The Diagnosis:
In March 1995, I had my first known exacerbation of MS. I woke up one morning with parethesias on my right side, which is like the pins and needles feeling you get when your feet fall asleep only this didn't go away. In April, the right, back side of my neck felt like a severe sunburn and developed into an itch you cannot imagine. Nothing would relieve it. In May, my right arm went numb and then the numbness traveled down my entire right side. It was like I had had a stroke. I had to swing my right leg when walking. Typing became difficult and a severe handicap with my work in the technology field. I am, also, right handed so a simple thing as signing my name became difficult. At this point, our family doctor ordered a MRI.
The MRI came back showing a white spot on the spinal cord. When the film was first read, the doctors thought I had a spinal cord gliaoma or tumor. We were stunned. The neurosurgeon asked for a second opinion from a neurologist. After he reviewed the film he wasn't sure if it was a tumor or some sort of demyelination due to MS or a virus. Several months of treatments and heavy dosages of steroids followed along with debate about which of the three we were actually dealing with. Finally, it was decided the only way to find out was to do a biopsy of the area, which was highly risky and could leave me paralyzed or worse. Because of the high risk, I decided I wanted to go to Mayo Clinic in Rochester, MN for the procedure.
After two days of testing, review of those tests and my medical records, the doctors at Mayo determined it was, at least, not a spinal cord tumor. What a huge relief! It was still unknown if this was MS or a virus. The lead neurosurgeon told my wife and I if it was MS there would have to be time and space between this exacerbation and the next one. He explained there was no definitive test to determine if I had MS or not. We returned home uncertain what the future held but celebrated it was not a tumor as first thought. I had a new lease on life!
During the next eight months, I gradually got better. I regained most of the feeling I had lost and my motor skills returned to almost what they were before. Then, in the fall of 1996, the parethesias returned, only in my right foot. I was then diagnosis with Relapsing and Remitting MS and the heavy doses of steroids resumed to lessen the effects of this exacerbation. I was told there is no cure and they are not sure why the body attacks itself. I was informed there were drugs I could take to reduce the number of relapses I may have and would decrease the effects the relapses have on my body.
The Treatment:
The first drug I took was an injection every other day for two years, but I had difficulty living with the side effects which included flu-like symptoms, depression, fever and body aches. My neurologist switched me to another drug, however it required an injection every day and I developed extremely sore injection sites. Then, I was switched to the drug on am currently on and have been for 8 years. It is a once a week injection which I take on Friday nights. I still suffer from flu-like symptoms, body aches and fever. I feel like crap most of Saturday and very tired on Sunday. But I feel well enough the rest of the week to function at work and help at home.
While other drugs are being tested and sound promising, we have also seen drugs such as Tysabri have high risk side effects such as the possibility of a brain infection that causes death.
How MS Has Affected Me:
While my form of MS (Relapsing and Remitting) is not as aggressive as other types, I still lose ground each time I have an exacerbation. MS damages the nerves in the central nervous system by attacking and eating away the myelin sheath that covers them. When it goes into remission the myelin heals but cannot return totally to what it was. Think of the nerves as a coated piece of wire. The coating is the myelin sheath. When you are a child that "coating" grows and stretches with the nerve as you become an adult. When the sheath is damaged as it is in MS, the nerve (or the wire) and the sheath have the ability to repair themselves, but the sheath cannot stretch to cover the nerve as it once did. The electrical currents that run along our nerves is disrupted each time it hits one of the damaged areas in sheath. It’s like that wire having a short circuit due to the coating being chewed away.
Because of the damage done to the myelin sheath covering my nerves, I lose ground each time I have an exacerbation. The amount of ground loss depends on how severe the exacerbation is. I always recover some ground but my body cannot recover back to what it was before the exacerbation.
In the years since I was diagnosed, I have lost most of the feeling in my hands and feet. I am numb from my chest down. My family is amazed I am able to continue walking because my feet are so numb. I get fatigued easily when walking and suffer from loss of strength. I have difficulty writing and my writing has become illegible. My balance is off to the point I fall occasionally. My last MRI showed spots on my brain. I have always had a photographic memory, but now struggle to find words I want to say. With my most recent exacerbation, I have become numb on my on the left side of my face, roof of my mouth, and left side of my tongue so now I have difficulty saying the words I've struggled to recall..
I get up every day with nerve pain. Nerve pain is hard to describe. Nerve pain is different than the pain you feel when you stub your toe or hit your elbow. It can be an ache or sharp pain that no matter what you do, you can't get rid of it. The medications you normally take for most pain, doesn't work on nerve pain. I take medications specifically for nerve pain and sometimes even they do not work.
I can no longer do a lot of things I like doing or am limited. I love to hunt and fish, but not having my balance and being fatigued so quickly limits my ability to do much. It's difficult for me to do some of even the simplest tasks around home. Imagine not having your balance and trying to get on a ladder to change a light bulb!
Why Stem Cell Therapy:
I am encouraged by the research I have done on the Stem Cell Therapy that I hope to receive. I have been in contact with others who have received the therapy and I am amazed with the results they have had. They have encouraged me to have the therapy as soon as possible as the less damage there is to reverse, the better the outcome.
In my next entry, I will cover what it has done for some other people and share what I hope it will do for me. So stay tuned!
God Bless!
