Tip Us Off: Burning Mouth Syndrome

Thank you for publishing Neurology Now magazine—it has been very helpful to me in managing my conditions, which are migraine and peripheral neuropathy. I also have a neurological condition called, for lack of a better name, Burning Mouth Syndrome.

It is very painful swelling and burning sensation in the mouth (gums and hard pallet) with no apparent sores or dental problems. I finally went to Oregon Health Sciences University in Portland, OR, and was diagnosed with Burning Mouth. The treatment is 600 mg/ twice daily of alpha lipoic acid. After only one month I am getting relief.  Thought I would share this with you per your “Tip Us Off” request, because apparently no doctors in Central Oregon are aware of this condition.

—Barb Burns, Oregon

End-Stage Parkinson’s Disease

As the full time caregiver of my 81-year-old father, I am interested in information on end-stage Parkinson’s disease (PD). On the Internet, I came across a July 2007 article from Neurology Today (neurotodayonline.com) on this topic. One observation from the article was that people with PD generally stop making office visits to their neurologist when they reach the end stage. And neurologists focus on quality of life from diagnosis until the patient reaches the end stage. At this point, patients are either house bound or in a nursing home. Since PD is not fatal—unlike ALS, which bears many similarities to PD in the end stages—neurologists offer little or no guidance near the end. The two neurologists my father saw over the years were excellent; they kept us on track and coping with the progression up until this winter, when my father became unable to walk, even with assistance. His primary care physician got us signed up with Hospice. Home health care aids, nurses, and a social worker come at various points in the week, which has alleviated some of the stress of caregiving, but inquiries I’ve made regarding what to expect at this stage have yielded no new information. I’

m told that everyone is different.

At this time last year, my wife, father, and I roamed Florida in a truck camper, dodging a record snowfall winter in our home state of New Hampshire. Now his meds don’t work as predictably. He is difficult to understand and often unable to complete sentences. He spends most of his time in bed, and we are aggressively treating his bedsores. Loss of cognitive abilities have diminished his interest in and ability to follow movies and football games, both of which we enjoyed together. Whether it was studied adjustments to his med schedule to increase on-time, a well-timed dose of Xanax, or a future goal (like the FL trip), I “always knew what to do,” as my father said. Now I feel as if I am reacting—rolling with sometimes rapid-fire changes (like last week’

s pneumonia), and riding the roller coaster of good days and bad days. Are there neurologists who have studied the end stages and can offer advice, or at least help us attain some state of grace? 

—

Tom Robinson

Unsung Heroes: Treating Migraine

I suffered with consistent migraines for several years brought on by everything from stress to a weather change-sinus headache. The headaches increased from almost once a month during my menstrual cycle to at least twice a month every month, and would last as long as three to four days. I was virtually living on a butalbital/codeine/NSAIDs cocktail at least once a week if not more just to keep myself going and hold a steady job. This was my life for almost two full years until, after a change in my company’s Health plan, I was blessed enough to have an incredible primary care physician—Dr. Diane Bibbs of Chicago—who stuck with me and found me the best help possible, Dr. John H. Jacobsen, a neurologist also in Chicago.

Looking at all my symptoms along with other health problems, Dr. Jacobsen was able to get my migraines down to almost none in a period of six months with almost no break-through headaches to speak of. He was able to do this by putting me on a daily dose of Inderal LA. He explained that research has found that people with high blood pressure, which I had, do remarkably well in getting rid of migraines after taking this med on a consistent basis instead of at the onset of the headache, which I had been doing.

The flip side was that after completely getting the codeine out of my system, it allowed my arthritis symptoms to become incredibly visible, but you can’t have everything!

I feel incredibly fortunate to have had these two doctors in my corner at that time. If not for them, migraines would have continued to control my life.

—L. Moreno

Cauda Equina Syndrome

I would like to see an article on cauda equina syndrome (CES). So many people end up with CES because they don’t know the “red flags”—and neither do the medical professionals they see. People with CES struggle a lot more than the typical spinal cord injury person because of the lack of knowledge by most medical professionals. The International Standard of Neurological Classification of Spinal Cord Injury clearly classifies CES as a spinal cord injury.

I have been lucky to find a CES support group and a very knowledgeable neurologist at Emory University, a specialist in CES, whom I call my hero. He couldn’t believe I had been left in my condition for over a year when I saw him in December 2005, and he was stunned when he saw my new MRI, which resulted in him referring me to a neurosurgeon. As a result of back surgery, I have regained some feeling in my inner thigh. My neurologist also recommended bladder and bowel therapy.

—Gloria Stokely
    Fountain Inn, SC

Primary Lateral Sclerosis

Thank you for the recent article on primary lateral sclerosis (March/April 2009, Waiting Room, pg. 13). However, you did not address hereditary spastic paresis. This is a related upper motor neuron disease, and the condition that I live with. For more information you may go to sp-foundation.org, which has links to an overview summary sheet and an explanation of the problem, with illustrations of the brain and spinal cord. I greatly appreciate your magazine and have recommended it to many friends, lay and professional. Thanks and keep up the good work.

—Gerry Strachan, retired nurse and teacher
    Coronado, CA

Complex Regional Pain Syndrome

I was dismayed to see your answer to Dr. Quaglieri’s letter regarding Debra Gordon’s well-researched and well-written article in the March/April issue of Neurology Now, “More Than a Feeling.”

I say this as the party receiving the “botched” care. I woke from a total hip replacement with evident sciatic nerve damage that was later determined to be permanent. The surgeon who performed the procedure withheld the diagnosis from my neurologist. I must take some blame for this, considering I was the patient and followed my surgeon’s advice without questioning him, even though the pain became increasingly unmanageable.

The doctor still took no action after nearly 50 subluxations and two dislocations. I finally went to a reconstruction specialist, who performed an osteotomy due to the fact that the original femoral component was too short.

As Dr. Quaglieri correctly points out, it is a rare problem, but over time I have personally spoken to many other patients with this rare problem. And for us, it means coping with a lifetime of chronic pain.

—Max Sokolnicki

ADHD Medication

In the studies on ADHD medication for children that you cited (“Overmedicating for ADHD?” March/April 2009), the fact Ritalin was the only drug used to represent “medication” poses a problem. To use this single drug to represent “medication for ADHD” while there are currently nine different drugs used is not only incorrect but raises the difficult question of how one might proceed in doing a satisfactory study. Given all the factors involved, is it even possible? 

—Sol Friedman

Grasping at Straws?

In Dan Hurley’s article, “Thinking About Gingko?” (March/April 2009), Dr. Knopman of the Mayo Clinic says he is amazed at how people continue to take unproven supplements while shaking a finger at prescription drugs that have undergone years of testing. The article cites two possible reasons but ignores the more likely ones, including the disabling side effects (and withdrawal effects) of taking many approved prescription drugs. There is still relatively little funding for research into natural supplements. And when patients are made to wait months for a doctor’s appointment or can’t afford prescription drugs, then yes, we do grasp for straws.

—Kim Duvall
   University Heights, OH

Patient Seeking Diagnosis

My son suffers from a neurological disorder that doctors—neurologists at the Mayo Clinic in Rochester, MN—have been unable to diagnose or treat effectively. They appear to know that the source of the disorder is in the “mid-brain” (which scans show to be “dysmorphic”), and they also know that one effect of the malady is “frontal lobe disinhibition” and an inability effectively to plan and organize. But they have concluded that the precise cause of the condition is “unknown” and therefore untreatable. 

There must be hundreds or thousands of patients whose brain/neurological disorders are, at this point, undiagnosable even by the best of doctors. I think it would be helpful to those who suffer from such disorders, and those who care for them, if Neurology Now gave attention to this general problem.

—Jackie Reither

Stroke

As a stroke survivor I came to know about Neurology Now while waiting to be seen by my neurologist at Northwestern Memorial Hospital in Chicago. A designer of medical and scientific publications by trade, I find your magazine to be well thought out and visually appealing.

Here are some of my favorites: “Follow the Reader,” “Speak Up,” and the new photo essay, “Pictures of You.”  These photos are a beautiful way to communicate a sensitive reality to the reader. They are engaging and the interview intimate, drawing the viewers to a personal conclusion of the reality of illness and the human spirit.

Here’s what I’d like to see: post-stroke noise sensitivity. Not only did I experience this firsthand, but I also noticed that I couldn’t speak above a whisper, yawned constantly, craved coffee, and used ice packs for relief on my head. Speaking of which, thank you for the story “Your Brain on Ice” (March/April 2009). I’ve found no other articles on this subject.

—Cari Biamonte