Other Faces of MS
As someone who was diagnosed with multiple sclerosis (MS) at the age of 24, I found the article about Janice Dean, the FOX meteorologist with multiple sclerosis ("Weathering the Storm," December 2014/January 2015), upsetting. I was initially diagnosed with relapsing-remitting MS but have now transitioned to secondary-progressive MS (SPMS), which means my disease is progressing steadily. I do not even qualify for disease-modifying therapy anymore because of my progression.
I believe featuring articles about people who have such mild cases of the disease only hurts the public impression and awareness of MS as a whole. Dean was using glatiramer acetate (Copaxone) and is currently not on any therapy at all. This gives the impression that MS is a "manageable" condition. That is not my experience. I am 34 and unable to work full time. I have experienced severe symptoms that cause pain and impair my vision, walking, and overall ability to function.
This article makes people like me, as well as other patients, feel that we have failed, when in reality we are doing the best we can with the restrictions the disease has put on us. Not everyone is as lucky as Janice Dean. Please keep that in mind when featuring articles about MS. - Meg Morgensen, Des Moines, IA
I thought the article on Janice Dean was very upbeat, but I felt a little saddened by it. My son has primary-progressive MS and nothing promising is ever in the pipeline—all the research seems to focus on relapsing-remitting MS (RRMS). He often feels despondent because, as he says, "I have the worst kind of MS—there is no treatment."
However, after researching your archives, I found the wonderful article, "Getting at the Root of MS." I thank you and the Myelin Repair Foundation for this research that looks so promising. Please push for more funding in this area, and please include more hopeful articles for those who do not have RRMS. They need some reassurance, too. - Anita Drozdyk, Schroon Lake, NY
My daughter was 20 when she was diagnosed with relapsing-remitting MS after suffering from optic neuritis. A few years later, her disease progressed to secondary-progressive MS (SPMS) and she developed full-body tremors, which forced her to stop working. She used injectable drugs for more than 10 years. Now, 17 years later, she can no longer sit or stand and has great difficulty speaking.
Since there must be thousands of people like my daughter, I think it's time to print an article about SPMS. - Joan Quilter, Santa Cruz, CA
THE EDITOR RESPONDS: Thank you all for your thoughtful letters and for the reminder that there are many different types and experiences of MS. We remain committed to sharing resources and the best available evidence to help people with a wide range of experiences and conditions. Although we cannot provide individual advice, we consulted one of our experts, who says that more progressive forms of the disease can be managed by treating some of the individual symptoms. In future issues, we will try to address these conditions more thoroughly. In the meantime, visit our online collection of articles about MS.
More in the Epilepsy Pipeline
The article, "A Pipeline for Hope" (December 2014/January 2015), did not mention another form of childhood epilepsy called PCDH19 Female Epilepsy. Caused by a mutation of the PCDH19 gene on the X chromosome, this form of epilepsy mainly affects girls. In fact, as many as one in 10 girls who begin having seizures before the age of 5 may have this condition, with the first seizure occurring most often between 3 months and 3 years of age. Seizures tend to appear in clusters that may last for days or weeks, and they are often resistant to medications and other treatments. About 70 percent of the girls have intellectual disabilities as well as behavioral challenges and aggression, and more than half have autistic characteristics.
My daughter has had this type of epilepsy since she was 6 months old but wasn't diagnosed until she was 9, when she was finally tested for the genetic mutation. Her seizures continue to be difficult to treat, even after having tried upwards of 10 different antiepileptic drugs.
I hope more health care professionals become aware of this genetic form of epilepsy and order genetic testing sooner, especially if they have a patient who presents with clusters of seizures early in life.
For more information, visit the PCDH19 alliance at pcdh19info.org.- Gina Calderella Farrell, Feeding Hills, MA
THE EDITOR RESPONDS: Thank you for sharing information about another form of pediatric epilepsy. As our article points out, researchers are learning about new epilepsy syndromes every day. We'll continue to report on these discoveries. Visit our archive of past articles on epilepsy.
Easing the Transition to Adulthood
Your excellent article on preparing a child for independence ("Independence Day," December 2014/January 2015) is the tip of the iceberg when it comes to what families need to know when transitioning from high school to university. As an educational consultant, I work with families whose students have specific learning issues. As the article states, individualized epilepsy plans are no longer valid at the university level. Universities generally want updated evaluations from around 16 years of age.
Some public high schools no longer require full psychological evaluations of children with neurologic conditions. In the past, full evaluations were conducted every three years to monitor progress. However, students with epilepsy have the right to a "transition meeting" to talk about life after high school and what it entails, as early as during their sophomore year.
It is really important for families and students to understand these transitions, their legal rights, the differences between high school and university responsibilities, and to know where to go for support services. Please consider more articles describing how students with neurologic conditions can prepare for the transition from high school to university. - Sandy Furth, MS, Golden, CO
Hitting a Nerve
I've had lower back problems requiring years of pain management. Recently, I've had pain from a nerve under my right shoulder blade, and what feels like a nerve trail from my lower back to the shoulder blade. I have had physical therapy and massage treatments but the nerve trail keeps coming back with more pronounced pain at the bottom of the shoulder blade. Thanks to "Escaping Pain" (October/November 2014) and its depiction of nerve entrapment, I hope I can treat the symptoms with this information in mind. - Dan O'Hare, Livermore, CA
CORRECTIONS: In the December 2014/January 2015 issue, the titles of two readers who wrote in response to our For the Caregiver column were printed incorrectly. Their correct titles are Allison Lindauer, NP, PhD, assistant professor of neurology, and Julie H. Carter, MS, ANP, professor of neurology. We apologize for the error and any inconvenience it may have caused.