I am thinking maybe some context on how I got here might be appropriate. If you don't care, just skip this one. Especially, if you are tired because this ended up longer than I thought it would.
In November 2004, I was 6 months out from having my second baby. I had my kids 18 months apart so I had spent the majority of the previous 3 years pregnant and/or breastfeeding. I had just started doing yoga again and I was feeling numbness in my groin area and in both of my legs. I thought I must have pinched a nerve or tweaked something while doing yoga. It past in about a week and I didn't think anything else about it. A few months later in February (2005), I noticed a stronger numbness in my groin area which spread to my legs making my skin feel like it had 'fallen asleep'; down to my feet then by the weekend up my stomach area and to my arms. When I started to feel tingling in my fingers, I decided it was time to go see a doctor. It was the weekend so I went to a clinic. The doctor did some strength testing and poking me with a needle to test my sensation. I was convinced it was a pinched nerve but he didn't agree. He suggested I see my regular doctor on Monday which I did. My regular Dr did the same testing and agreed that he didn't think it was a pinched nerve; he sent me to get a MRI. I had a brain and spine MRI with and without contrast. This was my first and it seemed like I was in there forever. I didn't have any lesions on my brain but had a very large one on my spine. I was sent to see a neurologist.
The neurologist pointed out that the lesion on my spine was causing my numbness and diagnosed me right then with MS. I instantly thought this guy was a quack. I was a healthy person. I just had two healthy pregnancies and very healthy babies. I wasn't a super healthy eater but I wasn't eating fast food everyday; I could have been doing more cardio but I did yoga. Plus no one in my family had MS. I needed a second opinion; I was sent to a MS Clinic at Wayne State University in Detroit.
There they told me the different tests I could do. One of which was a spinal fluid test which I wanted to avoid at all costs. I had delivered both of my kids without an epidural. Just out of fear of having a needle put in my spine; I did NOT want to go down that road here. They ran some blood tests to rule out things like Lyme disease, Devics and Lupus. I didn't have any of those markers. Then they sent me to have Evoke Potential tests. Those are the tests where they give you a stimulus and measure how long it takes for the messages to be sent through your nerves. I remember doing four of them total over two days. During each of them they had sensors on my head, arms and legs. In the first one, I watched a TV screen with a black and white checker board that flashed and switched the squares from black to white. The second one was a clicking sound in my ears. The third and fourth were electric stimulus on my thumb and big toe that made my thumb and toe twitch. Thinking about those tests now, laying on a table while my toe or thumb were twitching; seem a little medieval. After two days and hours of testing; they came back normal.... 😞
My last option was the lumbar puncture aka spinal tap. 😖 By this time, it was around August of 2005. I did the procedure and it ended up as bad as I had feared. I developed a spinal leak which left me unable to stand up straight without getting nauseous and my head felt like it weighted 50 pounds. I couldn't even sit up at the dinner table long enough to eat dinner. Keep in mind that I had a 1- and a 2-1/2- year old at this time. My neurologist at the clinic was out of town and the office wasn't much help for some reason; they let me go a week like that. I ended up in the local ER to get a 'blood patch'. They take some of your blood and put it in your spinal fluid to patch the leak. It works so fast it's unbelievable and I had felt bad for so long, it was a relief. The downside is that the iron in your blood causes back pain while it's breaking down in your spinal fluid. After all of that...the results came back 'abnormal' but not 'MS abnormal'. I was told normal is one band and MS 'normal' was three bands but I had two. All of that for nothing. I was told that they would do another MRI in December which would be almost a year since my first and they would see me after that.
During all of this, my baby turned one; I had to go back to work at least part-time and I was having one symptom after another. My husband worked locally at this time (he started traveling for work the next year) but was part of an IT support desk so could work odd hours. Luckily, my husband's grandparents were young for great-grandparents and helped us out with the kids during the day and we had other family who lived close by too. I don't know how we would have made it through without them. I remember the highlights of this year but everything else is a blur. During the time between February and December of 2005, I had an itching sensation that felt like it was inside my arm; the skin on one of my sides got really sensitive; and I lost sight in half of my right eye. I first noticed the eye because my depth perception seemed off and when I closed my left eye, I realized the bottom half of my right eye was cloudy. Plus I had another relapse sensation in my legs. Each time it took about 3 months for these things to clear up and some of them were on top of each other. It was a scary time. I didn't know why these things were happening but every time I would have a new symptom I would look it up online and it would be a MS symptom. Even though my spinal fluid test was inconclusive by the time October rolled around, I already knew I had to have MS.
We also knew by this time that the only medications available were shots that had a lot of side effects and honestly weren't that effective. I wasn't really interested in that and my husband didn't really like the idea either. Being the expert researcher he is 🤓 he went to work finding out what other options there were. He found a book called the "The Multiple Sclerosis Diet Book" by a Dr. Swank that was originally published in 1972 and updated later in '77 and '87. This was a time when there were no medications or much of anything for MS. Doctors would basically give you the news and tell you "good luck". Dr. Swank found by putting his patients on a low saturated fat diet, they had less relapses and less progression over time. I started following the diet around November 2005 and the activity in my relapses slowed down significantly.
I had another MRI in December and met with my neurologist at Wayne State in January. I now had lesions on my brain and he was comfortable with officially diagnosing me with MS. I tell people I was officially diagnosed in January of 2006 but that I've had it since November of 2004 and I've known since the fall of 2005.
My husband had kept his researching going and found something called LDN - Low Dose Naltrexone. There was a lot of anecdotal information out there about it helping all kinds of autoimmune diseases. There wasn't much hard information/ data so doctors weren't prescribing it because it's considered off label. We ended up buying it online and I started taking it around February, 2006. We did a lot of reading online and bought a book called "Up a Creek with a Paddle" written by a women whose husband had progressive MS and LDN had helped him. I started dissolving the 50mg pills in 50ml of distilled water and taking 4.5 ml of the liquid at night. I saw another improvement/slow down in my relapses and some increase in my energy. Some people report odd dreams/nightmares and/or just trouble sleeping. I didn't have any issues. I finally felt like I was getting some control after the scary previous year. I also bought another diet book in the fall of 2006 called the "Gold Coast Cure" by Ivy Larson and her husband. She has MS and used Dr. Swank's diet but also added in more whole foods and had great results. I was feeling better and messing around with my diet; taking out dairy and gluten. We as a family made the switch from dairy milk to almond milk. I even went vegetarian for awhile but I just wasn't eating enough of a variety and didn't have enough energy. I had started exercising more at this point and I was starting to get tired and not able to finish my workouts. I also started doing things like taking more Vitamin D and fish oil. Fish oil and Vitamin D were noted in the Dr. Swank book as having some notable influence on the prevalence of MS based on research looking at which parts of the world had more incidents of MS.
We moved to Texas in 2009. I was having issues with seasonal depression during the winter months and because Vitamin D is a big deal when it comes to MS; I figured if I could move south and give my kids a better chance of not developing MS, I would do it. It has been a good move. I went over a year after we moved here without a relapse.
Overall, I have been really stable since that first year. I've continued with just the LDN and my diet. I started getting the LDN prescribed to me after we moved to Texas. Although, I am not always as strict with my diet at times. I've had two major relapses since that very first one in 2005. The first was around August of 2013, my legs and especially my feet got extremely numb. My feet were so numb that I was hobbling around and limping like a 90-year old. During that relapse my husband and I went to a concert, he dropped me off at the door so I wouldn't have to walk. I was wearing flip-flops and lost one. I had walked at least five steps away before I looked down and realized I had lost my shoe. That's how numb my feet were. I couldn't even feel the warmth of the sidewalk or the texture! I ended up getting 3 days of a steroid infusion which helped it subside faster.
My second major relapse was in early 2015. I was working full time at this point and my job was really stressful. I hadn't realized that stress brought on relapses for me until then because I had never really been this stressed out. In February, I had some numbness and by March I was realizing that my concentration and focus was being affected. I didn't always drive to work; I tried to take the bus as much as possible but when I did, I parked in a parking garage and I rubbed my bumper on the wall near the ticket window. I had also bumped into a couple curbs at other times. The final straw was when I missed a deadline at work but not because I didn't have enough time to do it; I didn't even remember having a deadline. I had known something was off but I was trying to power through it. After I missed that deadline, I asked for a medical leave. I ended up taking three weeks off just to decompress and get my head back together. Also at this time, my husband and brother-in-law were about to take a major step with the business they had started and we realized that A) my stress level with my job was not going to get better. I had already gone from 40-hours to 30-hours per week and B) our lives were about to get a whole lot busier with the expansion of the business. I did go back to work but only for another two months and then I left in May.
We've been lucky that the business really took off and I didn't have to go back to work. That wasn't the initial intent but it ended up working out that way. The business keeps my husband busy more than full time and our kids were moving into middle school and now high school so it just made sense. It's definitely helped me not to have the added stress to my life.
After my cognitive relapse in 2015, I bought a book called the "The Walhs Protocol" by Dr. Terry Wahls. Another diet and exercise/life style change book. Dr. Wahls has MS and was progressing fast and in a wheel chair. She was able to reverse her progression and start to ride a bike again by changing her diet to a version of a Paleo diet and some life style changes. Her muscles were so weak that she used e-stimulation to get her muscle tone back and she made some changes around stress in her life. I did the diet very strictly for a good four months and I felt really great. Then summer rolled around and I fell off the
wagon. She recommends eating some meat, a variety of it but really emphasizes colored vegetables (3 cups); sulphur vegetables (3 cups) and greens (3 cups) every day. That can be a lot of work and a lot of eating. I do what I can and just try to make better choices all around.
Other smaller progressions that I've had. I started getting tingling in my finger tips once in a while. The first time it happened we actually thought it might be carpal tunnel. That started around 2014. In February 2013, I ran a half marathon. I had spent all of 2012 training for it. I had planned to keep running and had trained for a 10 mile run in Austin the following year but a week before my knee went weak on me and I couldn't do it. I stopped running because it was just too frustrating to train for something then not be able to do it. Sometime in 2014, I started getting a 'warning shot' when a relapse was coming on. I would wake up in the morning, stand up and it would take my legs a couple minutes to want to move. They would shake a little and maybe it was a bit of spasticity. Because sometimes they would almost feel bouncy, I couldn't really control it and it was only when I first got up. The rest of the day was fine. It seems like it would start, I would have some other type of relapse like numbness; the numbness would go away usually quickly and the leg thing would slowly go away. At some point, I did start a symptom tracker because I wanted to see how I was progressing. Sometimes you wave away these things as minor but when you look at the whole picture, you realize maybe you're not doing as well as you thought.
During this whole time I was seeing a neurologist (I had two in Texas), typically once a year sometimes for larger stretches because I didn't have much going on. Both thought overall I was doing as well as I would have been doing taking the shots. When the two larger relapses happened, my neurologist would bring up other medications. The shots had gotten better and then there was an oral medication but I just didn't think they would be any better then what I was doing so I never did it.
That leads me to now. My second Texas neurologist retired on me too. A brain MRI I had done for hearing loss found I had active lesions so my primary Dr wanted me to follow-up with a neurologist. Now, I have a neurologist who specializes in MS for the first time since we moved to Texas (10 years ago already!) and he said. "You are doing good but I want to keep you good and this is the best way I know how". My husband and I took in all the things I've been through and realized maybe it's time to do something else. I've been lucky but I've also had MS for almost 15 years now. No one knows how many lesions are too many and what pushes you from RRMS (Relapse Remitting) to SPMS (Secondary Progressive). They just know that every year after 10 years it gets more and more likely.
I don't even know how I got MS in the first place or really what side of the family it came from. My family on my paternal grandfather's side has skin cancer. Almost all of us including my grandfather have had abnormal moles, Basel cell skin cancer and I have had a melanoma. But not really autoimmune diseases. My maternal grandmother and all her sisters had thyroid issues as they got older and my grandmother also had rheumatoid arthritis as she got older and my mom does now. I know those are autoimmune diseases but they also just happen when you get older so I am not sure that is really related.
Anyway, I do feel like this medication is extreme but I am hoping it will reboot my system so that I no longer have this flaw in my immune system and I want to use the knowledge I have for eating and general self-care to make sure I don't develop it again. I am also trying hard to make sure my kids never do.
