To anyone that is a constant presence in my life, it’s no secret that James has MS. For anyone new in our lives, my husband, James has Multiple Sclerosis.
A rundown of Relapsing Remitting Multiple Sclerosis, for anyone who doesn’t know anything about it. (That was us when the diagnosis first came, and for the first couple years as we tried to make sense of what the doctors were telling us.)
Multiple Sclerosis is thought to be an autoimmune disease. For some reason, which is still not known and in my opinion different for every individual, the body’s immune cells start attacking the protective covering of nerve cells called the myelin sheath. The damage that is there causes the nerves to be unable to effectively send signals from the brain to the parts of the body controlled by those nerves, which is when symptoms occur. Those symptoms can be anything from paresthesia (sort of numbness, but not quite the same), spasticity (muscles being activated when no signal is being sent to them) and weakness. There is simply no way to know what symptom someone is going to have with any of their flare-ups, and the faster the individual is treated, the more likelihood of maximum recovery.
Oh, and the name “Multiple Sclerosis”? Well, in order to be diagnosed, a patient has to have at least 2 incidents. When the nerve cell is damaged, once the body repairs the tissue, a scar is left in its place. Scar=sclerosis. Make sense?
So my husband has dealt with paresthesia from the beginning. That was actually his first symptom-the doctor thought he had carpal tunnel syndrome. He’s also lost most of the strength in his legs, and relies on the spasticity of his legs to hold him up when he’s standing. Most of the time, he uses a wheelchair because it’s easier for him to get around, he can move faster, and it takes less of his energy. But, he has a walker and uses that occasionally.
Our house looks like a mobility storeroom sometimes. Mobility equipment takes up a lot of space, and it often gets in the way. We do not live in a wheelchair accessible house, so with narrow hallways, and a closed layout, a wheelchair or walker is usually in the way when you go anywhere in our home.
There is no cure for MS. The current treatment options that exist are supposed to help slow disease progression. Since most of the treatments did nothing for James, and the one that did has an increasing risk of PML (Progressive Multifocal Leukoencephalopathy, it’s a brain disease that results in death or severe disability, with a higher risk in patients that are positive for JC virus, which James is) he elected to stop treatments a couple years ago.
Treatments that I’m familiar with are: Avonex, Copaxone, Tysabri, and Tecfidera. All are medications that James was on. Avonex and Copaxone were injections that I had to give him, Tysabri was given once a month via IV infusion, and Tecfidera was a daily pill. All had debilitating side effects for James except Tysabri, which just got too much to go to the VA for half a day each month, knowing that his risk for PML increased the longer he was on it.
There are other treatments, and perhaps they have different side effects or might be better received. But, since James’ disease seems to be in remission right now, despite being off treatments for over two years, he thinks that perhaps the stressful life we led before moving to Houston may very well have been what triggered his relapses. He is currently pursuing alternative methods to treat his MS, and we will be happy to share if he makes any progress on them.
That’s all I have on MS, for now. If you have any questions, we’re always happy to answer them. Just comment on here, or even fill out the “contact” form.