Update on Stem Cells

My first post on this page was about the stem cells I got for my MS. It’s a very expensive process and a personal choice because as of right now it still is not approved in the US so insurance does not cover it.

Ideally you have this procedure, you see improvement and you don’t have to do it again. Looking back I realize that the stem cells probably gave me a boost in energy during the first few months in addition to the other pleasant changes.

15 months later though I am seeing decline in the changes I originally saw. Whether this is due to my MS re-damaging the areas or what I am not sure. I am not a scientist, though I do love my research.

Originally, before my stem cells I hadn’t been able to feel my feet for nearly three years and then less than a week after the stem cells my feet magically reappeared, at least that’s how it felt. I also had moderate back pain in my spine since 1999 or 1998, honestly it was 20 years ago so I am not sure anymore, that was gone as well.

I thought this back pain was from the first car accident I was in but now that the pain is coming back after being gone for almost a year I am wondering if it is actually from the lesion on my spinal cord in the same area. I know I have an old lesion there because they told me that’s probably the reason I had severe MS “hugs” for several months in 2011.

That’s the kicker, so much money spent, so much hope put in because the pain was gone for the first time in 20 years and now, after a little more than a year it’s coming back. The feeling in my feet is slowly going away too. There is still enough there at the moment that I can sense them, but enough lost that I know what’s coming.

Would I do it all over again knowing? Probably, if I had to do it all over, it was a nice break from pain while I had it. Though I feel terrible that support I received to pay for the procedure ended up not being long term.

Nerve Pain, MS and Parenting

They don’t tell you to prepare for the unbearable nerve pain that comes with MS. Apparently it is not one of the “more common” side effects of the disease so count yourself as lucky if you do not get this.

I take Amitriptyline for my dysesthesias, it is an “off label” use for this issue but it has been working for me, more or less. Though the last few days I have had increasing nerve pain that started in my legs only at night and progressively moved to my full body and all day. Yesterday was the worst, it got so bad I was ready to go to the emergency room, and I HATE emergency rooms. I have spent too much of my life in hospitals to go there unless it’s the last resort.

It felt like someone was stabbing every part of my body with little needles, and not just my skin (that’s what happens when my core body temp increases to much, another fun thing with MS) all of my organs too. It is hard to properly describe what it feels like to have your entire body being pricked with needles and how you can feel it in your organs, but it is not hard to explain that this pain changed my level of patience with people, my pets and my kids.

Driving home with my children, I was in so much pain my body was moving in response. My oldest told my husband later that it looked like I was trying to use the force on cars in front of us with my hands while they were still on the steering wheel. I felt my upper body contorting to try and relieve the discomfort, it did not work. The normal bickering of brothers drove me mad and when children tried to hug me goodnight I cringed and had to tell them to stop. My husband held my hand as long as I could stand it while we were watching a show and I finally had to pull away because the sweet, loving gesture of rubbing his thumb on the top of my hand was causing me pain.

I ended up taking an extra pill of Amitriptyline, I normally take 2 but the doctor said I could go up to 3 so I knew that was ok. I also took a Vicodin that I had for my migraines and back/hip pain. Then I put ice packs on my body so I could numb the sensation a bit and finally got to sleep. This morning I am in less pain so I will be increasing my dose temporarily and speaking with my doctor but I have staved off another trip to the ER for today.

It’s hard to explain to children why you are extra snappy on certain days and what the sensation you experience feels like so they can understand. It is also heartbreaking for me to have to tell my kids they can’t touch me because it causes me pain.

 

Vaccinations and the Immune Compromised Public

New York County just banned children in public places if they are not vaccinated for the Measles. Holy cow, please do not start freaking out as I have not even said anything yet.

I am 100% for people making their own choices for their family and their kids, that being said, I am also for not becoming deathly ill because of those people’s choices. I made a comment on Facebook about how I am glad this is the case because people who have immune issues should not have to be subjected to diseases that there are vaccines for when they are going about their daily business.

In case you are unaware, when your immune system is compromised that means even if you were vaccinated for the disease it no longer matters, you are at risk because your immune system does not work the way it is supposed to.

It got so many comments, one person in particular told me I should stay inside my house forever. (Thanks for that lady, I wasn’t starting a fight I was just sharing my personal opinion.) Not once did I name call a person, call them stupid or an idiot or say that their opinion was not valid. Other people did, some were very rude actually and I get that you can be passionate about a subject but if you follow my blog than you know that I want to be a better example for my kids on how we should treat people and I do try to live what I am preaching to my kids.

Another person pointed out, rightly, that I did not choose to have the immune system I am currently blessed with, and the chemo medication I take to keep it from eating my brain. (I am paraphrasing here because I didn’t share why my immune system was compromised or that I take chemo medication.)

MS shows up differently for each person who has it, different medications work for different people and the severity of symptoms ranges widely. For me, MS shows up like a giant a-hole villain who is getting paid to make my life a living nightmare. There are days when I get questioned about why I have a service dog because I am walking normal, there are other days where I probably look like a total drunk and it’s obvious that I could not stand upright without him.

Now I think kids should get vaccinations, I am okay with whatever that looks like; the standard schedule, a longer schedule whichever. A kid just spent 2 months in the hospital for treatment of Tetanus for crying out loud, and I know that there are still people who believe these shots are dangerous but science says that is false, also the kid with tetanus cost $800,000 to cure. The shot is free with insurance!

Now if you are a parent who doesn’t want your child vaccinated, fine, please home school them and keep them in your house, because I just realized it’s your choice to make and people with crap immune systems should not have to worry more or become shut-ins because you don’t want to vaccinate your child.

We as people and/or parents, make choices every day, please be mindful of the entire human population when making choices. I vaccinate my dogs so they don’t get sick, my kids because I love them and want them to be as healthy as they can, myself so I don’t die of something stupid. Also, I don’t drive into oncoming traffic putting other people’s lives at risk because I think it’s a better way to drive.