Frequently Asked Questions

Eva, ARE YOU MS FREE?

UPDATE February 19, 2018.

I have been symptom free since 1991, and I am well and active. For past 2 years I have been Tai Chi instruction.

I will celebrate my 74th birthday in June 2018 and it is now 51years since diagnosis, and being told that I didn’t have long. My symptoms began at age 8, 1952. MS is a virus that has periods of activity, and periods of arrest. No one can predict when activity will occur; however, there is evidence stress is a major factor.

IS MS AFFECTED BY PREGNANCY?

 

Reader Elizabeth Colpoys writes – About the pregnancy association: I worked for the Social Security Administration in the 1970s and every woman I took a disability application from with the disability being MS had their first symptom shortly after giving birth.
Not a huge number, there were applicants with other disabilities, but of about 50 with MS being the offending condition, after child birth was the first reported symptom–every time!
Not scientific, I know, but was common knowledge among those of us who
worked there.
For me, my only child birth was 17 years after my first symptom,
but my loss of balance and proprioception came on about 4 months after my
daughter was born and has continued and worsened. My OBGYN said at the time she monitored her patients closely when our estrogen levels dropped, either after birth or discontinuance of breast feeding. Again, just an observation to pass along.

So I checked what research has offered through the years. EM

2018 … relapse occurrence during pregnancy is higher than the previously published rates … therapies with long washout periods before conception was associated with increased risk of relapses during pregnancy. Postpartum relapse occurrence was similar to that in previous reports. Relapse occurrence in women with multiple sclerosis during pregnancy in the new treatment era. Alroughani R et al. Neurology. 2018 Feb 2

2017 … 181 pregnancies and babies born to 98 mothers with MS … compared with 244,573 pregnancies and babies of 124,830 mothers without MS … hope that … our findings … will reassure young women with MS … that the characteristics of their pregnancies are generally normal. Perinatal characteristics and obstetric complications in mothers with multiple sclerosis: Record-linkage study. Goldacre A et al. Disord. 2017 Feb;12:4-8.

1994… 39 women with definite MS were identified on January 1, 1986 using … Kurtzke Disability Status Score (DSS) … 5-year follow up … deterioration was seen particularly for childless women (p = 0.03) and women with onset of MS before or in connection with childbirth (p = 0.005) … concluded it is unlikely that pregnancy and childbirth have an influence on the long term prognosis for MS … conclusion must be interpreted with caution as the number of patients is small. Effect of pregnancy on the prognosis for multiple sclerosis. A 5-year follow up investigation. Stenager E et al. Acta Neurol Scand. 1994 Nov;90(5):305-8.

1991 … influence of pregnancy on number of relapses … analysed for 52 women who had a pregnancy during the disease … pregnancy does not appear to be a period at greater risk for exacerbations but, on the contrary it seems to act, on the whole, as a protective event. The influence of pregnancy on relapses in multiple sclerosis: a cohort study. Bernardi S et al Acta Neurol Scand. 1991 Nov;84(5):403-6.

1986 … reviewed medical records of 178 women with multiple sclerosis … found no differences in the long-term disability of women with no pregnancies, one pregnancy, or two or more pregnancies. Women who had initial symptom onset in pregnancy experienced less subsequent disability than women whose symptoms began before or after pregnancy. The effects of pregnancy in multiple sclerosis: a retrospective study. Thompson DS et al. Neurology. 1986 Aug;36(8):1097-9.

1981 … comparison with a control group did not show significant differences as concerns the invalidity and the mean rate of relapses … results indicate that pregnancy does not substantially modify the course of the disease. Pregnancy: a factor influencing the course of multiple sclerosis? Ghezzi A, Caputo D, Eur Neurol. 1981;20(2):115-7.

HOW DID YOU BEGIN TO RECOVER?

 

During the times that I couldn’t sit up, I visualized my favourite pastimes in detail – riding my horse, dancing in toe shoes, and hiking everywhere.

I worked at strengthening my back and legs by doing movements in bed, and progressed to work on the floor … lifting shoulders; twisting and turning from side to side; bending knees and moving them from side to side.

In December 1969, while being treated at the Foothills Hospital in Calgary Alberta, physiotherapist Mr. Spring came instead of the usual person who just stuck me on a bike. I share them with you as my “Spring Set” for recovery.

On my hands and knees I ease down to a sitting position,
then raise myself to hands and knees.

On my hands and knees, I lift one knee
and try to bring it to my forehead,
then do the same with the other knee.

While standing, holding onto the back of a chair,
I lift one knee, and then the other as high as I can.

Mr. Spring told me to crawl forward and backward.

Then from a kneeling position, I stand, pushing myself up with one leg, then the other.

My legs begin to tremble but we carry on. It’s so exciting! I’m astonished that I can do these things!

“And climb the stairs — every chance you get. Hold on tight to the bannister. And you must walk, walk, walk. Then get some sleep and do some more.” He makes it very plain to me that he expects results. I just have to make the proper kind of physical effort.

These exercises can be done in my own room so I’m not restricted to gym hours. The exercise that helps most is when I kneel, then stand, alternating the lifting leg. I can feel all the muscles working and in only a few days I feel my legs getting stronger.

Hockey players skate, pass, and shoot to improve their skills. Runners run; tennis players play tennis. Athletes don’t sit on the sidelines and wait to get better and neither did I. Determined to walk again and wear my black patent high-heel shoes, I faithfully did my exercises.

Dear cheerful Mr. Spring revealed a powerful strategy for reversing the damage done by MS — make the proper kind of physical effort. It’s not enough to be determined, I must also keep up the physical effort. To this day I call these exercises my Spring Set.

 

DOES THE ABSENCE OF PLAQUES OVER A LONG TIME (5 OR 10 YEARS) MEAN THAT MS HAS BEEN CURED?

Q. In other words, it’s said that MS is an incurable disease but is there a chance that the disease can disappear?

A: Plaques don’t always show up on a brain MRI and many plaques can form in the spinal cord. I would be very careful about over interpreting either what seems like a good MRI or a bad one. It is a ‘picture in time’ and may not reflect the fact that lesions come and go. It gets even more complicated when two small plaques come together to form a slightly bigger single plaque. Bottom line: your physician can probably tell you if your disease is truly stable. Such a conclusion is often reached by an in depth history and repeated neurological exams. The MRI results are of course taken into consideration but only after the clinical evaluation. Recent research reveals that MRI can be incorrect 75{69b4c995f5f4d85381c0f9d2ef1be6f5720f583e5205e1bda5cd84f701c379d2} of the time. My MRI 1995, has too many plaques to count and has been interpreted to mean that I require 24/7 care – but I’m still dancing!!!See MAYO comment.

HOW DID YOU STRENGTHEN YOUR FOOT TO OVERCOME TOE-DROP?

To strengthen the muscles and tendons of the foot
FIRST, I sit comfortably and massage my foot to stimulate circulation.
Then I sit with my feet flat on the floor, and gently, raise my heels, putting a bit of weight over my toes.
Then I raise my toes. Then I relax. I can do this anytime I am sitting.

A simple way to strengthen the Tibialis Anterior is to sit and drop a tissue on the floor. With bare feet, I crunch up the tissue. My girls and I used to have “crunching” contests. Hilarious!! These simple maneuvers, along with walking, strengthened my feet and ankles.

The next stage is to stand at the kitchen sink, hang on, and lift one heel, then the other. Then I lift both heels, and rise to my toes.

The tibialis anterior, TA muscle was found to contribute a large portion of turning force of the ankle.
The TA runs along the outside of the shin, below the knee.

 As an undergraduate student at McMaster University, I was privileged to join the neuroscience research team  led by Dr. Alan McComas. On page 228, I write about our project to investigate the strength of the foot. Published articles are:

Marsh E, Sale D, McComas AJ, Quinlan J (1981) Influence of joint position on ankle dorsiflexion in humans.

J Appl Physiol: Respirat Environ Exercise Physiol 51:160-167.

Sale DG, Quinlan J, Marsh E, McComas AJ, Belanger AY (1982) Influence of Joint Position on Ankle

Plantar flexion in Humans. J App Physiol: Respirat Environ Exercise Physiol 52(6):1636-42.

The long extensors of the toes, and four muscles act to dorsiflex (turn up) the ankle, and turn out the foot.In our project it was observed that joint position has an effect on the excitability of nerve cells that convey motor impulses. As I walked, my foot and ankle went through the whole range of positions, and the rough edges of my gait smoothed out.

DO YOU THINK THAT YOU HAVE CURED YOUR MS?

I have not cured the ms virus. I have familiarized myself with virus history, and how to live with it until it mutates itself into a state of “permanent arrest.”  I am symptom free, and do not live each day wondering about a virus that will come and go according to it’s own timetable. I take care not to stress myself by pushing too far beyond my personal limit.
My body knows how best to use its resources for self healing. 
My experience demonstrates that there is an alternative to chronic decline. We can take advantage of remyelination (self healing), and with persistent movement we can recover from the damage caused by disease activity. Researchers observe that lack of movement is more damaging than disease activity. It is also estimated that 50{69b4c995f5f4d85381c0f9d2ef1be6f5720f583e5205e1bda5cd84f701c379d2} of MS patients only have one serious episode of disease activity. Not every symptom is related to ms!
We can direct our energy to recovery with clarity of intention, getting factual information and by taking action, and having fun! Smiles and laughter produce healing biochemicals.

One important strategy is visualization.  
The brain is working just as hard when we visualize, as when we make physical effort. With visualization, brain pathways can be refreshed, as we work to make physical pathways operational.
Recent advances proof the power of our thoughts and intention to initiate the healing process.  

With insights from NeuroLinguistic Programming NLP, I am mindful of the power of words and although doctors reviewed my symptoms and attached the label ms, I do not claim ownership of ms with the phrase “my ms;” I say that doctors have confirmed the diagnosis of ms, suggesting I have made a different choice. This may seem like a small point, but the effect is significant.

WHY IS MS SO DIFFERENT FOR EVERYBODY?

The damage in the brain and spinal cord can be in different locations and of greater or lesser extent. Even though many people appear to have similar symptoms, the course may be drastically different for each of us.
Many authors observe that individual reaction to the disease is the prime factor in modifying its course.  See LETTERS FROM READERS 

Many people just give up. Others make a determined effort and still decline. Having determination is admirable; we also need information and ideas to design strategies for recovery, and we need to take action! Help is only helpful when it enables a person to recover or extend the limits of his or her own ability. Caregivers must take care not to interfere in the self healing process. It’s all too easy for family and friends to justify taking over in the misguided belief that “It’s all for the best”.

It has been suggested that ms is caused by a virus.  
McAlpine writes that if we consider a virus as the cause of ms, we must broaden our view torecognize not only the acute stage, but also subclinical, or ‘mild’ forms.
This could explain what appear to be different “kinds” of ms. The natural course of a virus is often characterized by lesions, and may terminate in recovery with the total disappearance of evidence from the body.
Some animals and people are naturally immune to a virus. Some cannot be re-infected by the causative agent, a condition called natural acquired immunity. This process of self-immunization has been redefined as auto-immunity, leading to the description of ms as an autoimmune disease, with a twist to suggest that somehow, the body “attacks” itself.

WHAT IS AN 'EPISODE'?

In my case, episodes(cycles of disease activity/damage/repair) have been quite distinct because of the obvious bouts of damage followed by complete recovery.
Definitions of an episode depend largely on the patient/observer/interpreter and Doctor/observer/interpreter. Changes in symptoms do not necessarily indicate disease activity.Research has always shown that episodes of damage/repair at the cell level often occur without noticeable clinical symptoms, and there can be serious decline, with no evidence of disease activity.Many people regard changes in symptoms as more trouble, when in fact, they may be indications of healing, that has yet to be properly reconnected and “retrained” to do the job we want. On p152, I write about muscle spasms and and “burning pain.” These symptoms did not indicate a new problem, but were related to the smoothing the process of retraining nerve pathways related to the episode of November  1972.

Think of an inexperienced telephone repairman incorrectly hooking up wires after storm havoc. This process of rewiring to ‘fix connections’ never ends.

Canadian Behavioural Psychologist Donald O Hebb 1949 proposed that neurons that fire together connect more strongly.

Neuroscientist Carla Shatz:Neurons that fire together, wire together.

However we experience episodes, or whether we can even distinguish episodes, in the microscopic universe, ms runs its course and arrests itself. Please draw consolation in that fact. That incidentally, is the classic course of a virus …

As disease activity continues, it sometimes results in symptoms we experience, and sometimes it does not. We still do not have the techno sensitivity to see the whole picture. WE also need to keep in mind, that only 3{69b4c995f5f4d85381c0f9d2ef1be6f5720f583e5205e1bda5cd84f701c379d2} of cells stimulated by magnetic waves of an MRI actually respond! See latest research on unreliability of MRI scans.

WHAT CAN I DO? MANY THINGS HAVE IMPROVED BUT MY WALKING JUST GETS WORSE.

A reader reported that he had been doing exercises and walking with some success since reading my book. He said that when he was particularly happy, or relieved about life’s demands, he enjoyed a burst of tremendous energy and so he walked 10 or even 20 times farther than usual.
All the while, he was under the stress of a bad living arrangement, a search for new accommodations, and finally a move. This reader’s gait and stamina got gradually worse. It occurred to him that he might not have been getting enough rest and asked how many hours I slept.

A: The amount of sleep we require depends on many factors. Our physical condition, lifestyle, and stress all deplete our energy reserves.
With large muscle movement, positive attitude and laughter, the body produces a flood of healing peptides called endorphins. This produces a natural high, and can act as a painkiller leading us to ignore signs of overwork! After physical activity,we need to relax and recuperate our energy.
This pause allows endorphins to do their real job – strengthening the immune system. If we go too far beyond our personal body limit, we deplete our resources and re-gress, not pro-gress. 

Yoga impresses the importance in listening to our body language. In yoga, as well as sports training, we are advised to go to our limit + 3 seconds more – then relax and recuperate energy .  
Just a small added effort extends the limit safely.
Pushing too far uses up the energy and stamina we have worked to build. It’s like trying to drive on fumes, instead of refilling the gas tank.

Share Your Experience

Recent research direction is based on perception that ms is inactive during pregnancy …

if you have experienced symptoms, or were diagnosed during or after pregnancy, please share your experience and

your feelings …  privacy assured …

If there is any aspect of your experience with the diagnosis of ms that you wish to share, it will help expand my viewpoint.

Thank you
Eva