MS Info

Asher and Bret, July 2007

The faces of MS are as varied as the people who suffer from it. Bret is a courageous warrior in the face of this disease. If you are interested in learning about multiple sclerosis, please visit:

www.nmss.org (You can visit the Indiana chapters from this site.)

We appreciate any prayers you offer for Bret as he deals with the effects of MS every day. Thanks!

Updated April 7, 2008

We are still not completely sure whether Bret has Devic’s disease or if it’s “plain ol’ MS” (as if). Anyway, he started Imuran, a chemotherapy drug, and it seems to be helping. He is also using steroid therapy and working with a physical therapist to strengthen some of his weaker muscles.

However, the heat in Florida (where I am writing this) has really bothered him. That is nothing new. Since his MS diagnosis, the heat has been killer to his body. It zaps the best of us, but something about the way it affects his body is worse. Thankfully, he can recharge a little bit each time he takes a nap. He has complained more of pain while in the heat. His muscles tend to get tight on a daily basis, but the pain is just harder to handle. Please continue to pray for him and for our entire family. Thank  you!

Updated October 18, 2007

At a recent visit to Bret’s neurologist, we were presented with information about Devic’s disease. This was not the first time this disease has been considered as an alternative to Bret’s multiple sclerosis diagnosis. Some say that Devic’s is a subset or variation of MS, while others say it’s a separate neurological disorder. I think it is a fairly new diagnosis. The diagnostic criteria was teased out in 2006. Last year Bret took a specific Devic’s blood test that came back negative. However 30 percent of patients with Devic’s don’t test positive, so that’s not a clear indication. His “MS” symptoms are more consistent with Devic’s, although we are going to consult a neuroradiologist to further gauge if the appearance of lesions on his MRIs are consistent with Devic’s, too. If that is the case, we may travel to Mayo to seek further information on treatment.

The blessing and curse of information is that it can provide you with needed answers and confirmations while it scares you out of your mind with words like “paralyisis” and “fatal”. Here is what nearly paralyzed me with fear this morning as I did some research.

symptoms of spinal cord dysfunction: (which is what Bret faces daily)

• muscle weakness and lack of coordination
• loss of bowel and/or bladder control
• loss of sensation, numbness

Usually, as the disease progresses, both visual and spinal cord symptoms develop.

Outcomes of Devic’s Disease

The course of Devic’s disease is highly variable. It largely depends on whether there is a tendency for relapses to occur after the initial flurry of symptoms that leads to the diagnosis.

In general, attacks of Devic’s disease tend to be more frequent and severe than they are in MS. The major risk to patients is severe damage to the upper spinal cord, which can lead to inability to breathe on one’s own. This may be fatal. However, some patients with Devic’s disease seem to enter a long period of time where the disease remains stable. Devic’s disease has not been studied in large enough populations to predict the outcome of individual cases with great certainty.

Complications of Devic’s Disease

Permanent blindness may occur in one or both eyes. Permanent loss of strength or sensation in the arms or legs may occur. Inability to control the bowel or bladder function may also occur.

At any point in this disease, patients may develop sudden brief, repetitive spasms. These spasms may also occur in MS, but they are considerably more common in Devic’s disease. With these spasms, patients develop prolonged tightening of arms and legs that last for 15 seconds to 2 minutes. They may be painful and recur several times a day. In most cases, they respond very successfully to treatment with an anticonvulsant medication.

So, after reading this I read a quote on a Devic’s support page which said:

“I am not afraid… this is what I was born to do.” - Joan of Arc

Wow. She was burned alive and she claims that she was not scared. So, I guess this is what Bret and I were born to do. Easier said for me, who is the one who stands by his side while he has to suffer with numbness and pain. He is a warrior. He is courageous. But he is also human with lots of emotions all over the board. Again, please pray for us as we seek wisdom in treatment. And pray for our boys that they may develop compassion and not bitterness. Thanks!