin, Percocet, Tizanidine, Baccitracin, and Diflucan.  I am hyper-sensitive to Epinephrine and Codeine. All the statin drugs cause severe joint and muscle aches, including Zocor, Crestor, Lipitor, Zetia, Niaspan.

You can see why I don’t want to take more prescriptions. I have found several supplements and alternative treatments that help me cope with MS.

(In the next post, I will blog about Marie’s Story: How I Manage My MS Symptoms.)

For excellent information about Multiple Sclerosis and a chart about drugs used to treat MS, visit these web links: