Step One: Close the business. I had left San Francisco to get a grip on my life. O.K., the Chinese Doctor hadn’t healed me. I was determined to change my life so I could devote all my energies to healing. The first and most obvious step meant closing the perfume boutique. Running it was killing me. I knew my husband would be disappointed, even angry, but it wasn’t destroying his health and financially it was more of a drag than a benefit for us. His uncle had warned him against opening a business, considered it foolish given my husband’s profession as a civil engineer. What was he doing, why had he imposed this on me? The lease was up August 1, 1983, so I could close the shop and bow out gracefully
Step two: Gather information: My mother wasn’t given to tender sympathy, but over the year she had collected articles on MS, some she had found, some offered by friends and her mother. One newspaper article showed a young man highstepping beside a wheelchair his arm held high in victory. He had recovered his legs by taking vitamins and adopting a gluten free diet. I took the article but I didn’t believe in the “cure”. I reflected soon after reading about it that if I had to stop eating wheat I couldn’t use batter to fry my chicken. Talk about dumb. This is to say, I too resisted changing my diet and lifestyle. Being sick is bad enough, having to deny oneself culinary treats seems one misery too many. It would take another year for me to find a kinesiologist/nutritionist who could work up a personalized nutritional program. But even more importantly, he would act as a partner to goad me into healing. I didn’t read the information gathered by my mother until after my return home in San Francisco. It offended me a bit to be seen as someone with a disease. But I did digest the information, slowly.
Step three: Take nutritional supplements. That same January 1983 I took another feeble step towards healing by ordering a vitamin/mineral supplement being sold by my sister, the Neo-Life Stress Pak. Neo-Life is a multilevel marketing company (which my father derisively called a pyramid scheme), but since I didn’t know how to work up a balanced vitamin/mineral program on my own, and to help my sister, I ordered it. Not ideal, but better than nothing.
February 28, 1983 I purchased Dr. H.L. Newbold’s book MegaNutrients For Your Nerves (1975) where I found many good ideas, but I wasn’t yet ready to change my diet. Nor was I ready to embark on the Mega-doses of vitamins and minerals he recommended. The Neo-Life Stress Pak was clearly inadequate, but his ideas seemed too drastic for me to try alone. (See my blog post “MS Food” August 19, 2016). I also wasn’t ready to accept his cynical dismissal of current medical practice as “Cookbook medicine”. Personal experience had led him to understand that the American diet and lifestyle weren’t normal for human beings resulting in poor physical and mental health. I was still thinking that since the HMO was collecting money to care for my health, it was simply up to their MDs to do their job. I needed to find an MD who would seriously consider my symptoms and health history and find a solution. I seriously believed this was possible. Of course it wasn’t. More on that later.
I discovered among the material my mother had collected articles on Evening Primrose Oil. A pamphlet written by a PhD candidate discussed the virtues of Evening Primrose Oil to treat MS. I’ve lost the pamphlet so I can’t give credit to the author. The active substance GLA gamma linolenic acid, an Omega 6 fatty acid, can’t be made by the body and at the time it was believed that the only other source was mother’s breast milk. Important in activating liver function. (I wasn’t breast fed.) I didn’t try the supplement until April 1983, 3 months after first reading about it. I was so close to collapse, I feared the slightest disturbance would send me over the edge. Another magazine article in my mother’s stash recommended the supplement to treat pre-menstrual stress syndrome (PMS), a miserable condition I had developed the year before. Hmmmmmm.
On a lovely sunny spring morning that same year I was in my perfume boutique when a beautiful young woman walked in. A mass of flaming golden red hair swept back from her lovely face. She stared at me with incredible green eyes. I wanted her to stop staring at me so I could stare at her, but she may have felt the same about me so we just stood staring at one another. Suddenly she blurted out that she had PMS and had just purchased EPO to treat it. Eureka! This was the same substance recommended for MS and I too suffered from PMS.
Shortly thereafter I dreamed a white coated Doctor recommended the Evening Primrose Oil for me, that it would be good for me. This was my instinct speaking. So I began taking a 200 mg pearl 3 times a day. It took about 3 weeks for my symptoms to smooth out and become somewhat more tolerable. This was an important step in healing.
Step Four: Find a personal physician. The HMO preferred one choose a personal physician to coordinate one’s care. This wasn’t easy. Late January I was able to make an appointment with Dr. H,, the earliest opening being April 21 (3 months later). He had signed my marriage medical documents years earlier and seemed to be a civilized person (though during my appt I did notice he rather rudely dismissed a female patient on the telephone) On my return home from Seattle I began making a series of medical appointments, I was determined to get someone to study and hopefully solve my myriad health problems.
At my March 9, 1983 return visit, my Gynecologist Dr. S suggested I note my basal body temperature upon rising in the morning to see how my menstrual cycle corresponded to my symptoms since I felt that the temperature rise at ovulation triggered the MS symptoms. This was an excellent idea. I kept a daily symptoms journal in parallel to the temperature chart and came to understand the pattern of my symptoms. I kept the journal/chart from March 11, 1983 through May 3, 1984. Reading this today I am reminded of how sick and miserable I was at the age of 34, even though the MDs noted consistently that she “looks well”.
On April 21, 1983 I presented a detailed basal body temperature chart and analysis to my hoped for personal physician Dr. H. I thought we could save time and facilitate communication if I wrote up my health history accompanied by my current status. He was furious. He threw the papers back at me, telling me to describe my symptoms “in your own words”. Discouraged, I did the best I could.
The following are his notes in my medical record which reflect a respect for my paper which he didn’t display in person.
“Problems of severe pelvic pain, fever, worsening of MS symptoms, insomnia, about 2 bad weeks, then has a few good days and the cycle repeats on a monthly ‘There’s obviously a hormonal imbalance, or some infection to be found”. Interested in Prostaglandins – particularly Evening Primrose Oil of England which she thinks is used in England to treat menstrual pain and MS.
MS., frequent cystitis Rx Gantrisin – good control, Hysterectomy 1972 endometriosis, ???????, chronic constipation…
Helped by acupuncture MS onset 1980, able to dance for awhile, affects legs, some difficulty getting around, bladder problems,"
He performed a standard medical exam - blood pressure, heart/chest exam, eyes, ears etc. He wrote
"Looks well…MS Stable
The ???of her thesis is –I think- that her hormones allow a slight rise in her body temperature which triggers her MS s/s Discussed possibility that hormonal manipulation such as Progesterone would eliminate this cycle. Would appreciate endo consultation and advice. Thanks, H”
He then waved at my papers and said, “Other than these things, you are in perfect health.”
Dr. H did enter the papers and temperature chart into my file.
Below I quote part of the papers I asked him to read. I confess they were probably too long given the HMO time constraints.
- Anna Macy. Age 34. April 20,1983
Page 1 of 4 (Chart and Diary not included)
Reasons for seeking Medical Care
I have been for some time been suffering from serious health problems which include the following: Multiple Sclerosis, Endometriosis, cyclic insomnia (probably due to hormonal imbalance/pre-menstrual stress syndrome), chronic debilitating fatigue, bladder infections, lowered resistence to infection leading to frequent viral infections (colds, sore throats etc), poor blood circulation, and most recently pain and distorted vision in the Right eye.
It is my belief that the root cause of this general pattern of poor health stems from hormonal/menstrual dysfunction and endometriosis. After a brief "History" I will describe a typical monthly menstrual cycle. A Basal Body Temperature Record chart beginning March 11, 1983 then follows, accompanied by a state of health "diary"...
- 1982 - Terrible year. Endometriosis attacks so painful, generally debilitating, invaliding, that I could barely recover from one before the next one began These "attacks' impacted adversely on the MS, not only by weakening the nerves in particular, but by undermining my general health such that I was continually subject to viral infections (sore throats, colds, bladder infections). Even as MS symptoms improved, endometriosis "attacks" would set me back again...
IMPACT OF MONTHLY HORMONAL CYCLE ON MS AND GENERAL HEALTH
(Reference to Cycle no. 1, March 11 - April 8, 1983)
Around days 4-5-6 of the cycle, I enjoy 2 to 4 "good" days: minimal endometriosis pain, minimal MS symptoms, sleep reasonably well, clear headed, a general feeling of well being. (During a bad streak these days are not enjoyed because after 2 weeks of insomnia I fall ill with a virus, the ill health caused by one "attack" thus runs into the next month's breakdown.)
After these good days the endometriosis pain begins to rise again, some MS irritation is noted (minimal), as well as a general fatigue, lethargy, dizziness and nausea. I become very sluggish, sleep long hours, wake with arms and legs numb from poor circulation. As the endometriosis pain rises it affects the lower back area (always), the lower abdomen and bladder (relatively recent), and sometimes the ovaries begin to "swell" as the pain increases. As the endometriosis pain increases in intensity the following occurs:
great exhaustion and lethargy, pimples, discharge, water retention, bloated belly, constipation (alternating with diarrhea), compulsive eating, foul gas, poor circulation arms and legs
The pain and lethargy become overwhelming and seem to build to a climax. (Chart #1 see 3/24, 3/25. On 3/24 the temperature rose to 98.4, falling to 97.9 on 3/25.) On 3/25 I noticed a particularly foul smell in the urine and a great irritation to the urethra and bladder. Months past I have taken Gantrisin (sulfa drug) this one day to prevent infection. (Two months previous, the evening on which these symptoms occurred I had a waking temperature of 99.2) It is my opinion that Ovulation occurred the night of 3/24 - 3/25. The evening of 3/25 the lethargy of days previous vanished to be replaced by nervousness, "speed", and insomnia, indicating a marked change in metabolism.
This change in metabolism - lethargy followed by nervousness - marks the onset of a period of "speed" and insomnia which ends with the next change in metabolism roughly 2 weeks later.
During the next few days as the generalized endometriosis pain subsides, the ovaries become extremely painful, feeling enflamed and swollen. (During Cycle #1 the Basal Temperature ranged from 98.05 to 99.1 while the daytime temperature ranged from 99 to 99.3.)
The most serious MS flareups begin as the pain of the endometriosis "attack" peaks and the temperature rises, and they continue during the following 2 weeks...The intensity of the MS flareup generally corresponds to the intensity of the endometriosis "attack" (my note today i.e. painful CRAMPING). To make matters worse, the feeling of "speed" causes an insomnia which results in a lack of sleep and a generally rundown feeling. I take sleeping pills most of the time and even then can't sleep enough to feel rested upon waking.
Definition of "speed": A "stimulant" seems to be coursing through my veins, an adrenalin like rush. I can't relax or sleep naturally. The heartbeat seems irregular, there is a strain and tightness in the chest. After a few days I feel like tearing my heart from my chest to get some relief. After 2 weeks of nervous exhaustion without respite, I often fall ill e.g. cold, sore throat, bladder infection. Especially if accompanied by fever, this ill health further exacerbates the MS.
Towards the end of the 2 weeks of "speed", the endometriosis pain returns after a brief respite, though much less intense than the "attack" of Ovulation.
Finally, I experience another change of metabolism. As though coming off a "high", I experience a sudden depression. Insomnia gives way lethargy. I believe this change signifies a menstrual period. (My uterus had been removed 11 years previous as a treatment for endometriosis.)
During the next few days there is some endometriosis pain, some MS irritations, and, alternating with nights of very sound sleep, nights of fitful sleep, often as a result of MS induced nerve irritation. However, I don't need a sleeping pill for sleep.
If lucky I then enjoy a few good days before the next "attak" begins. MS damaged nerves appear to improve gradually up until the next endometriosis "attack" at which time they deteriorate anew." End of quoted 1983 report
HEALTH PROBLEMS IN 1983
- Hormonal Imbalance/Pre-Menstrual Stress Syndrome/Insomnia
- Possible Ovarian infection at time of Ovulation
- Multiple Sclerosis
- Bladder Infections
- General Poor Health/Fatigue/Dizziness
- Right Eye Pain (Appt. May 18, Opthalmology)
All the MDs who considered my case in 1983 suggested hormonal therapy, maybe removel of the ovaries, and more Danazol for the MS. That, of course, reflects their training, but it was all wrong.
I visited the Gynecologist Dr. S. again on April 26 who wrote
Endo and BBT chart, Very detailed chart of BBT and symptoms. Pain related to ovulation, insomnia and ‘speed’ effect tied to luteal phase. Takes B6 (200 mg day) Suggest Danazol and vaginal suppository progesterone.
May 18 I visited an opthamologist recommended by my contact lens optometrtist, a very kind lady who listened to me and suggested resources. Dr. B. didn’t feel the right eye vision distortion was MS related.
May 25 I visited Dr. E. I don’t remember him. Unhappy with Dr. H, was I trying to find a personal physician ? His summary is intelligent.
“long, complicated history, has endometriosis, past 15 (sic) years has PMS. Recently began Evening Primrose Oil used in England to treat MS and PMS. Her symptoms improved after 3 weeks. Discussed Danazol (has migraines, advised against birth control pills) Progesterone therapy? Ooophmectomy? Return 3 to 4 months.”
June 22 I visited the Gyencologist Dr. S. again. He mentions "primrose oil 40 gr linoleic acid, symptoms better, to close business, refuses BCP, PMS study."
In 1983 I was very far from solving these problems. The Evening Primrose helped smooth out the hormonal swings slightly. I closed the perfume shop August 1, 1983 and that relieved me enormously, I was being poisoned by the “fumes”. As it turned out, I did have a chronic infection, a hydrosalpinx (liquid filled fallopian tube) attached to my bladder which had been left behind after my uterus was removed in 1972. The HMO Gynecologist saw this fluid filled object in a Sonogram performed April 1980 just during my first MS attack. He didn’t tell me about it, didn’t treat it and only after my French Gynecologist discovered it on a Sonogram was it removed Feb 1997. Frankly sloppy health care which shocked my French surgeon. The ONE thing the Allopaths could have done to help me then, they didn't do.
My own analysis now of these problems is that the constant pain and infections (bladder, hydrosalpinx etc) caused my body to seize up, to cramp, which hampered blood/fluid circulation leading to MS “attacks” or ongoing symptoms. I probably didn’t have an ovarian infection, but a chronic inflammation in the pelvis/bladder area.
To jump ahead of my story, February1984, after 5 days of avoiding substances and foods the Kinesiologist had tested as negative for me, the right eye problem completely disappeared. After 6 months my intestines functioned normally, within the year the MS nerve damage had healed and the endometriosis had disappeared. Most of the above health problems more or less disappeared. The pathology was essentially one of TOXICITY and poor nutrition. Let's say each problem had been treated separately by the HMO Doctors. Prednisone for the MS, Danazol for the Endometriosis, Progesterone for the menstrual disorders, (maybe removal of the ovaries!!!!!!!) laxative for the constipation, sleeping pill for the insomnia, antibiotic for the cystitus, something to speed me up, something else to slow me down. I would have ended up even more of a basket case than I already was.
However, for the most part I can’t reproach the HMO Doctors for practicing the allopathic medicine they had studied in medical school. They could have been more respectful and tactful. I did find a solution eventually, but in alternative medical circles.
June-July 1983 I was highly stressed preparing closure of the business. I had to replace my best employee who left on vacation to France. I found a buyer for our fixtures, but the owner refused to lease to him. The clearance sale was a huge success, but I was a basket case. My foot arches “fell” so I wore running shoes to support them even though they didn’t enhance my “look”. I endured the pressure, focusing my attention on August 1, the day of liberation.
It was just now that a devil seemed to take hold of my husband. He said the most awful, hurtful things. He began to pick at me more than usual, telling me I was looking dowdy and needed to improve my wardrobe. Said I was getting too old for him (I was 34, he was 54), losing my looks, he needed to turn me in for a new model, what would I do without him. He wouldn’t leave me the space to finish up the business and recover some energy. I began to feel I like I was trying to keep up on an accelerating treadmill unable to get off.
In October I would discover the name of the Devil. Good old fashioned Sex. Though the discovery broke my heart, it also freed me. More later.
Tags: Multiple Sclerosis, Endometriosis, PreMenstrualStress Syndrome, PMS, Evening Primrose Oil, GLA, Danazol, Allopaths,