Help Leslie Beat Multiple Sclerosis
We had heard the term MS many times, but none of us really knew what it meant- not even Mom. We had to do a little research to really understand it, and this is what we’ve found:
The name ‘multiple sclerosis’ describes multiple scars or lesions, as seen on the brain and spinal cord. MS works by causing the patient’s own immune system to attack and destroy myelin, an insulating substance in the body that sheathes axons, which are the fibers the body’s nervous system commands travel through. When the myelin is lost, the brain cannot effectively communicate with the body.
Mom was officially diagnosed with Relapsing-Remitting MS (RRMS) This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear.
So what does this mean? In some cases, MS attacks the spine and outer appendages of the body. With Mom, her lesions are all in her brain, affecting her motor skills and cognition. While Mom’s case may seem more aggressive than expected, we are learning that there were many red flags that were missed. About 7 years ago, her yearly checkup showed that she was seriously deficient in Vitamin D. In 2012, she was diagnosed with panuveitis, a general type of inflammation that attacks all areas of the eye, including the retina. This was causing everything to seem intense and bright, and it made her sick to her stomach. Panuveitis was a trigger to look for other things that cause inflammation, including HIV, cancer, and MS. Both of these have been known to be warning signs of MS.
Since being diagnosed with MS, we have noticed new and worsening symptoms in Mom. She struggles getting her words out. It seems like she is mid-sentence and knows what word she wants to say, but has an issue physically saying it, like it gets stuck in her mouth. Recently, she is having problems walking. During this past year, she has had 6 MRIs, 5 of which have showed new or worse lesions in her brain. She was first put on the injectible medication Copaxone and then Rebif but both have failed. We now understand how aggressive Mom's MS is, and that her best chance at stopping this horrible disease is a procedure called Hematopoietic Stem Cell Therapy (HSCT). HSCT is a procedure where her own stem cells will be harvested. She will then be given medications that will essentially kill her malfunctioning immune system. Her stem cells will then be given back to her to help kickstart a new immune system. This new procedure has been amazingly effective at not only sending MS into remission but also helping to reverse symptoms. We are working to save up the $55,000 she needs for the procedure before this disease can do more damage but we need your help.
We are reaching out to all of you to ask for your help to get our mom back. We really appreciate any contribution, big or small.
-Lauren, Kate, and Joel
We arrived Sunday March 27. We were driven from the airport directly to the apartment where Mom and Scott will be staying for the next month (I am only here until Saturday, sadly). It was late when we got in, so we almost immediately went to bed. The following day, Mom and Scott went for the final tests and we met the rest of the group she will be with for the month. All of these people are so amazing and I'm seriously in love with all of them! Monday was an exhausting day for the two of them, so we had dinner and went to bed.
Tuesday and Wednesday were days that filled me with anxiety- we started the first round of chemo! Mom is seriously a champion! She experienced a little bit of nausea and a headache (but luckily a nice long nap took care of that!) but is recovering nicely today. Each chemo session took about 6 hours, but we got to chat with all the other patients and carers there.
Today, Mom is starting on her shots (filgrastim) which stimulates the production of stem cells in her bone marrow. Scott and I went to Walmart to get a bunch of food (and I'm sure Mom enjoyed a little alone time :) ) and we've been relaxing ever since.
Next week, Mom has another round of chemo to go through, but if this week is any indication of how the rest will go, she is going to beat this thing once and for all!
Mom, Scott, and myself have all received some MAJOR haircuts (pictures are posted on mom's blog, which she's updating as she can- www.myfighttokeepsmyelin.com), and my brother Joel has shaved MOM into his hair in support. Kate, as always, has been super supportive and has called quite a few times since we have been here!
Thank you so much for your donations, thoughts, prayers, good vibes, and good words!
Thanks again to everyone for the kind words and generous support. We would be nowhere without everyone's help!!
Again - thanks to everyone that has contributed to the fund. We are over 8% now.
There are much more aggressive treatments now, she should seek out a good MS Neuro to discuss further options. I have Tumefactive Primary Progressive MS, multitude of brain and spinal lesions. I also failed on many of the first line injection therapies and Tysabri. I was doing a very rare procedure (Plasmapheresis) for over 7 yrs due to the aggressive nature of my form of MS just to maintain some stability. I just recently started the new tx Ocrevus, at this time my final option until something else comes out. Lemtrada is an amazing option, 5 rounds first year, 2-3 the next then done! Has she been given any of these options?? HSCT is an expensive option, also not guaranteed. It's great you're able to raise the funds but definitely shouldn't close off all other options after only trying 2 very old therapies, the dmds are meant to slow progression which is something you'll want to do before it does start presenting in the spine which is where they do not want to see. Anyhow I wish you the best, just wanted to leave you some extra info. In this link there's another link with all the current dmd options. Good luck! http://justkrazed.com/understanding-multiple-sclerosis/