MS Hugs, Banding, Chest Pain

Before I was diagnosed with MS officially I had been having severe chest pressure frequently. When I was in high school I had a heart condition that required use of beta blockers. The first thing I thought when I started having chest pressure was that it was my heart again.

No, I did not go to the ER, I hate hospitals, I spend way too much time at medical facilities and doctor’s office. Instead, I made an appointment with my cardiologist. Several months of testing, EKG, ECG, Stress Test, 30 day heart monitor and so much blood work she ruled out my heart. Did she have an answer or suggestion? No, her response was that “it wasn’t my heart” and so her part was done.

More than 2 years later when I was finally diagnosed with MS I was informed that there was a lesion on my spine that was most likely causing the MS Hug. Hug my behind! From that point on whenever I have chest pain/pressure I just figure it is my MS. These hugs or banding as it is also called stopped after I got my stem cell treatment. Though I hadn’t really noted it until it came back last week.

For those who don’t experience this weird symptom of MS, it can be different for everyone. For me, it feels like a 7 pound weight on my sternum applying pressure to my chest that makes it difficult to get a full breath of air in my lungs. Sometimes there is a deep, sharp pain in my chest followed by this pressure. The weight is heavy, the pressure is firm but not heavy enough to make it feel like your bones will break. Some people experience the hug for a brief time, for others it can come and go for days, my is the latter. I have to remind myself that it’s not my heart every time it happens because it’s alarming.

When I have the moments like these, it makes me wish I have a friend in the medical field who could explain all the science to me. Our bodies are weird and mysterious and I am always in awe about how one tiny spot in a particular section of your nervous system can wreak havoc on so many parts of your body and life.

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.

Autologous Stem-Cells, Stress and M.S.

In January of this year, one week after my father suddenly passed away I flew to California with my husband to get stem cells for my Multiple Sclerosis. I wanted to reschedule, I did not want to leave, how are you supposed to be at your best to give these cells their best chance when you just lost a parent?

My father was admitted to the hospital on a Monday, was diagnosed with stage 4 colon cancer on that Tuesday and spent a lot of time in hospital beds. He was doing better, they moved him to a room, he was doing physical therapy and I was helping my mom to research rehab facilities. The Monday after he was admitted (one week later), he was back in the ICU, there were complications. He had numerous blood clots in his lungs and the stitches in his abdomen had popped somewhere and air was leaking into his abdominal cavity. He did not want to go through surgery again, my dad decided he was done fighting his body. He made me promise before everything went downhill that I would still get my stem cells, even though my mom couldn’t go. So my husband and service dog came with me to California to get a treatment not covered by insurance in the United States, but my last real hope.

Prior to the decision I did a lot of research, different types of stem cells, where you could have which kinds done. Success rates, what symptoms it could help with, pricing. It was overwhelming and sometimes confusing. I have a friend who goes to South America for cord blood stem cells, but she has Primary Progressive MS and needs even more of a boost than I do.  I chose a place, I started speaking with their patient rep, and they have an approval process. Their doctors and nurses look over all of your medical information, medications, MRIs, how long you have been diagnosed and they decide if they feel that they have a reasonable chance to improve your body. They felt they could improve mine, big sigh of relief. The important thing to know is I did not have any time of miraculous expectations. I didn’t go in thinking or expecting all of my symptoms to disappear. I hoped that it would take the edge off of the daily chronic pain and fatigue that I felt down, deep into my bones. I was not expecting any of the numbness or cognitive issues to lessen. I did not expect to have my lesions vanish like magic, or my hearing to getting better, or my hair to grow back. I think that is key, lower expectations, because anything above it is like Christmas.

This is not a sponsored blog so I am not going to say what company I used, everyone’s MS is different anyhow so if you choose this path, it has to be a personal choice as there are so many factors. We checked into the hotel and made our way to the clinic to meet with the doctor. During this time we discussed all of my medical issues (MS and not MS related) and made a plan on where the stem cells might do the best work. That was day one. Easy, paperwork and plan taken care of. I was a bit nervous but that mostly had to do with the fact they had originally told me via phone that bringing my service dog would not be an issue and he and my husband could chill with me in the recovery room; but when we got their I was told someone had to stay with the dog since he couldn’t be in the recovery room.

Day 2: I went in early in the morning, letting my husband stay at the hotel and have breakfast since he wasn’t allowed to come back with my service dog anyhow. I got changed in a room and put on little surgical socks and waited in a hospital bed at the clinic for the surgeon to come in. After jokes about how I am giving him “plenty to work with” they explained the process again. They will be performing a mini liposuction from the stomach area, on thin people apparently they may have to go to love handles area but I also have insulin resistance so they had no lack of options for mine. They remove several tablespoons of fat from the area and separate the stem cells from the fat. Yes, that is correct, your stomach fat has stem cells that are just sitting there with nothing to do. They took some blood as well because they removed the plasma from the blood so they can mix the stem cells with the plasma to boost the success. Go time comes and the doctor gives me an IV of with the magic mix, shot of it into my spine, 3 shots in the outside of each calf muscle because I get severe muscle cramps, several shots in my shoulder and neck in hopes of releasing the tension from the week before and then a shot in each of the center turbinates of my nasal passages *that hurt even though it wasn’t supposed to.

By the time we got back to the hotel the tension in my neck and shoulders that came from spending a week working on my laptop in hospital rooms with my father was gone. I could turn my head fully, that’s pretty nifty I thought. Fast forward to being home, I am lying in bed with my husband one night and move one of my legs and get a little confused. I start moving both of my legs around, which prompted questions of what I was doing now. I exclaimed “I can feel my feet!”, it was so weird, after nearly 3 years of not really feeling my feet I could  feel them on the sheets of the bed. It is so bizarre not having feeling in something for so long and then to be able to feel them again. “Normal” people won’t understand and I got so many weird looks when I told people because who can’t feel their feet. I realized that winter that I don’t like socks because they are so confining. By the end of the week, the pain I had in my spine between my shoulder blades since 1999 was gone. I mean one hundred percent G.O.N.E., 19 years of spine pain, just gone. I still had some pain in other areas and I still do, but since the first week of my first treatment of stem cells the pain from a car accident in 1999 has been gone. For that I am grateful. For a little while, my fatigue lessened. I don’t know that it was gone and I definitely didn’t have an abundance of energy, but I was able to do household tasks without have to rest for an hour after doing laundry or dishes and then not be able to move well the next day.

Not quite nine months since my stem cell treatment and I feel it worked. It didn’t cure me, but it did go above my expectations. I can still feel my feet, which is not good when your children leave Legos on the floor, and I can still occasionally do housework and not be laid up for days. I do have to pace myself because I find it hard to just do a little since there is always so much to be done. Some of the pain has returned to my spine, but nothing like it was before, and nothing compared to my migraines, torn tendons and torn hip cartilage. The heat of the summer kicked my butt which made it hard to maintain perspective. I would recommend it to those who can make it happen and I do hope that sometime in the near future the FDA will approve it and insurance will start paying for it.