The First Year with MS
June 24, 2016 5 Comments
Category: MSTags: Fundraising, MS, MS society, MS society junior board, Tysbari, WAlk MS, autoimmune, autoimmune disease, inflammatory disease, ms advocate, ms awareness, ms research, multiple sclerosis, multiple solutions, national MS society, optic neuritis, vision loss
The first time I ever laid eyes on my MRI results I thought I was looking at a Christmas tree lit up with ornaments. Only those ornaments were lesions on my brain and I counted nearly 13 of them. From that day forward I knew that I would spend the rest of my life managing multiple sclerosis…
I spent the first year with MS getting it under control with regular IV steroids both to regain my vision and also as a short term fix so I could safely get pregnant. Initially after diagnosis, my doctor wanted me to start a medication that I would ultimately be on for at least a year but I knew that would mean that our dream of having a child would be put on hold and I wouldn’t let that happen. Since day 1 with MS, I decided I would not let it control my life or keep me from doing the things I wanted to do, and this was certainly no different.
While I was able to protect myself from new lesions while trying to conceive, I knew that I would be at risk for more once I was carrying the baby and could no longer take any medication. The reward, of course, outweighed any consequences in my mind and becoming a mom remained my priority. The best part of being pregnant is that all symptoms of MS dissipate and I felt totally normal for 10 months. It was the greatest gift but I knew that it was short lived and soon enough I would be back to my new life of worrying about MS.
On the day my daughter was born, I started steroids again hoping to fight off the relapse that seemed inevitable after her birth. Instead of starting a medication right away, it was really important to me to breastfeed (if even for the first 3 months) and the steroids essentially “covered” me so I could do that. Luckily, only manageable symptoms from the past were back, like blurred vision, numbness and tingling, after her birth so I thought I was in the clear. But, my recent MRI showed new lesions on both sides of my brain – news you certainly don’t want to hear. That day I felt depleted for the first time in months. Life was just starting to feel wonderful again – we had a beautiful, healthy baby who made me happier than I’d ever been. The last thing I wanted to hear was that things could go down hill. I decided to take that day to be sad, and picked up the next day where I left off.
Day 1 with Chloe as I underwent my first dose of steroids
Now I’m about to begin the next step in this journey where I proactively begin to stop the progression with Tysabri, a new drug that’s supposed to be the best (more on this later). This drug will hopefully get my MS under control, so I’m optimistic. I’m also nervous because I don’t know how my body will react to it. I plan to be on this drug for 12-18 months so we can fully gauge the effectiveness of it and monitor the results. My next MRI is scheduled for December 2016 so that will be my strongest indication on whether any new lesions have formed. Stay tuned..
Jeremy Still
October 29, 2016 at 9:31 pm
You mentioned you knew you were protecting yourself from new lesions…how? I’m on Copaxone, but I’m not assuming it guarantees no more lesions. ShouldI?
wellandstrongwithms
October 30, 2016 at 9:59 am
I was undergoing steroids in an attempt to prohibit new lesions while trying to get pregnant. It’s certainly not foul proof but its a good short-term solution when you’re going off of medications. Unfortunately medications, like Copaxone, are not 100% effective. I think Copaxone has a 30% effectiveness rate so you are unfortunately susceptible to new lesions (am I with Tysabri too).
Debra Kaiser
February 2, 2017 at 5:11 pm
My MS symptoms were actually caused by Mercury toxicity. In 1999, after having two silver fillings drilled out, I immediately suffered from killer headaches, skin tingling, vision problems, foot-leg-body numbness, fatigue and other neurological and mobility problems. I was diagnosed with MS, but later realized that my problems were from Mercury toxicity from my dental amalgams (which were 50% Mercury). By 2001, after heavy metal detoxification, the last of my symptoms faded away and I have experienced great health and a normal lifestyle since. Praise God! You can find out all of the details of my recovery along with other helpful information at http://www.hopeandhealingbook.com. The truth is that countless people have been cured of neurological problems by ridding their bodies of heavy metals.
– Yours in Faith & Health, Debra Kaiser.
wellandstrongwithms
February 6, 2017 at 5:23 am
Hi Debra! Thanks for saying hi and introducing yourself.. That’s so crazy about the heavy metals! I have heard that before but never knew anyone who experienced it first-hand.. thanks for sharing. I’l be sure to check out your site and learn more!
Roxie
July 15, 2017 at 1:47 pm
Hi Angie, you mentioned that after you had your daughter old symptoms came back but were manageable… was this considered a relapse and were the new lesions causing this?. Tysabri has been my first and only drug since being dx in dec 2015 after I had optic neuritis in my left eye. Recently in mid-June I stayed outside in 90 degree weather all day which is something I never do bc I’m not a summer person (even before ms).My left eye got blurry again and I called dr. Vision was 20/30 and is normally 20/20. Got the 5 days of steroid treatments. Neuro optomologist believes it is a new lesion maybe on top of an old one but he cannot tell because there was no Mri of my optic nerve just brain and spinal cord. Neither him or my neurologist think I need to get an MRI now because it was minor disease activity. I have to admit I am worried bc I expected to be relapse free for longer. All I can think is at least it was not a new symptom or my “good” eye but still…