I'm not sure how many of you know what MS is all about so I will provide a quick explanation. It is an autoimmune disease where the immune system gets confused and attacks its own central nervous system, destroying myelin sheath, the protective coating for our nerves. This basically causes a short-circuit, interrupting communication throughout the CNS.
I have been bound and determined to do more than simply accept my tragic fate. I have chosen not to sit idly by and suffer from a life-long, incurable beast. This disease historically only progress downward. I will fight!
My extensive research has lead me to the discovery of a procedure called Hematopoietic Stem Cell Transplantation (HSCT), where high dose chemotherapy is used in congruence with one's own stem cells to "reboot" the immune system.
HSCT erases the immune system's memory and basically hits the "reset button". This stops the underlying MS disease activity and allows the body a chance to repair itself.
We found insurance companies that will help cover some of the costs and in November we are signing me up for it. We will still have to however pay for deductibles and the remainder of what the insurance don’t cost.
I am asking for help with donations from anyone who can help. It will go towards medical bills, air fare to get to Chicago, and housing while I’m there for 5 to 8 weeks. Also help with daycare at home for the girls!
Anything you can do to help me will be greatly appreciated! Please read my story and share it!
How my MS started:
Oh where do I begin, let's start with when the words came out of my sisters mouth (it could be MS?) I said no way, but in the back of my mind I was thinking, "could it be?". This was in 2009. In 2008, I was 25 when I had my daughter, Willow. I was the happiest mom in the world. Around a year or so after Willow was born, I had gotten sick and laid in bed for a week or so. I noticed that the bottom right side of my face, like the jaw area, and right side of my lips had gone numb. I felt like I had just gotten back from the dentist! I thought, wow, that's strange, and I didn't really make anything of it. I am very stubborn and hated going to the doctor, so I just kept doing what I had been doing. About a month or so goes by, and it's still kind of numb. I thought I should go in and get checked out, something isn't right. Did I have a stroke and not know it? Everyone told me I should have gone in, but I'm just too stubborn! I went to the ER and I'm getting all checked out. I told them I was sick and in bed for about a week and so they just played it off and told me that the numbness was most likely caused from a pinched nerve from being in bed. Everything else looked good! They thought I was good to go so I went on my way! It took about 2 to 3 months for the numbness in my face to fully go away. I thought, ok, cool, I can drink a glass of water now without it feeling weird!!!
Everything was going good until after I had my second daughter, Brook. I had her on 7/7/2011. Around March of 2012, I noticed my feet starting to hurt. I'm a night stocker at our local Walmart, so I'm on my feet all night, so I didn't think anything of it. In May, my feet had been hurting so bad that it felt like I was walking on straight bone. I even went as far as wearing slippers to work because they hurt so badly. My co-worker, Rita, told me to go in for probably the 100th time, so I finally listened. While in the emergency room, I was getting looked over and was telling them how my feet hurt, and by that time my legs were a little numb. I brought up how after I had Willow; part of my face went numb. Well I guess that doctor that night was on his game because he had left the room to go consult with to the neurologist that was on call. He came back in the room and told me that they wanted to get an MRI done and what they were looking for. Yes, MS was a concern.
Trust me, I was scared to death. What if it is MS? I have two beautiful little girls that need me for a long time. This can't be happening to me right now. I didn't show I was scared, though. I'm a strong person and know how to be tough. If there's one thing I learned growing up on a farm with my dad, he was going to make dammed sure I was tough. Well, he did a good job of it!
The visit with the ER goes on, and I was rolled in to get an MRI done! Never had one done before, so I didn't know what to expect. Lots of loud noise but at least I got to wear head phones and listen to my favorite radio station. They are always playing some sort of country song to brighten up anyone's day.
After the MRI, I got back to the room in the ER where my mom had been waiting. After a while, the doctor comes back in and said he had gone over it and wanted me to make an appointment to go see the neurologist the following day. He asked me if I could make it to a 12 o'clock appointment, since the neurologist was willing to see me on his lunch. I said ok, not a problem, I'm there, something must really be wrong.
So my husband and I go in the next day and are talking to the neurologist about MS and everything else. He didn't fully diagnose me yet but we had a feeling!! He wanted me to do 3 days' worth of a steroid IV infusion. So I do the 3 days of them, mind you I still kind of have a hate for needles! My feet are still killing me at this point but after a week or so of getting the steroids my feet started to get some feeling and didn't hurt as bad. But that didn't stop me from going back to see my Neurologist, he wasn't quite done with me yet!!! About 6 months after that he sent me in for another MRI, a more in depth one, one without contrast and one with contrast.
That was December of 2012, my second MRI ever in my life! I make the appointment on December 21st 2012 it was a Friday, to get my results. I get there and talk with the neurologist and that's when I get diagnosed with MS! I was already preparing myself for it, I mean come on who wouldn't prepare themselves for it, after all I have gone through so far I kind of had the feeling I did have it. So I stayed strong, I don't think I let one tear run down my face. Well, not till I got to the car, that's when they started rolling down.
My husband Chris was not at this appointment with me, due to he was at home with the little ones. We had no one to watch them for this appointment, so it was just me. I must have sat there in the parking garage in my car and cried for a good 20 minutes or so. I finally told myself, come on Cass, pull it together. You have 2 girls and a husband at home who need you. By this time I have gotten a few texts from Chris wondering how everything was going so I decided to write him back. In my text all I had wrote was "Your wife is officially broken" and that was it.
Of course he's going to call me, I held it together and told him, he took it a lot better than me! I get home and we talk about it, some more tears and everything else that comes with news like this. We stayed strong and held it together for the girls, to keep our family strong. I started a medication in February 2013 called Avonex, a once a week injection into your leg muscle. It didn't sound like fun at all. Me, having to give myself a shot, there's no way. The first 4 injections are all a different dose, so they have to be done with a needle syringe so I could work up to the full dose. Let's just say I had Rita come give me my shot, there was no way I could do it myself. She is awesome! After the first 4 injections, I moved on to the pin where you just have to push the button, easy, right? Not for me, I did it myself a few times, but when I hit the button I jumped and seemed like I always had to push the needle back in a little bit. Let's just say I gave up and had to have Chris do it for me. Being the loving husband he is, he had no problem poking me once a week! And I love him for doing it.
Time goes on; I end up getting a new neurologist around June of 2013. I ended up having another flare up in September of 2013, where it felt like I was walking on bone again, and go through another 3 days of steroid infusions. At this time my new neurologist put me on a nerve medication that would also help with the pain in my feet. With that medication, it dulls the pain, but in no way stops the pain. It helps in managing with day to day necessity.
My legs have never really come un-numb, if anything they keep getting worse. As of now my body is numb from the upper ribs down to my feet. The only thing that is helping me with the pain is my nerve medication, and that just dulls it. I feel like someone is constantly squeezing my midsection, giving me the tightest hug they can. My legs feel like they are either on fire or ice cold all the time, the best way I can explain it is I feel like someone rubbed icy hot all over them, and the feeling of that never goes away. My right leg also feels very weak, like I have no strength in it. I am constantly swaying and fumbling as I walk, as if I'm drunk. When I take a shower, hot water makes it way worse, my legs feel so cold so I turn the hot water up just to feel some warmth, but I don't dare let that water touch the upper part of my body. It would be way too hot at that point. What I would give to have just one normal shower where I could feel normal, maybe be able to shave my legs without all the tingling feeling too:
They tell me there's no cure for MS, it's a chronic disease. Everyone's symptoms are different, and everyone progresses at a different rate. Still being kind of new to this, I thought, let's just see what happens. We go on, day to day, being as happy as I can for the girls, still working graveyard, although I did cut back to part time. Let's take the injections; it's supposed to slow the progress down.
I don't give up that easy. I did a lot of research on a lot of different things. I didn't really find anything other then what the doctor was saying, until one day when a dear friend, Sarah, tagged me in a Facebook post (yeah I know what you're thinking, it's a post from Facebook, how true could it be!) about something called Hematopoietic Stem Cell Transplantation (HSCT). I did my research on it, and I found Dr. Burt.
This amazing treatment called (HSCT) could give me so much of my life back. I want to be able to go on long walks with my kids, or go outside so I can go puddle jumping with my girls. As of now, that is very difficult for me to do. I get exhausted way too fast. I want to be able to teach my girls about life without fumbling over things and not being able to keep up. It's just not fair to my kids. This treatment could give me a little bit of my life back.
Why are we not being aware of this type of treatment? I know it's not classified as a cure as of now, but it could be. Even if it stops the progression for just 10 years, that's 10 more years, I will have with my family. All I can think about is I have to get this done, my girls need me, they are still so young and have so much to learn from their mother.
This is some info I have on HSCT that I got from some articles. It will help better explain what it is.
In 1996 Dr. Burt performed America's first HSCT in multiple sclerosis at Northwestern University in Chicago.
In 1997 Dr. Burt performed America's first for Rheumatoid arthritis, Systemic Lupus Erythematosus.
In September 2000, the Division of Immunotherapy, under the Department of Medicine was formed. It is headed by Dr.Richard Burt, an early pioneer in the field. The division has performed more than 200 transplants for autoimmune diseases and is the world leader in the field at this time.
Hematopoietic stem cell transplantation (HSCT) is the transplantation of blood stem cells derived from the bone marrow. HSCT allows administration of dose - intensive systemic chemotherapy, a nonmyeloablative conditioning regimen is used for our protocols. A small number of stem cells can replicate to populate a patient's entire hematopoietic system, therefore primary function of stem cell reinfusion is to restore the ablated immune system and expedite recovery from conditioning.
Types of Stem Cell Transplants
Patients use their own blood stem cells.
An identical HLA matched full sibling's stem cells or umbilical cord blood stem cells are used.
Donor of stem cells is an identical twin.
Phase I "” Pre Transplant Testing
Pre transplant testing "” MRI, CT scans, blood work, pulmonary function tests, etc
(Friday) you are admitted to the hospital overnight for chemotherapy "” you will be discharged the next day after fluid hydration
Phase II "” Mobilization
You will be outpatient and give yourself the shots to grow stem cells (neupogen). Your labs will be checked.
Phase III "” Harvest
We collect your stem cells through process call pheresis. This is usually done on Tuesday, Wednesday. When you are done, you can go home.
Phase IV "” Conditioning/Transplant!
Thursday "” you are admitted to the hospital for your transplant. The first six days you will be getting IV fluids, four days of chemotherapy.
You receive your stem cells "” very similar to blood transfusion.
We wait for your stem cells to grow. You stay in the hospital during this time.
And that is just a overview on how it would go as longs as everything went smooth.
So I read up on HSCT it sounds amazing, this is something I have to do. One way or another I will find a way from Forest Grove, Oregon to Chicago, Illinois.
This is an article I found from 2011 on HSCT I think it better explains how it works.
March 21, 2011 Replacing bone marrow with the body's own stem cells may help patients with aggressive forms of multiple sclerosis (MS) go for years without seeing their disease progress, a new study shows.
Researchers in Greece are following a group of 35 patients who received experimental stem cell transplants for multiple sclerosis.
By purposefully wiping out the immune cells in a patient's bone marrow with chemotherapy and then repopulating it with healthy stem cells, researchers hope the body's immune system will stop attacking its own nerves, which eventually become so damaged from MS that they can't properly transmit signals.
That damage can lead to wide-ranging troubles, including problems with vision, speech, weakness, coordination of movement, numbness, and pain.
According to the National Multiple Sclerosis Society, 400,000 Americans and 2.1 million people worldwide have MS.
Following Stem Cell Transplants in MS
An average of 11 years after their transplants, 25% of the patients in Greece have not seen their disease progress, the researchers report.
Among patients with active lesions on MRI scans before their transplants, indicating that they were in an inflammatory phase of the disease, 44% have not progressed.
Only 10% of patients who went into the study without evidence of ongoing inflammation were able to remain disease free.
Two patients died from transplant-related complications.
"Keeping that in mind, our feeling is that stem cell transplants may benefit people with rapidly progressive MS," says study researcher Vasilios Kimiskidis, MD, of Aristotle University of Thessaloniki Medical School, Greece, in a news release.
"This is not a therapy for the general population of people with MS but should be reserved for aggressive cases that are still in the inflammatory phase of the disease," he says.
The study is published in journal Neurology.
"This is the first long-term paper that's being published on this," says Richard Nash, MD, an oncologist and member of the Fred Hutchinson Cancer Research Center in Seattle.
Nash is part of a National Institutes of Health trial of stem cell transplants for MS, but he was not involved in the Greek study.
"When we're transplanting patients with autoimmu
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