Tuesday, August 28, 2018
48 Days to Go!
I'm really looking forward to starting HSCT in 48 days! To let you all know just how strange MS is/can be, I got my MRI results back last week and I have not had any disease progression (no new new lesions) since my last MRI 2.5 years ago. It's actually been longer than that since I've had disease progression. I have not taken medication in over 3 years, which was ineffective anyway. The only thing that has changed with my disease is my disability. That keeps getting worse in spite of stable state of the disease itself. Here are my MRI reports to show you what MS looks like on me. Please try not to notice my back according to these reports is falling apart. :)
Friday, August 10, 2018
Blog Ressurection Inaugural Post - My Journey with Multiple Sclerosis that Led Me to HSCT
I'm bringing back the blog of essentially my youth. I started this bizatch in 2006, attempted to reboot it in late 2010/early 2011, and now here I am back in 2018, so right on track! Oh and don't you worry! I left all previous posts intact, so you could learn more about my more youthful self. :)
I will now be using this blog to document my MS (Multiple Sclerosis) and HSCT (Autologous Hematopoietic Stem Cell Transplant) experience (I will explain HSCT later in this post.). I am scheduled to start HSCT on October 15, 2018. This is blog post serves as a documented history of my experience with MS, what led me to HSCT, and what HSCT is.
History of My Multiple Sclerosis...
What I did/do to fight this disease...
I went straight to the vitamin store with my mom after I was diagnosed in 2012 and asked them to give me everything they had to help me with MS and I didn't care what the cost was. I take 18 different vitamins to the tune of 31 pills a day to keep my vitamin levels in the normal to good range. I get blood tested (lots and lots of testing) often to track how I'm doing and to see if I need change out any vitamins to help get high or low level items back on track. I'm proud to say I have gotten my vitamin D level to beyond "normal". I am in the "good" zone with that. Vitamin D is very important for everyone especially those of us with MS.
In 2012, I started exercising at home with my Xbox to keep moving. In 2014, a good friend suggested I give CrossFit a try. I had heard mixed reviews and didn't know how I would do with no A/C. I tried it for the first time in June of 2014. It wasn't easy, but CrossFit allows everyone to work at their own level, so I started out small doing what I could do. I was very wobbly (MS balance issues and weak core strength) and struggled to get the movements, but I eventually got them. My wonderful husband, Steven, attended with me. We started going 3-4 days a week for our first year and half or so and then I started to realize how much this type of working out was helping me, so we added a fifth day. I also started mixing CrossFit and Olympic weightlifting (3 days of CrossFit and 2 days of Olympic weightlifting). In the last six months, it was obvious that without working out I do not move as well, so we added a sixth day. I now do CrossFit three days a week and Olympic weightlifting three days a week and am no longer wobbly like I was when I started. It's is truly amazing with great coaches what a girl with MS that includes a severe walking disability can do! Sometimes my movements are a little more strict than I would like and less fluid than others, but I do it! I am in the best shape of my life because of this! I just can't walk much.
Next, I started tackling my eating in 2015. I spoke to a dietician to eat better to manage MS. As a result, I cleaned up my diet and my eating got a lot better. I LOVE food, so the diet part is not 100% perfect, but much better than it was. It is fascinating how much food can affect you. I did not realize this until after I cleaned up my diet. I really do believe your gut health is one of the most important factors in staying healthy overall.
This is where HSCT comes in...
Sadly, with all of this, my walking continues to decline.
There are no drugs that will bring back my walking ability only ONE drug to MAYBE slow the progression of MS. The drugs have a lot of side effects and I'm not going to risk getting liver disease or something worse for a drug with very low efficacy. Personally, I feel like I have the disease under control, but I cannot touch the disability.
Recently, for the second time I asked my doctor how I could be considered relapsing remitting for MS if I have not had a relapse since 2012 when the acute attack happened and I got better, but my walking ability continues to decline. He agreed that I fit best as Primary Progressive MS. Regardless, I'm definitely progressing and not relapsing.
I found myself in a desperate state three weeks ago when I came to terms with the fact that I'm getting progressively worse and I am starting to decline more rapidly. I cannot travel like I want and daily life requires planning. I looked online for help with progressive MS and found almost nothing. A lot of times physical therapy is recommended, but when I went years back and told them what I do for working out there was nothing more they could offer me because I was already doing it all. After I started panicking a few weeks ago, I and joined a FB (Facebook) private room for people with Primary Progressive MS. The room's admin had HSCT last year and said it was the best thing he had ever done. He suggested other rooms to join on FB, which I did including a room about HSCT and it seems HSCT is my only option for doing anything about my disease. I applied for HSCT at Clinica Ruiz in Mexico (one of two clinics in the world available who is willing to work with progressive MS) that day for treatment, got a response from Clinica Ruiz the next day, and booked it on the spot. This procedure is very expensive, but I didn't care because I have no other options. I took out a huge loan to pay for this and cannot really afford to pay it back, which is why I am fundraising for this.
Below is the link for my fundraising page.
Dena's Go Fund Me Page
Here is the link to Clinica Ruiz where I am starting my HSCT treatment on October 15, 2018:
https://hsctmexico.com/
The information below is from their website, which explains what I am doing.
What we will do to treat your condition in Clinica Ruiz, is remove auto-toxic immune cells from your system using both pharmacological as well as biotechnological drugs, followed by reinfusion of healthy precursor hematopoietic stem cells, known as the autograft, to begin producing new immune lymphocytes that will not attack cells or tissues of the body.
In an early step of the treatment process, we will mobilize hematopoietic stem cells to your peripheral blood, and then harvest them by means of apheresis; a non-surgical procedure similar to dialysis where a patient’s blood is passed through a filtering machine by IV. Most patients can collect enough stem cells in a single sitting, but occasionally more than a single day may be required for the apheresis procedure.
After your stem cells have been collected, chemotherapy is administered to further eliminate immune cells responsible for the underlying autoimmune disease. Since drugs cannot selectively destroy auto-toxic immune cells, the only way to assure their removal is by wiping out all forms of dividing immune cells. This is why you will experience a temporary transient immunodeficiency during which you will have to undertake special precautions to avoid and prevent infection.
When the cleaning of the immune cells is completed, your hematopoietic stem cell autograft will be retrieved from storage and infused back into your bloodstream. Stem cells have the ability to naturally “home” into your bone marrow and start dividing again in a healthy manner to repopulate your system with new immune cells. This is known as engraftment.
After a period of time your immune system will be restored with healthy cells, and devoid of auto-toxic cells. The aim of the entire HSCT treatment process is to stop the immune system from causing damage of self.
All immune cells in the body originate from a common progenitor, known as a hematopoietic stem cell (HSC) found in the bone marrow. As the HSC divides, it gives rise to a wide diversity of immune cell repertoire that all serve specific immune functions. Many of these immune cells, known as lymphocytes, are capable of recognizing and defending against foreign pathogens that enter the body.
For an, as yet, unknown reason, some of the lymphocyte immune cells develop a corrupted memory in which they become self-intolerant and attack & damage different cells and tissues of the body. In the same manner as normal cells divide, so does the mutant auto-toxic cell clone, giving rise to a large population of autoreactive cells that mediate damage of different normal structures.
Autoimmune damage of myelin is associated to MS, NMO, CIDP and TM. This is the fundamental mechanism that underlies autoimmune disease and using chemotherapy to eliminate these self-intolerant auto-toxic lymphocytes is the key to also halting the underlying autoimmune disease. The immune cells eliminated from the body are eventually replaced with new immune cells created in the bone marrow, which do not contain toxic corrupted cells, thereby halting the underlying disease activity.
The aim of the entire HSCT treatment process is to stop the immune system from causing damage of the myelin so that proper electrical conduction within the nervous system is restored. In addition to the halting of the underlying autoimmune disease, the reinstatement of appropriate healthy signaling from nerves to muscles often results in clinical and symptomatic improvement.
I will now be using this blog to document my MS (Multiple Sclerosis) and HSCT (Autologous Hematopoietic Stem Cell Transplant) experience (I will explain HSCT later in this post.). I am scheduled to start HSCT on October 15, 2018. This is blog post serves as a documented history of my experience with MS, what led me to HSCT, and what HSCT is.
History of My Multiple Sclerosis...
- My first encounter with MS was likely in 2008, but I would have never thought numb feet after a run was a sign of a significant autoimmune disease. The numbness lasted for a couple days and went away.
- I got numb feet again in 2009 after walking in the mall in heels for two hours. In this case, I thought my feet were numb because I stupidly chose to walk for two hours in heels. That numbness lasted a week and went away.
- In 2010, I was training for a marathon. Each time my hips would feel tight and cause issues with running, I thought I had a running issue. The Marine Corps marathon I ran in 2010 was really tough especially the last 13 miles. I had to stop and stretch about every quarter mile. My legs just weren't right. By the time I got to the finish line I could barely walk and kept tripping.
- In late 2011, I could only run a couple miles before my legs would not work.
- I stopped running at the end of 2011 because I could not do it any longer.
- I thought about getting an MRI to see if I had an issue with my legs, but didn't want to spend the $1,800 it would have cost me at that time.
- Fast forward to the beginning of 2012 when all hell broke loose. The left side of the trunk of my body went numb, I lost partial hearing in my left ear, and started to notice my legs were hard to lift up and felt like they weighed a ton. I went to see my general practitioner and he seemed very concerned and said I needed to see a neurologist. I made an appointment with a neurologist who scheduled an MRI. Days before the MRI my hearing came back after being partially impaired for about a month. That's when I was like, "Oh shit! I have a serious issue!!!".
- The MRI showed lesions all over my brain and cervical spine, which made me positive for having MS. I was first diagnosed with Relapsing Remitting MS, but I have not had another relapse since my acute attack in 2012.
- It's a long story, but I left my first neurologist who seemed to have little interest in listening to me and helping me after she had me on Copaxone (disease modifying therapy) for three years. That disease modifying therapy was not effective after the first two years, but my not good doctor left me on it for an additional year. I suppose she needed it for her drug studies. Most neurologists would take a patient off an ineffective drug after two years. Anyway, I left my neurologist and went with a different one who listens to me and didn't freak out when I said I wanted to manage this disease with vitamins, diet and exercise.
- Today, I'm lucky if I can walk a continuous quarter mile.
What I did/do to fight this disease...
I went straight to the vitamin store with my mom after I was diagnosed in 2012 and asked them to give me everything they had to help me with MS and I didn't care what the cost was. I take 18 different vitamins to the tune of 31 pills a day to keep my vitamin levels in the normal to good range. I get blood tested (lots and lots of testing) often to track how I'm doing and to see if I need change out any vitamins to help get high or low level items back on track. I'm proud to say I have gotten my vitamin D level to beyond "normal". I am in the "good" zone with that. Vitamin D is very important for everyone especially those of us with MS.
In 2012, I started exercising at home with my Xbox to keep moving. In 2014, a good friend suggested I give CrossFit a try. I had heard mixed reviews and didn't know how I would do with no A/C. I tried it for the first time in June of 2014. It wasn't easy, but CrossFit allows everyone to work at their own level, so I started out small doing what I could do. I was very wobbly (MS balance issues and weak core strength) and struggled to get the movements, but I eventually got them. My wonderful husband, Steven, attended with me. We started going 3-4 days a week for our first year and half or so and then I started to realize how much this type of working out was helping me, so we added a fifth day. I also started mixing CrossFit and Olympic weightlifting (3 days of CrossFit and 2 days of Olympic weightlifting). In the last six months, it was obvious that without working out I do not move as well, so we added a sixth day. I now do CrossFit three days a week and Olympic weightlifting three days a week and am no longer wobbly like I was when I started. It's is truly amazing with great coaches what a girl with MS that includes a severe walking disability can do! Sometimes my movements are a little more strict than I would like and less fluid than others, but I do it! I am in the best shape of my life because of this! I just can't walk much.
Next, I started tackling my eating in 2015. I spoke to a dietician to eat better to manage MS. As a result, I cleaned up my diet and my eating got a lot better. I LOVE food, so the diet part is not 100% perfect, but much better than it was. It is fascinating how much food can affect you. I did not realize this until after I cleaned up my diet. I really do believe your gut health is one of the most important factors in staying healthy overall.
This is where HSCT comes in...
Sadly, with all of this, my walking continues to decline.
There are no drugs that will bring back my walking ability only ONE drug to MAYBE slow the progression of MS. The drugs have a lot of side effects and I'm not going to risk getting liver disease or something worse for a drug with very low efficacy. Personally, I feel like I have the disease under control, but I cannot touch the disability.
Recently, for the second time I asked my doctor how I could be considered relapsing remitting for MS if I have not had a relapse since 2012 when the acute attack happened and I got better, but my walking ability continues to decline. He agreed that I fit best as Primary Progressive MS. Regardless, I'm definitely progressing and not relapsing.
I found myself in a desperate state three weeks ago when I came to terms with the fact that I'm getting progressively worse and I am starting to decline more rapidly. I cannot travel like I want and daily life requires planning. I looked online for help with progressive MS and found almost nothing. A lot of times physical therapy is recommended, but when I went years back and told them what I do for working out there was nothing more they could offer me because I was already doing it all. After I started panicking a few weeks ago, I and joined a FB (Facebook) private room for people with Primary Progressive MS. The room's admin had HSCT last year and said it was the best thing he had ever done. He suggested other rooms to join on FB, which I did including a room about HSCT and it seems HSCT is my only option for doing anything about my disease. I applied for HSCT at Clinica Ruiz in Mexico (one of two clinics in the world available who is willing to work with progressive MS) that day for treatment, got a response from Clinica Ruiz the next day, and booked it on the spot. This procedure is very expensive, but I didn't care because I have no other options. I took out a huge loan to pay for this and cannot really afford to pay it back, which is why I am fundraising for this.
Below is the link for my fundraising page.
Dena's Go Fund Me Page
Here is the link to Clinica Ruiz where I am starting my HSCT treatment on October 15, 2018:
https://hsctmexico.com/
The information below is from their website, which explains what I am doing.
What happens during HSCT?
What we will do to treat your condition in Clinica Ruiz, is remove auto-toxic immune cells from your system using both pharmacological as well as biotechnological drugs, followed by reinfusion of healthy precursor hematopoietic stem cells, known as the autograft, to begin producing new immune lymphocytes that will not attack cells or tissues of the body.
In an early step of the treatment process, we will mobilize hematopoietic stem cells to your peripheral blood, and then harvest them by means of apheresis; a non-surgical procedure similar to dialysis where a patient’s blood is passed through a filtering machine by IV. Most patients can collect enough stem cells in a single sitting, but occasionally more than a single day may be required for the apheresis procedure.
After your stem cells have been collected, chemotherapy is administered to further eliminate immune cells responsible for the underlying autoimmune disease. Since drugs cannot selectively destroy auto-toxic immune cells, the only way to assure their removal is by wiping out all forms of dividing immune cells. This is why you will experience a temporary transient immunodeficiency during which you will have to undertake special precautions to avoid and prevent infection.
When the cleaning of the immune cells is completed, your hematopoietic stem cell autograft will be retrieved from storage and infused back into your bloodstream. Stem cells have the ability to naturally “home” into your bone marrow and start dividing again in a healthy manner to repopulate your system with new immune cells. This is known as engraftment.
After a period of time your immune system will be restored with healthy cells, and devoid of auto-toxic cells. The aim of the entire HSCT treatment process is to stop the immune system from causing damage of self.
How does HSCT work?
All immune cells in the body originate from a common progenitor, known as a hematopoietic stem cell (HSC) found in the bone marrow. As the HSC divides, it gives rise to a wide diversity of immune cell repertoire that all serve specific immune functions. Many of these immune cells, known as lymphocytes, are capable of recognizing and defending against foreign pathogens that enter the body.
For an, as yet, unknown reason, some of the lymphocyte immune cells develop a corrupted memory in which they become self-intolerant and attack & damage different cells and tissues of the body. In the same manner as normal cells divide, so does the mutant auto-toxic cell clone, giving rise to a large population of autoreactive cells that mediate damage of different normal structures.
Autoimmune damage of myelin is associated to MS, NMO, CIDP and TM. This is the fundamental mechanism that underlies autoimmune disease and using chemotherapy to eliminate these self-intolerant auto-toxic lymphocytes is the key to also halting the underlying autoimmune disease. The immune cells eliminated from the body are eventually replaced with new immune cells created in the bone marrow, which do not contain toxic corrupted cells, thereby halting the underlying disease activity.
What are the benefits of HSCT?
The aim of the entire HSCT treatment process is to stop the immune system from causing damage of the myelin so that proper electrical conduction within the nervous system is restored. In addition to the halting of the underlying autoimmune disease, the reinstatement of appropriate healthy signaling from nerves to muscles often results in clinical and symptomatic improvement.
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