July 2018--The fact I have not updated this page is actually good news. Recently I have received a few emails asking me for an update. Since I last updated the page I have been on a drug called Aubagio. This oral drug is meant to slow the progression of relapsing/remitting MS. I can say that since I have started this medication I have not had any further relapses, my MRI's in the past three years have not changed and my neurologist has defined my MS as stable. In fact we are not going to do an MRI this year.
The symptoms I have have not changed, some days they are worse than others and probably when I look back over the past couple of years they may have worsened but I still manage. I can walk, I can drive and I can do some moderate exercise! My visual perception causes me to have issues with balance, that is where my cane comes in handy or my husbands hand when we walk or having the person I walk beside walk on my right side not my left.
I have a lot of neuropathic pain, kind of feels like a burning pain from the inside. I get it in my right leg, right arm and the bottoms of my feet. I don't have the pain usually when I wake up in the morning but by mid afternoon it resurrects. There is no currently anything I can take to make it go away. It is more uncomfortable than anything.
I have slowed down a bit and it takes me longer the do the things I used do easily. a lot of household chores have become too much for me, which is kind of funny because I never enjoyed it in the first place--lol! Sadly cooking, which I have always loved to do has become more challenging. So I change the way I do things. Not so easy to train yourself to sit when you usually stand. To ask someone else in the house to help stir the pot because it is too tiring.
These things I can live with, it could be much worse. I am thankful every day that I can still do the thing I do.
March 2016--I have kind of fallen off the grid and I haven't update my "Living with MS' page since February 2015! Reason being is that not a lot has changed in the past year--that is a good thing! My last appointment with my neurologist ended with him telling me that my MS is very stable. No improvement as there is no way to reverse what is, but there does not appear to be any further decline. Although I have tried three new courses of treatment in this past year, the medication that I began 9 months ago now seems to be doing what it is supposed to do--slow MS in it's tracks. I am so thankful for that.
So why did I drop off the grid then, well winter's are particularly hard for me. The colder temperatures seem to exacerbate my pre-existing symptoms, so by March I am just done with overwhelming fatigue. Not the kind of fatigue you can just sleep off, even after a good 8 - 10 hours of sleep I don't feel like I have rested at all. Combined with neuropathy, a pain that makes doing the things I love like crafting and cooking extremely difficult. Please don't get me wrong, I am very thankful that despite having MS now for 29 years, I am still good. So if I am not posting as regularly as I would like or getting to visit all my blogging friends know that is isn't personal just not possible. Looking forward to April and warmer days.
February 2015--I have received so many wonderful email from many of you with support and sharing your stories. I have also had many requests to keep this page up to date with my MS journey. Requests to fill you in on my treatment.
Five years ago I had took it upon myself to have the controversial CCVSI procedure done in New York. Yes there were risks and yes it was expensive but my family took up a fundraiser and made it possible. The procedure went well and over the weeks that followed I felt stronger and more able. This went on for about 6 months,then I noticed that my symptoms were slowly coming back again. Do I regret having the procedure? Not at all, I have to believe that I am in a better place now than I was pre-surgery.
My days can be quite complicated, I am not as strong or as able as I used to be. I am generally fatigued, I get tired very easily, I am dizzy most of the time without even drinking--LOL Standing to do things is a struggle--cooking, housework, crafting. I have to plan my outings carefully, the morning are generally that best and most productive of the day. I need to decide where I am going and plan my route so there is no backtracking and I need to prioritize so what must get done gets done and if I need to abandon something on my list I can. You might think what is the big deal just push yourself and do it. I can't, I have learned that, it only ends up in a complete shut down.
For three years I had Tysabari infusions once a month. Intense stuff but they made me feel good, boosted my energy and held off the disease from getting worse. However, I had to stop them because the risks after three year mark. The risks of getting as infection called PML. I carried a virus in my system called JVC which made my risks of getting PML higher. So back onto needles to prevent the disease from getting worse. After stopping the infusion my immune system is very weakened, where I never got sick with the infusions I tend to pick up everything now. My neurologist started me on a new oral medication called Tecfidera, much lower risk for PML I have been taking it for almost a year now, it isn't without side effects but seems to be doing it's job.
There are days that I want to scream and say why me, but really for the most part I am quite lucky. I can be a good mom, I can care for my family, I can care for myself (most days), I can still walk and drive and I can be happy.
My Story--I was diagnosed with MS in 2003, the doctors felt that I likely have had MS since my late teens. In my early 20's I became a high school teacher and married James. I began to have numbness in my hands and feet that would come and go. A Myelogram was done and the results inconclusive. Feeling better I continued on to have my two children, Ben and Brooklyn, plus continue to teach high school. For the next 10 years I went almost symptom free. Then the numbness came back. Over a period of a few months my symptoms started appearing rapidly. Extreme fatigue set in, difficulty picking things up, dropping things, handwriting became difficult and I was having frequent bouts of L'hermitte's sign (an electrical sensation that runs down the back of the neck and into the limbs). I was referred to a neurologist who did an MRI and it was confirmed I had MS. Not knowing anything about MS I read everything I could trying to understand this disease. What I found out was that I was never going to get better, this was now my life. I had always been a very active person, in my personal life and in my job. Now there was something holding me back. I wanted to keep doing all the things I had always done, but my body was letting me down. Since that time my condition has worsened steadily. I am constantly fatigued, balance and dizziness are an ongoing issue which make the most basic tasks like moving around the house, walking up and down the stairs, and navigating through busy places challenging. I lost hearing in my left ear, have constant pain in my legs and arms, muscle weakness and difficulty walking. To see me you would never guess there was anything wrong with me, but each new day brings new challenges.
