My Progressive MS Story

 

My Progressive MS Story

    My goal in writing about my MS experience is to offer information that may be helpful to people who have MS. That my experience may be helpful for early detection and also for lifestyle changes for people who know they have MS and for people who suspect they may have MS is the focus of this essay. The two most important factors I have found that I can do in helping me cope with MS is sleep and diet. It really matters what you eat and how often you eat, and the quality of your sleep. I also encourage you to take breaks from physical activity because people with MS have a limited amount of energy. People with MS should rest and, in a sense, recharge themselves. This is important to reduce your falling risk. And I also encourage you to completely avoid alcohol. If you have symptoms similar to mine, I encourage you to see a neurologist. Also, I’m not a doctor, so my advice is based on my personal experiences, which I hope may be helpful to you. I encourage you to see a neurologist if you have any of the symptoms I list below.

    In my thirties, my feet burned when lying in bed at night. I didn’t think much of it. I’d leave my feet uncovered at night to help reduce the burning sensation. This may have been an early sign of MS.

    At age 47, my right leg would suddenly seize with tightness while running, often causing me to fall forward. Because of the tightness, I couldn’t run further, but I could walk home fine. I thought I was overdoing it because I was pushing myself to improve my running time and because I was approaching the age of 50.

    At age 49, I was running in the Anchorage Heart Run. After the run started, all seemed normal for several minutes until my right leg tighten up. I walked it off and tried to run again, but the tightness returned. I couldn’t run at all for the rest of the race. After the race, I spent the next few months trying to run. I’d begin with running a short distance until my right leg tightened up. I’d walk it off and try to run, over and over again. During this time I thought maybe I should see a doctor, but I thought I’d be okay if I took the rest of the summer off from running.

    At age 50, I developed a foot drag with my right foot after walking a few miles. I decided to go on long walks for exercise, since I couldn’t run. I noticed the foot drag would start after the first few miles. I made an appointment to see my primary care doctor, who referred me to a neurologist. The neurologist determined my problem was my L5 disc, so I started cortisol injections. At this point, my MS symptoms were difficult to notice because I seemed normal. The foot drag and leg tightness were not apparent until after sustained physical activity. So, the neurologist didn’t see the symptoms I tried to explain to him.

    For the next five years I continued the cortisol injections for my L5 disc on the advice of my primary care doctor. My symptoms of foot drag and leg stiffness, also called muscle spasticity, continued to increase to the point where they were always present from the moment of waking to the moment I went to bed at night. I stopped going for walks because of fatigue and weakness and because of falling. During these five years I develop several other symptoms listed below:

Body restlessness that prevented sleep, tossing and turning all night.

Fatigue and weakness.

My right leg would kick and twitch at night preventing sleep, every 3 to 7 seconds.

Muscle spasm pain in rectum that would pulse like electricity, every 5 to 13 seconds.

When I did fall asleep, I would instantly wake up, over and over.

Waking to urinate several times a night.

Constant stomach bloating with pressure and pain.

Constipation for many days, then

Urgency to go to the toilet, often going in my pants.

Urination would come out slowly, sometimes taking 20 minutes to empty bladder or would come out suddenly into my pants.

Right hip pain that prevented sleep and sitting in a chair.

Edema in both feet and legs, but more so on right side.

Multiple falls caused by my right foot catching on something.

Multiple falls cause by any sudden movement, especially to turn around.

Certain sounds, like dishes clanking, caused a jolting head and body pain.

Muscle spasticity in right leg, right hip, and lower back.

    I would go multiple nights without sleep, and when I did sleep, it was short, and I often woke feeling unrested. Sleeping pills rarely helped me and often made me feel more miserable and even more sleep deprived. My life consisted of watching movies, playing computer games, watching You Tube, and trying to take naps during the day. During those five years, I was too proud to use a cane. If I had, I would have prevented many falls.

    At age 50, I started to drink wine. It began with half a bottle. Then a whole bottle. Then two bottles. Then at around the age of 53, I decided to drink whiskey and vodka because wine is expensive. My thinking was that I could drink more often during the week with whiskey and vodka. I developed a taste for vodka. I used an 8 ounce cup to drink with. It began with half a cup of straight vodka. Then a full cup. Then two cups. Then I don’t remember how much. I remember one morning holding a large bottle I had bought the previous day and it was nearly empty. At this point, I realized I was killing myself, so I stopped drinking vodka. It took many months for the desire and the urge to drink to fade away. Occasionally, I would get a few bottles of wine, but I stopped that as well. The alcohol provided a temporary relief from the misery I felt from all my symptoms, but at the cost of multiple day long hangovers. For some reason, I was willing to endure the misery of hangers for those short periods of intoxication that numbed my body and my mind. I was self medicating with alcohol, but at the age 54, I finally stopped drinking.

    At age 55, I had a minor stroke. The stoke added more symptoms. I developed a minor weakness on my right side. My right hand was weaker than my left hand, and my right leg felt heavier than my left leg. I had to use a cane to walk because I felt off balance and weak. Additionally, sounds became even more painful. Hearing sounds felt like a painful shock going through my body. The turn of a door knob. The klinking of silverware. The closing of a door. The dropping of something on the carpet. Also, I developed an intense fear of sleeping because to me it felt like dying. I developed an overwhelming sense of dread that my life was ending. At this time, I was an atheist, and I believed that when life ended, there was nothing after life. I didn’t want my life to end. I spent much of my time over the next several months lying in bed, watching You Tube.

    Shortly after my stroke, I saw another neurologist. He determined I had Devic’s Disease. He ordered a spinal tap to verify his diagnosis. After the spinal tap, he said it wasn’t Devic’s Disease. Then, after having some blood work done, my primary care doctor said I had Scleroderma. I saw a Rheumatologist and he determined that I did not have Scleroderma. With each diagnosis of, Devic’s Disease and Scleroderma, I believed my life was ending and even after I was told that I did not have those diseases, it took me awhile to accept that my life wasn’t ending at that time. I decided to find another neurologist because I was finally able to afford health insurance through my wife’s employer, who increased the amount they would pay on our behalf. The next neurologist, who is my current neurologist, ordered an MRI of my brain and of my spinal cord in my neck. She found a large lesion on my spinal cord in my neck and a few tiny lesions on my brain. She gave me the diagnosis of Transverse Myelitis. There is no treatment for Transverse Myelitis, so I began to look into my diet.

    I found the Wahl’s Protocol diet on the internet. She is a researcher in Iowa, who studies the effects of diet on MS. She has MS herself. She has seen significant improvement in her quality of life, as well as in the people with MS who participate in her studies by changing the food they eat and by fasting. She calls for nine cups of vegetables and fruit everyday, and to eat meat, preferably red meat, and organ meat, like liver everyday. She calls to avoid eggs and dairy and breads, grains, cereals, and all processed foods. She also calls for fasting between meals. I decided to eat once a day. I did the Wahl’s Protocol diet for six months and I noticed significant improvements. Over the course of the six months I noticed:

My body restlessness completely disappeared, gone.

I had less fatigue, but fatigue was still an issue.

I began to sleep a little better with less waking up, but sleep was still poor.

Constipation was completely gone, but was replaced with horrendous farting. I mean constant non stop, smelly, like I never smelled that kinda farting before. And my wife stuck with me throughout the whole smelly experience.

I often had loose stools, almost like diarrhea.

Urination flowed better, but was still an issue.

Less stomach bloating and pressure at the end of the day.

    I would eat one large meal of vegetables and beef and liver everyday around lunch time. Because of all the vegetables, I had bloating after eating, but by the end of the day, the bloating and pressure and pain was gone or was significantly less.

    After six months had passed on the Wahl’s Protocol diet, I decided to try the carnivore diet because I had enough of the farting, and I noticed that when I ate beef and liver, it was like my body was thanking me each time I ate it, especially when I ate a medium rare steak. I continued to fast after eating one large meal every day. I followed the carnivore diet for about one year. Over the course of the year, I ate beef, and liver, and I added egg yolks, and sardines, and dried seaweed. I noticed:

Without working out, I lost weight, over 40 pounds.

Without working out, my strength increased.

Without working out, my muscle size increased.

Stomach bloating and pressure and pain was completely gone. My stomach was flat.

Urgency to go to the toilet began to decrease and

Urination flowed better, but not always.

My bowel movements were small and were every two or three days, mostly without constipation.

I noticed that my body had less waste when I ate only meat.

I started to experience less pain from sounds.

My sleep improved a little in that I got up less to go to the toilet, but sleep was still an issue.

    The only problem I had with the carnivore diet was I felt unsatisfied after every meal. I craved carbs, so toward the end of the year, I added white rice to my meals, which was what I needed to feel satisfied.

    I highly recommend fasting. Fasting has been significant to my healing and recovery. Fasting provided a break for my digestive system to heal and encouraged my body to clean itself up. Also, fasting taught me to control my body, instead of my body controlling me to eat whenever I felt hungry. It’s like a victory I have over my body everyday. When it is time to eat, I thoroughly enjoy every meal, even if it’s a can of sardines. Food becomes more meaningful after fasting. There are various ways of fasting you can try.

    At age 58, I developed significant pain in my right hip. I saw an Orthopedic doctor, who recommended a steroid injection into my right hip. After the injection, not only did my hip improve, but the twitching and kicking in my right leg significantly decreased. Also, the muscle spasms from my rectum significantly decreased. The reduction in both of these symptoms led to a significant improvement in my sleep quality. I still had these symptoms, but the intensity of each shocking jolt was reduced and the twitching was weaker and at times showing no symptoms. This was a big deal in my sleep quality moving in the right direction. I pursued a second steroid injection when they would let me, but after that injection there was no further improvement.

    Also at age 58, I found that soaking in a hot bath before bedtime calmed my muscle spasms and leg twitching at night. Soaking in a hot bath has been a game changer in my sleep quality. I had taken showers most of my life, but taking a hot bath and soaking in it for 20 minutes provides hours of restfulness that lasts into the night. Because of my MS, I am sensitive to heat. So, I become very weak and a fall risk after soaking in a hot bath, but the distance between my bed and the tub is short, and once I lay down, and after about one hour, I have recovered from the weakness. I highly recommend using a walker to go from the tub to your bed, and to have your bed clothes already laid out on the bed.

    At age 59, I had an increase in my symptoms that lead to a change in my diagnosis, which lead to me receiving medical treatment. The spasticity that primarily affected my right leg began to show in my left leg. And the spasticity in my right leg increased. I could feel my right knee locking with movement and tightness behind my left knee. My legs were becoming like peg legs, difficult to bend at the knees. My walking speed went from normal to slow. Also, I couldn’t stand without holding onto something, like the wall or furniture, without falling over. I switched from using a cane to using a walker. My neurologist order an MRI, which showed a change in my lesions. She changed my diagnosis from Transverse Myelitis to Progressive MS. The change in my diagnosis meant I could receive treatment because there is a treatment for Progressive MS. Once every six months, I receive an Ocrevus infusion that destroys a certain segment of my immune system to reduce my immune system from attacking my nervous system. The Ocrevus infusion is meant to slow the disease. It’s been one year since I started the Ocrevus infusions. I’ve had three sessions. The first infusion dosage is split into two separate sessions a few weeks apart. Six months later I received a full dosage in that session. I have noticed some significant changes in the last few months including:

I can stand now, without having to hold onto something, though I still have balance issues when walking.

My legs can bend at the knees better and my legs are less like peg legs.

With physical therapy, I have noticed increased strength and endurance. Previous physical therapy always made me weak and tired.

I have become more active in my daily life. For example, I started going to church. I attend a men’s group on Tuesdays at 7pm, when I would normally be in bed because of fatigue.

And, yesterday, I mowed the lawn for the first time in many years.

I am sleeping the night through. Often not having to wake to use the toilet.

    The Ocrevus infusions can cause an anaphylaxis response, which I did experience twice. During the first session, the nurse increase the dosage at timed intervals. At one point, I experienced itching at the back of my throat. The nurse shut off the infusion and started a saline solution to flush out my system until the itching was gone. Then the nurse restarted the infusion and at a slower pace, she increased the dosage until I was able to receive the full dosage. After the saline flush, I had no further problems.

    During the second session I had no problems.

    During the third session, I experienced the itching at the back of my throat again. The nurse shut off the infusion and started a saline solution, like before, to flush out my system until the itching was gone. Then the nurse restarted the infusion at a slower pace until I was able to receive the full dosage, just like my first session. And after the saline flush, I had no further problems.

    I’m now 60 years old. I have added eggs, cheese, rice, flour tortillas, and ice cream and chocolate to my diet. I still fast and I still eat one large meal a day, but this year I have added fermented and pickled vegetables to my diet, like sauerkraut, pickles, beets, carrots, onions, olives, jalapenos, and cauliflower. A typical meal for me consists of beef, sardines, cheese, egg yolks, fermented and pickled vegetables, seaweed, and occasionally white rice, or a flour tortilla. I cook in butter or beef tallow. Though, in the last year, I have been missing the mark because I have been eating ice cream and chocolate. I’ve noticed that ice cream that has any type of gum ingredient is highly inflammatory to my digestive system, but ice cream made without any gum ingredients is less inflammatory. The gum ingredients, like Xanthan Gum make a nice and creamy ice cream, but are harsh to my digestive system. My go to for ice cream is Hagen Daz Vanilla. Every store bought chocolate bar I have tried causes me inflammation, but I have noticed that the Nutella Hazelnut chocolate filled cookie doesn’t bother me much. Also, I have noticed that when I make homemade desserts, cookies and cakes, I have less inflammation compared to the store bought. Homemade has less sugar and isn’t as sweet as the store bought and doesn’t have a long list of preservatives and other ingredients.

    My current quality of life has improved significantly in the last few months. I still have to use a walker, but I can stand on my own. I have more physical strength and endurance, which means I’m not always in bed. I often sleep the whole night through without having to get up to go to the toilet. And when I do have to get up to go to the toilet, it’s almost always once a night. Getting quality sleep has been a game changer for the improved quality of my life today. Eating quality food has been a game changer for the improved quality of my life. Soaking in a hot bath has been a game changer for the improved quality of my life. Fasting has been a gamer changer for the improved quality of my life. However, I continue to experience these symptoms:

Occasional constipation.

Occasional urgency to go to toilet.

Balance issues, such as feeling I might fall over when walking.

Muscle spasticity in both right and left legs, increases with walking.

Muscle spasticity in right hip and lower back.

Right leg twitching at night, is reduced and sometimes not noticeable.

Rectal muscle spasms are reduced and often are not noticeable, but they do flare up.

Weakness and fatigue, but less often.

Pain in right hip, but at a lower level.

My right side is still weaker than my left side because of my stroke.

Sounds are still painful, but much less compared to the past.

Minor edema in both feet and legs. The edema increases with prolonged standing and decreases with activity and resting.

I continue to fall because of catching my right foot onto something.

I continue to fall if I move suddenly, such as to turn around, so I try to keep my walker near me.

What has Changed Since the Age of 50

1. The one symptom that is new since the age of 50 is spasticity in my left leg. Although, my left leg is still my dominate leg and is still more flexible and stronger than my right leg.

2. The symptom that increased since the age of 50 is increased spasticity in my right leg, lower back and right hip. Because of the increased spasticity, I have one walking speed, which is slow. If I try to walk a little faster, the spasticity tightens my leg muscles, which increases my falling risk.

3. My walking speed is now one speed, which is slow.

4. I have to use a walker because my balance when walking is poor. I often use my quad cane and a second walker for walking in my home.

5. My right leg is less restless at night when trying to sleep. Soaking in a hot bath has helped significantly calm my leg.

6. Muscle spasms in rectum has significantly deceased with soaking in hot bath. When it flares up at night, I get up and take a second hot bath, which helps significantly.

7. Significant improvement without having the urgency to go to the toilet. I rarely go in my pants now.

8. I have a bowel movement most every day and it’s in the toilet.

9. I have increased strength and endurance, which began a few months ago.

10. Significant reduction in stomach bloating and pressure and pain. It was completely gone when I ate meat and white rice only.

11. I am sleeping through the night more often, which began a few months ago.

12. Pain from sounds is significantly less.

Quality of Life Tips

1. Don’t put off seeing a doctor, like I did.

2. Get a walker early on and get one that lets you adjust the height of the handles. Adjustable height handles will save you some backache from walking hunched over. Find a walker that is easily folded to put into your car trunk and that is easy to unfold. Consider a walker to keep in your car trunk and consider a second walker just for walking around your home.

3. A quad cane because they stand on their own. This is so you don’t have to lean your cane against something and then watch it slide over onto the floor.

4. Try replacing showers with soaking in a hot bath to reduce restlessness and pain. This may help you sleep at night.

5. Avoid alcohol.

6. If you have stairs at home, try living on one floor. If possible, live in a home without an upstairs and without a basement because stairs will increase your falling risk.

7. Take short breaks to rest and recharge your energy. It would be preferable to lay down. 5 to 15 minutes. This will help reduce your falling risk.

8. Install hand rails in your bathroom. Avoid the suction cup type hand rails. They are useless and dangerous. Install hand rails that need to be screwed into the wood studs behind your drywall.

Jesus Christ is My Lord and Savior

    At age 59, I accepted Jesus Christ as my Lord and Savior. The feeling of dread that my life was ending is completely gone. I no longer fear that I will end and become nothing because I trust that Jesus has taken my sin punishment for me on the cross. I have given my life to him and he has given me his righteousness and will raise me up with him. I am in Jesus and Jesus is in me and he has given me eternal life. I believe the reason my life has significantly improved in the last several months is because of Jesus Christ, not because of anything I have done because there is nothing I can do without him. Jesus is God. He is the Son of the Father, and Jesus sustains life and has created all things. There is nothing I can do without him. Before Jesus, I was miserable, poor, and blind, but now I live in his life, and I accept that this body of mine will die, but my spirit will live eternally with him. I encourage you to seek and to ask and to knock, for Jesus will answer, for he will open the door, and you will find him. I encourage you to be open and to not be hardened. That I went from being a hardened atheist for 16 years, then at the age of 59, to believe in God, is a miracle of God. Look to know him in the bible and find fellowship in other believers and pray to the only true God, the Father, the Son, who is Jesus, and the Holy Spirit. There are many false teachers and false prophets, so I encourage you to look to Jesus in the bible and to join a church that teaches from the bible. Check out biblegateway.com for a great bible resource that also offers multiple audio versions to listen to the bible.

    May the grace of God be with you.