Recovering from Primary Progressive MS

My name is Tara Burns and I have Multiple Sclerosis. I want to share with you about how I am winning the fight against MS. Apparently, the disease started a number of years ago when I was a teenager. I was always struggling through school and had to take my eleventh grade English over again my senior year. When I was twenty-nine, I woke up and went to work as usual. Later that night I became dizzy. This lasted for about a month and no one knew what this was about. It was extremely difficult. I would wake up and go to sleep feeling sick.

When I was thirty-six I was going through a divorce and custody battle. One morning I woke up and I could not see out of my left eye. I continued to go about my day thinking perhaps this was an allergic reaction to something I ate. I decided in the afternoon that I should go to the emergency room. I went with my son, thinking this was not going to be a big deal. This was when I found out that I had optic neuritis, which one can get if they have MS. I had heard of MS but I did not know anyone with this disease. I asked the eye doctor what the treatment plan would entail. He explained that I would have to give myself shots a couple of times a week. He also said that this was a widespread disease and not to get upset about anything. He said that with a dose of steroids, one usually regains their vision. This gave me great hope.

I went and got the dose of steroids after seeing the MS doctor. My vision did return later that evening! I was so relieved. What happened next was a complete nightmare. I woke up the following morning with both of my eyes completely foggy. I could barely find my way to the bathroom. I was shaky, as well as rattled with fatigue. This was later found to be an allergic reaction. I was, however, excited to start taking Rebif that day. Maybe that would help me. I became allergic to this also. I went back to the doctor and he started me on another drug. Again I became allergic. During this period, my head was in a cloud. Speaking was becoming difficult as well as walking. I had to stop going to school, which was frustrating as I was half way through my Master’s in education. I was so scared and angry at this point. I was losing control of my body, as well as my mind. Lifting my son was out of the question at this point.

My whole physical body was just giving out. I kept thinking that I was a young person who had great health up to this point. The doctor will find something that works. Completing simple tasks became difficult. I was glad I was living with my parents so they could help me. I stopped talking to almost everyone. I did not go anywhere, primarily because I was told I was legally blind and was not allowed to drive. My life crashed very hard and I was just beginning my fight. I continued trying all of the ABC drugs for MS but I found that I was allergic to all of them. If only that was the worst part.

I was crashing very hard physically. The doctor was extremely concerned. He felt he needed to treat me, but could not find anything that I was not allergic to. I then went for a second opinion from a doctor that the MS Society recommended. I was told that I would be in a nursing home and dead within a year and that there was nothing that they could do for me. I was also told that in the thirty some odd years that she had been practicing, she had never come across anyone like me.

At this point I was devastated and angry. I went back to my MS doctor and explained what I had been told. He wanted me to try the Tysabri drug. What I found out is that an allergic reaction to this drug is death. I talked to my family; they all agreed with me that I would not try this drug. So the doctor tried other drugs and I became very weak and unable to do a great deal of everyday things. For example, going to the bathroom was a major chore for me. I had to sit on the toilet for ten minutes at least and run water to relieve myself. The showers that I used to enjoy, I now dreaded. My skin was so sensitive due to all of the different drugs I was on, that the water hurt. I was exhausted and had to concentrate so hard just to be able to do simple things, like make the bed. My family was scared for me and avoided me when they could, only because they did not want to see how MS was affecting me. I was either seeing a doctor every day or going to the hospital for one treatment or another. I was having a difficult time seeing my son’s books he liked me to read to him, let alone understand what I was reading.

All I kept thinking is that I will end up in a nursing home within six months and who will take care of my son? When will I be able to see him? How will I make sure he goes to college? I wanted to see him grow up! My brothers came to visit and I lived between my grandmother’s house and my mother’s. I had no real home. I could not pay my bills because all I was getting was $135.00 a week for child support and day care was $175.00. I needed daycare because I could not take care of my son all day while going to all of these doctors’ appointments. Physically, it was becoming impossible. My mother was frantic to find some way to help.

I finally got the call that saved my life. It is one I will never forget. My mother’s friend called and said she had a phone number that I needed to call. She explained that she went to church and realized that a woman at the church also has MS. Her name is Ann Sawyer. My mother became very excited, gave me the phone number, and told me to call her. I would have right away, but I was having too much trouble seeing and comprehending what was going on. About an hour later, my mother called and spoke with Ann. She put me on the phone with her. Ann explained that she was writing this book and would send me part of it to get me started on the diet. She then gave me her phone number. My mother did not understand why I wasn’t more excited. The problem was I could not read the book and I would not be able to understand it.

My mother read it to me. She understood what I needed to do and she got me everything I needed to start the diet. I was hopeful that perhaps it would make things better. What happened amazes me and continues to every day. I can now pick up air conditioners and my three year old! I stay up past seven o’clock. I am back in school finishing my Masters and getting A’s, something that seemed impossible before. I found out that I am intelligent! Who knew? I feel great! My eyes are better, not perfect yet, but this will take time and I am willing to wait. I got my life back! I am living alone with my son and loving it. Thanks to this diet, not only am I better but I lost weight as well. There is another perk; the lesions on my central nervous system are disappearing! This diet has taught me that one can beat MS. I am living proof.

Hi Robina, I see that you

Hi Robina, I see that you are new to the diet! Congratulations! I've been on it for 1.5 years or so, and I've noticed a great many changes--for the good. I would offer you this advice from my experience. . .try to keep a journal of your eating and your symptoms each day. It doesn't have to be anything fancy, just something that you can look back to if you need. I'm suggesting this because I've found that we're all looking for the BIG changes to take place--and rightfully so. BUT oftentimes it's the little changes that are happening that can show us that we are seeing progress. For example, most people notice an increase in energy and stamina as one of the first signs of something working/changing. This could come in something as simple as saying "hey, I just made breakfast and didn't need to rest afterward" or "wow, I didn't need a nap this afternoon." Things like that. By tracking symptoms, you'll also be able to see consistencies in results. I remember I would eat corn flakes when I first started because I thought they were okay. But for me, they were a problem. I didn't realize that until I noted that every time I had corn flakes I had a bad MS morning. Another lesson learned is that this is a real journey. You may feel from time to time like the progress isn't moving fast enough but then you look back at your journal six months or a year later and see just how far you've come! I wish you the very best!

Hello Robina First of all

Hello Robina
First of all welcome to the recovery diet site, there are alot of us genuine dieters on here, so dont be put off by the recent influx of strange spam postings that seem to creep up on us every now and then!!
Good luck with the diet, and don`t be afraid to ask for help and support, i check everyday for new postings and will always reply if i can be of assistance. Like yourself i can no longer walk unaided but am still lucky to be able to drive. I came on in leaps and bounds when i first started and im sure you will too. Admitedly i`ve lapsed but only because of a huge amount of stress over the last 12 months, and i just didn`t have the time or energy to be able to focus on myself, but i wish i had`nt as im sure i would be well on the road to recovery by now.
Have faith, give it time, and most of all, remember support is always here, and however sceptical friends and family may be, it does work!!!!
Kind Regards Sarah.

I am 62 years old and was

I am 62 years old and was diagnosed as having ppms four years ago. It presented as sciaticadown my left leg which osteopaths were unnable to get rid of. I have ridden horses all of my life and have many old injuries so put it down to a trapped nerve. When the line ofpain went numb my reaction was simply to be glad to have got rid of the pain. However when my whole leg and the left side of my body became numb I began to fear ms. The fear intensified when the lower part of my right leg started to go numb. My doctor sent me to the neurological department of the nearest major hospital, where they did mri scans lumbar punctures x-rays blood tests and every other sort of test available while assuring me that I was far too old to have just developed ms. Innitially they suspected a tumour in my spine or in my brain, but could find nothing but a few lesions in my spinal cord. I was given i.v. prednesolone 1000mgs each day for three days, which had me flying rather than walking out of hospital, and the numbness was mostly gone. This treatment has been repeated two more timesbut I now need other medication to compensate for the lack of bone density caused by the steroid, and have resolved to have no more. I am determined to beat ms, as I can no longer walk or drive, and my world has shrivelled to nothing outside my home. I am just embarking on the diet so watch this space.

i too have ppms , was diag.

i too have ppms , was diag. in 2005 , since starting the diet in 2008 i am slowly recersing the symptoms , i have a lot of weakness on my left side and need to use a power chair . stick to the diet , you are very lucky to have ann sawyer for a friend , her knowledge will save your life , i am feeling so much stronger and nor like sleeping all the time and even the dreaded spasms are loosing thier intensity , i did find that taking some supplements help , like coq10 good for energy as well as nacl glucosamine ,good for healing the leaky gut .
good luck and stay strong.
ken

Those are tough times

Those are tough times spending on the toilet. At least you already felt relieve now.
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Me either!!! Who are what

Me either!!! Who are what are these strange postings that appear to have cropped up over the last few days?!!

I don't see the point of

I don't see the point of such a post in this forum.

The course of Multiple

The course of Multiple Sclerosis (MS) is initally unpredictable for any particular person. While some are only minimally affected by the disease, others experience very rapid progression to total disability. Eventually all MSers spend time between these extremes, for varying periods of time. testking 350-001 In general the younger you are at the official onset of MS, the slower disability progresses. Most of the onset damage is completely repaired and there is little or no initial disability, even when the onset is severely disabling. However, with or without visible (clinical) attacks, the MS disease process continues. After 10 - 15 years or upon reaching approximately age 40, testking 350-030 the number of clinical attacks decline; but disability now becomes increasingly visible, lingers longer, and remissions cease. Conversely, the older you are when MS clinically begins, the less likely you are to have a complete initial recovery. At first, attacks are more numerous; but this pace lessens very quickly and disability quickly accumulates, before leveling off. Although every individual experiences a different combination of MS symptoms, testking 640-801 there are a number of distinct disease stages and/or types that have historically been identified and recognized, as the naturally occurring course of Multiple Sclerosis.

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