For my first post I will talk a bit more about my plans for this blog and about me. I originally planned to start a blog to document my life dealing with MS, the diet I was following, and then eventually through the process of HSCT. In past years I have led a frugal homesteading lifestyle and incorporating MS into the mix made things interesting.
So a bit more info about me. I am 33, married, and a mom of 2 young kids. I was diagnosed with MS in late February 2015 around the time my youngest turned 3 months old. Like most people with MS I got the run around from doctors and it took months to get answers and a diagnosis. My first real symptoms showed up 12 weeks into my last pregnancy, it started with tingling, numbness, and burning sensations shooting up my legs. When I brought this up to my OBGYN I was told it was related to the sciatic nerve and was completely normal in pregnancy. Later in the pregnancy I continued to have the numbness and tingling in my feet and legs but I also developed balance issues, vertigo, fatigue and dizziness. Again I was told that is completely normal in pregnancy and to not worry about it. My previous pregnancies were fairly easy and I never experienced anything like this, but I took the word of the doctors and figured it would go away after the birth. Four days after giving birth I had my first big relapse. Numbness got way worse, had arm and leg weakness, hot/cold flashes, dizziness, cog fog, fatigue, trouble walking and vertigo. I went to the ER and the doctor looked at me like I was a complete nutcase, in fact she told me that this is 100% normal after a pregnancy and to deal with it. I was sent home and told I should be back to normal in a few months. So I continued on with life although I had major difficulties. 3 months later I started getting worse again, all the same symptoms just way worse plus full body numbness and right eye pain. Went to urgent care, they did some blood tests and an EKG, said it was pregnancy hormones and looked at me like I was nutty, and was sent home and told it could take up to a year after the birth to feel normal again. Next day I followed up with my family doctor, got a similar response although he did some more blood tests. The next day I got way worse to the point staying upright when walking was difficult, so back to the ER. I pleaded with the doctor to figure out what was wrong and amazingly she listened. She did some more blood tests and then asked if I was willing to stay a few hours longer to get a C-Spine MRI which I agreed too because I just wanted answers of some sort. She had said at the time that she suspected Multiple Sclerosis and that an MRI would give an answer. So finally after more than 9 hours in the ER I finally got my diagnosis of MS and received my first infusion of steroids and then was sent home. Later that night I felt much better, I could think more clearly and symptoms weren’t as bad. Over the next week I had 4 more infusions of IV steroids, a neurology appointment, and more blood draws to rule out NMO. I skipped a day between my first and second doses of steroids because it was Sunday and the infusion center wasn’t open, but that Sunday night was brutal. I was stuck in bed for almost 16 hours straight, the vertigo was so bad I couldn’t move from my spot in bed, intense pain, and any movement caused excruciating dry heaving spells. Literally the worst day of my life. It took several months to be able to walk somewhat normally and be able to fully function in everyday life.
In the time since my diagnosis I’ve had relapses approximately every 3 months, some worse than others but most involving optic neuritis. Most of the time I have recovered without the use of steroids, but for one really bad optic neuritis attack in September, the eye pain was so intense I did a round of oral steroids.
How am I doing now? Well my MS symptoms come and go and fluctuate from day to day. I have permanent numbness and tingling in my feet and in my fingers, I occasionally have vision problems and walking problems. Cog fog comes and goes along with fatigue. Hot weather and PMS are the main triggers for a lot of the symptoms. My EDSS score is currently 1.5 but fluctuates at times.
As for treatments I have tried, I started taking Copaxone in April 2015 and continued with it until last week. I don’t really think it was helping as I continued to relapse on it, but I got my HSCT date before I could switch to any new meds. I do take between 5000-10000iu of Vitamin D every day depending on the time of year.
I played around with diet and had some success with it helping with my symptoms. I first started on the OMS diet, basically vegan plus fish and that made my symptoms way worse. My body just could not handle eating more rice, grains, and beans. I then moved to a more anti-inflammatory paleo diet and went gluten and dairy free and that helped with a lot of my symptoms. The cog fog and fatigue became rare occurrences and overall I felt much better. I have been incorporating some gluten back into my diet as I know I will be eating bread products in Russia and so far no real issues other than increased tingling in my fingers.
I am now 2 months out from leaving for my HSCT in Russia and am trying to get everything figured out. Over the next 2 months I will be posting about what all I am doing to get ready for Russia. Then I will be blogging throughout my treatment in Russia and recovery after returning home.
Thanks for following my journey, I hope this blog will help others in planning their own journeys to pursue HSCT for MS or other autoimmune conditions.