Ask these 3 questions to quickly identify inflammatory neuropathy

Patients with peripheral neuropathy present with weakness, numbness and/or tingling and pain in the upper or lower extremities or both. There are many causes for peripheral neuropathy. The most common causes for peripheral neuropathy are genetic mutations and diabetes.

For those types of neuropathies which are non-inflammatory, treatment is usually symptomatic, meaning focusing on the symptoms and removing the offending agent if possible. For example if a drug is causing the neuropathy, stop the drug or if diabetes is causing the neuropathy, control the diabetes.foot pain

However, peripheral neuropathy can also be caused by an underlying autoimmune disease. Up to 20 percent of patients with peripheral neuropathy actually have an autoimmune or inflammatory cause.

Quick identification and adequate immunosuppressive treatment of these patients helps prevent patient disability and sometimes death.

Therefore, when evaluating patients with neuropathies, the physician faces an important challenge of categorizing the disease as caused by an inflammatory neuropathy or a non-inflammatory neuropathy. Ascertaining whether the neuropathy is due to inflammatory vs non-inflammatory cause can sometimes lead to excessive testing, waste of health care dollars and, occasionally, harm to patients.

To solve this dilemma, our new research provides a simple strategy to quickly screen for inflammatory neuropathies.

Asking the following three questions, which highlight key characteristics of inflammatory neuropathies, prior to any blood work or other testing, can rapidly screen for potential inflammatory neuropathies:

1. Onset: how quickly did the condition present itself; did the symptoms of the neuropathy have a rapid onset and progress to reach their peak in less than eight weeks?

2. Distribution: how widespread throughout the body is the neuropathy; does the neuropathy affect one limb more than the other? Does it affect both the area near the body’s center and parts of the body located away from the center?

3. Systemic features: is the nerve pain accompanied by systemic features; in addition to the neuropathy, is the patient experiencing weight loss or skin changes?

If the answer to any of those questions is yes, then the patient has a high likelihood of inflammatory neuropathy and should be investigated and treated as soon as possible.

***

Karam-Chafic_16-sm
Chafic Karam, M.D., is the lead author of the paper “Rapid screening for inflammatory neuropathies by standardized clinical criteria,” published in the June 29, 2016 issue of Neurology® Clinical Practice.

 

In the interest of ensuring the integrity of our research and as part of our commitment to public transparency, OHSU actively regulates, tracks and  manages relationships that our researchers may hold with entities outside of OHSU. Dr. Karam serves as Neurology® WriteClick® Deputy Editor and received speaker honoraria from Nufactor and consulting honoraria from Lundbeck. L.A. Tramontozzi III receives publishing royalties for Deja Review Psychiatry (McGraw Hill, 2007, 2011).

Considering deep brain stimulation? OHSU maps treatment step by step

Colin Halstead of Eugene had DBS surgery at OHSU. “I don’t understand why anybody wouldn’t have this that could,” he said.

Colin Halstead of Eugene had DBS surgery at OHSU. “I don’t understand why anybody wouldn’t have this that could,” he said.

Many people with Parkinson’s disease or essential tremor reach a day when medication just doesn’t cut it anymore.

Sometimes the medication doesn’t provide the relief it once did. Or patients have to take such high doses that side effects spiral beyond what they can tolerate.

That’s when some turn to deep brain stimulation surgery, or DBS.

At OHSU, patients who have Parkinson’s or essential tremor and are considering DBS receive a step-by-step treatment plan. The steps include a thorough evaluation to make sure that only patients with a strong chance of success become candidates for surgery.

Here’s a guide to how the process works ─ for patients living inside and outside the Portland region ─ plus information on where to learn more.

Timeline

The DBS process typically takes about three months from the first appointment to surgery.

Out-of-town patients can conduct many of the appointments in their home communities through OHSU’s Telemedicine Network, which offers a secure video link to OHSU specialists. Some patients come to Portland only for surgery.

Evaluation

The first step is to establish that the patient has a clear diagnosis. DBS helps idiopathic or classic Parkinson’s, for example, but not other types. In addition, the patient should be at a point where medication no longer effectively controls symptoms.

You can find checklists on our DBS website to help indicate who is a good candidate. The site includes a checklist for Parkinson’s patients and for essential tremor patients.

OHSU's deep brain stimulation website includes guides to the DBS process for patients with Parkinson’s disease or essential tremor, including those who live near OHSU or far away.

OHSU’s deep brain stimulation website includes guides to the DBS process for patients with Parkinson’s disease or essential tremor, including those who live near OHSU or far away.

Parkinson’s patients: Next, Parkinson’s patients have a series of appointments over one or two days with movement-disorders experts. Specially trained psychologists test thinking abilities and memory. Physical therapists test movement abilities on and off medication. Patients may also meet with a speech therapist.

Essential tremor patients: Patients with essential tremor meet with a neurologist, neurosurgeon or both to go over medical history, risks and benefits.

Before surgery

Those found to be good candidates for DBS and who choose to go ahead have an MRI and a final appointment to make sure they’re healthy enough for surgery.

Surgery

Patients come to OHSU Hospital on the day of surgery and are put under general anesthesia. They have a CT scan that’s matched with the pre-surgery MRI, giving the surgeon a down-to-the-millimeter roadmap for placing the electrodes. The surgeon makes two small incisions, places the electrodes, and takes another CT scan to make sure they’re in the right places.

The surgeon also places thin wires under the skin of the head, neck and shoulders for connection to the pacemaker-like device, called a stimulator or an implanted pulse generator. Patients typically spend one night in the hospital and are released the next day.

Two to seven days later, the patient comes to OHSU to have the stimulator implanted. The device is about the size of a tea bag and is placed under the skin, usually below the collarbone. The person is put under general anesthesia for the procedure and goes home that day.

Programming and follow-up

Out-of-town patients have an appointment a week after DBS surgery to have their incisions checked and to receive initial programming of their stimulator. After that, they have appointments at one, two and three months – at OHSU or in their home communities – to adjust their DBS settings.

Patients in the Portland area receive incision checks and initial programming one month after DBS surgery. Then they have appointments for DBS adjustments at two and three months.

Patients may require several programming sessions to achieve the best symptom control.

After that, both sets of patients see their neurologist every six months for routine care and any needed DBS adjustments. The stimulator battery is replaced in a minor outpatient procedure every three to five years.

Visit OHSU’s DBS website to learn more. The site includes guides to the process for Parkinson’s patients and for essential tremor patients, including those who live in the Portland area and those who don’t.

“Brain team” collaboration helps kids learn about the influence of alcohol

ThinkFirst Oregon, the Portland Alcohol Research Center, and the Oregon Poison Center, (AKA the Brain Team) all located at OHSU, recently collaborated on a presentation for kids in grades 4-6, addressing the influence of alcohol on the brain.

During a two day period, over 900 students were bussed into the Safe Kids Union County Safety Fair, held at the Blue Mountain Conference Center in La Grande, Oregon.

Wallace Chan, from ThinkFirst, demonstrates the average size of an adult brain.

ThinkFirst educator Wallace Chan demonstrates the average size of an adult brain.

In 15 minute rotations, students learned about brain anatomy, function, and impact of alcohol on different areas of the brain.

Students participated in “Walk the Line” an activity very similar to a field sobriety test, where vision distortion goggles simulated the changes in behavior and coordination that alcohol can induce.

The Brain Team emphasized that in a real world situation, a pair of goggles can be taken off, while the influence of alcohol can stay with you.

Students were encouraged to apply what they learned about alcohol and the brain to their thinking about the other exhibits at the fair, which included ATV riding, preventing and handling bullying, safe bike riding, and wilderness safety. Students came up with ways that alcohol could influence safety, performance, and decision making in all those other areas.

Fiorella Carhuaz, Health Educator from the Oregon Poison center describes a memorable experience, “The most gratifying part of the event was when I saw their “aha” moment faces, and I knew they were deciding to say no to drinking.”

Teachers uniformly, and many quite emphatically, described the presentation and hands-on activities as very informative and age-appropriate. They thought it was effective experiential learning about the brain and the effects of alcohol, and was especially timely for students as they grow well into adolescence.

***


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Mark Rutledge-Gorman, Education Core Director-Portland Alcohol Research Center

 

 

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Fiorella Carhuaz, CHES Health Educator- Oregon Poison Center

 

 

Wallace Chan Photo

 

 

Wallace Chan, Education Presenter -ThinkFirst Oregon

 

 

 

 

Men’s Health: 3 reminders for maintaining a healthy mind

National Men’s Health Week is observed each year leading up to Father’s Day.

Help support the men in your life with these three tips for better mental health.

1. Depression affects everyone.

Men and women, older adults and young adolescents, all types of people can be affected by this “poisonous fogbank” which is how the author William Styron described depression.

But men may be inclined to falsely think they don’t (or shouldn’t) get depression.

Major depressive disorder, as its formally called, is one of the most common medical conditions, and at some time in their lives, one in every ten men develop clinical depression.

2. It is easy to recognize and get started on effective treatment for depression or other common psychiatric conditions.

A quick visit with your primary care doctor, or other medical professional if you prefer, is all it takes for an evaluation.

But remember—don’t delay. In my experience treating patients, the earlier they come in the easier it is.

In milder cases, you might even be able to benefit from a structured, self-help approach online. The VA, for example, has developed an online coach for PTSD.

3. Men may need an extra nudge to get treatment.

Whether it’s your husband, father, partner, son or friend, loved ones are well-placed to give that friendly nudge.

For example, our recent study found that depressed men who felt they had social support available to them were unlikely to use professional mental health services.

If you suspect a friend or family member has depression, one of the best ways to support them is to encourage them to seek care from a mental health professional.

***

Dr. Alan Teo

 

Alan R. Teo, M.D., M.S, is an Assistant Professor in the Department of Psychiatry and School of Public Health at OHSU, and a Core Investigator, VA Portland Health Care System.

Follow Dr. Teo on Twitter @psychteo or find more information at DrAlanTeo.com.

 

7 facts about deep brain stimulation ─ and why it might not be as scary as you think

YouTube Preview ImageThere’s no getting around it. Deep brain stimulation, or DBS, requires brain surgery. And that ─ understandably ─ makes people nervous. But DBS might not be as invasive or scary as you think.

DBS can be a powerful treatment for patients with Parkinson’s disease or essential tremor. Tiny electrodes, or leads, are placed in the brain and connected to a pacemaker-like device. The device sends low-voltage electrical pulses to help control movement. Many patients enjoy dramatic gains in quality of life.

DBS isn’t for everyone and, like all surgery, it carries some risks. Still, if you or a loved one has considered DBS, here are seven facts you might like to know about how it’s done at OHSU:

1. You don’t have to be awake.

Until this decade, patients had to remain awake during DBS surgery. The surgeon needed the patient to respond to questions or commands to make sure the leads were placed correctly. Sometimes the leads had to be moved. Many hospitals still use this method.

At OHSU, neurosurgeon and scientist Kim Burchiel, M.D., introduced “asleep” DBS in 2011. The patient is placed under general anesthesia, and the surgeon uses MRI and CT scans taken before and during surgery to place the leads in exactly the right spots.

A study of 60 patients at OHSU, published in the Journal of Neurosurgery, showed this technique is exceptionally precise. Asleep DBS is also less expensive, according to another study published in the journal. In addition, the surgery is faster and safer, and patients avoid the anxiety of being awake.

2. DBS doesn’t destroy brain tissue.

Some other surgeries for Parkinson’s disease or essential tremor use a technique called “lesioning” or “ablative brain surgery.” In essence, the surgeon destroys a tiny part of the brain. That means there’s no going back. Surgeries that use this technique include pallidotomy and thalamotomy.

DBS, on the other hand, is reversible. Placement of the leads ─ which are skinnier than strands of uncooked spaghetti ─ does not damage adjacent brain tissue. This also means that if DBS doesn’t work as expected or if some better technology comes along, the system can be turned off or removed.

3. The incisions are small.

DBS involves one or two incisions in the skull ─ each smaller than a dime ─ made with a surgical drill. A frame holds the patient’s head securely in place. Hair is shaved only from the incision areas.

Dr. Kim Burchiel is an OHSU neurosurgeon and pioneer in deep brain stimulation surgery.

Dr. Kim Burchiel is an OHSU neurosurgeon and pioneer in deep brain stimulation surgery.

After the leads are placed, the openings in the skull are covered with secure caps, and the skin is closed. The patient’s hair grows back.

4. The DBS wires won’t show.

Talk of electrodes and wires might conjure images of Frankenstein and protruding metal. The DBS system, however, is all under the skin.

The pacemaker-like device, called a “stimulator” or “implanted pulse generator,” is about the size of a tea bag. It’s placed under the skin, usually in the chest below the collarbone. It’s attached to thin wires ─ again, skinnier than uncooked spaghetti ─ that are placed under the skin of the head, neck and shoulders. The wires are attached to the leads.

The outline of the stimulator may be visible if someone is undressed, especially if the person is thin. But it won’t show through clothing. The caps in the skull create slight bumps, but they’re usually covered by hair.

5. DBS is not experimental for Parkinson’s or essential tremor.

The U.S. Food and Drug Administration approved deep brain stimulation as a treatment for essential tremor in 1997 and for Parkinson’s disease in 2002.

At OHSU, Burchiel was the first in the United States to treat a Parkinson’s patient with DBS ─ back in 1991 as part of a clinical trial. Since then, Burchiel has done the procedure more than 1,000 times. He leads one of the most experienced DBS teams in the U.S., with a record of excellent outcomes and very few complications.

Researchers are conducting studies to see if DBS is effective in treating other conditions, such as Alzheimer’s disease or depression. So while DBS is a long-established therapy for Parkinson’s and essential tremor, its full application may still be evolving.

6. DBS patients spend little time in the hospital.

You might think brain surgery would require a long hospital stay. But with DBS, most patients at OHSU spend just one night in the hospital after the leads are put in. Some spend two. The stimulator is typically placed two to seven days later, in an outpatient procedure.

7. DBS won’t keep you from normal activities.

DBS patients need time to recover from surgery. But once they’re healed up, they can resume regular activities such as swimming, traveling and sexual activity.

The DBS team at OHSU carefully screens patients. The team also explains benefits and risks in detail. Learn more on OHSU’s DBS website.

Nothing great is ever achieved without enthusiasm

The NW Noggin team briefed members of the Senate HELP committee on their research and outreach efforts in the Pacific Northwest.

The NW Noggin team briefed members of the Senate HELP committee on their research and outreach efforts in the Pacific Northwest.

NW Noggin, the brain-child of Bill Griesar and Jeff Leake, is an arts-and-science integrated outreach program that targets underserved communities in the Portland-metropolitan area.

Teams of artists and scientists from universities all over the Portland/Vancouver area collaborate to create art-based science projects that illustrate complex concepts in ways that non-experts can understand.

Recently, NW Noggin was invited to travel to DC to participate in “Briefing with Brains,” a week-long series of events aimed to inform members of congress about the outstanding research and outreach efforts being made in the Pacific Northwest. While in DC we were fortunate to present our work to members of the Congressional STEAM Caucus, co-chaired by Oregon’s own Congresswoman Suzanne Bonamici, as well as members of the U.S. Senate HELP Committee.

The Phillips Collection, a contemporary art gallery in Washingon, DC, also partnered with NW Noggin to host “Neuroscience Night” where interactive science stations were interspersed with artwork.

Chief among these was the work of Portland based artist Kindra Crick, granddaughter of Nobel prize winning scientist Francis Crick.

Perhaps the most important, and certainly most exciting meeting we had was with a bunch of elementary school kids who couldn’t have been more excited to learn about the brain.

Honestly, I’ll never get tired of being asked, “Is that a REAL BRAIN!?” because when you say yes, you wouldn’t believe how blown away a third grader is.

Graduate school can be a long and arduous journey, and even the most resilient among us can, over time, become a little cynical.

school outreach

Getting psyched for brains! NW Noggin getting ready for some amped-up future scientists at Turner Elementary.

But when kids look at you like you’re a veritable superhero for being a scientist that cynicism is replaced with a really gratifying sense of pride, and you realize that outreach really is a two-way street.

If you don’t know that neuroscience exists, you can’t decide to study it when you grow up.

Making sure that kids, regardless of their socioeconomic status, believe that a career in science is accessible to them is not only a critical endeavor, but is also the true responsibility of members of the scientific community.

By engaging kids at a young age we ensure that their awareness of their brain and brain health begins early; we plant seeds of curiosity that are nurtured over time.

NW Noggin also gives young scientists the opportunity to practice discussing their research in a way that is readily understandable to the general public.

Our research does not exist in a vacuum, and it’s really only when our findings reach the communities we hope to help that they do anyone any good. It’s for this reason that I believe that in addition to cultivating the next generation of scientists, it is our responsibility to disseminate our research in a meaningful way.

Through the effort of NW Noggin and outreach groups like it, I hope that we can continue to promote policies that support STEM education through federally funded programs.

We need to keep kids excited about science, because, like Bill always says, nothing great is ever achieved without enthusiasm.

***

christie-pizzimenti_2

 

Christie Pizzimenti  is a graduate student and Ph.D. candidate in the Department for Behavioral Neuroscience.

Two ears are not always better than one

My team of researchers has discovered that as many as one in two individuals with hearing loss experience abnormal fusion, or a blending of dissimilar sounds, when wearing either bilateral hearing aids or a cochlear implant with a hearing aid.

This “averaging” of sounds worsens their ability to hear others’ speech.

Typically, two hearing devices, when possible, are better than one. But some individuals with bilateral hearing loss hear speech better when using a hearing aid or cochlear implant in only one ear.Doctor Fitting Female Patient With Hearing Aid

For more than a half-century, hearing scientists and audiologists have been puzzled as to why.

This study, published in the Journal of the Association for Research in Otolaryngology illuminates the cause of the abnormal processing that results in this phenomenon.

This understanding will enable scientists to develop ways to improve patients’ ability to hear.

Typical-hearing listeners only fuse similar sounds between the ears.  We found that many hearing-impaired listeners fuse sounds less discriminately, fusing those that are both similar and different between ears, such as a low-frequency sound, a man’s voice or low tone on the piano, for example, in one ear with a high frequency sound, like a woman’s voice or high tone, in the other ear.

This would be like fusing the image of your thumb in your left eye with the image of your pinky in the right eye into a single finger.

The fusion also leads to averaging and distortion of the different sounds between the ears, similar to averaging of color between the eyes with the old-style red and blue 3-D glasses used at the movies.  For many hearing-impaired individuals, this fusion only distorts a few speech sounds.  However, for other individuals, fusion distorts the majority of speech sounds, and listening with two ears is so difficult that they choose not to use a second hearing device.

Our study also sheds light on why hearing-impaired listeners have difficulty understanding speech in background noise, and how abnormal fusion may contribute to this. If different voices are fused together, it is more difficult to attend to a particular person in a crowded room.

In the future, scientists hope to be able to offer patients with hearing loss brain retraining programs to help correct this abnormal brain processing.

***

IMG_4056_LinaCloseUp_small_1

 

Lina Reiss, Ph.D., assistant professor of otolaryngology in the OHSU School of Medicine, is the lead author of this paper titled, “Two ears are not always better than one: Mandatory vowel fusion across spectrally mismatched ears in hearing-impaired listeners.”

 

 

This research was supported by grants R01 DC013307, P30 DC010755, and P30 DC005983 from the National Institutes of Deafness and Communication Disorders, National Institutes of Health. [The laboratory cochlear implant Freedom processor was provided by Cochlear and the laboratory hearing aid was provided by Oticon.]

FAQs on deep brain stimulation: What is it? What does OHSU offer?

If you or a loved one has Parkinson’s disease or essential tremor, you may have heard of deep brain stimulation. But what is it? How does it help? And how is it done here at OHSU?

Here are 10 of the most frequently asked questions that can help you learn more.

We’ve also recently launched a new deep brain stimulation website with details on the procedure and which patients make good candidates.

1. What is deep brain stimulation?

Deep brain stimulation, commonly referred to as DBS, is a surgical treatment for patients with Parkinson’s disease, essential tremor and other disorders. It works like a pacemaker for the brain. Tiny electrodes, or leads, are placed in one or two parts of the brain that control movement. They’re connected by thin wires to a small device implanted just under the skin, usually in the chest.

The device, often called a stimulator, sends low-voltage electrical pulses to the leads, helping the brain control movement.

Colin Halstead of Eugene works as a counselor at a church. Since having DBS surgery at OHSU, he no longer worries about having to go on disability.

Colin Halstead of Eugene works as a counselor at a church. Since having DBS surgery at OHSU, he no longer worries about having to go on disability.

2. Why do people get DBS?

Many patients with Parkinson’s or essential tremor report a dramatic improvement in quality of life.

Patients often need far less medication to control symptoms. They can regain the ability to perform everyday tasks, such as eating and dressing on their own.

Colin Halstead of Eugene, for example, walked with two canes and took 27 pills a day before his DBS surgery at OHSU. His employer thought he needed to go on disability. Now Halstead can walk without a cane and takes one pill a day.

“I would do this again in a heartbeat,” said Halstead, who has Parkinson’s disease. His boss told him: “I would not know you have this disease anymore, from what I can see, unless you tell me.”

3. Is DBS a cure?

No. DBS won’t cure Parkinson’s or essential tremor, and it won’t slow the progression of either disease. The stimulator settings can be adjusted, however, to better control symptoms as changes occur.

4. How is DBS done?

DBS involves two surgeries. Here at OHSU, both are done with the patient under general anesthesia.

In the first surgery, OHSU neurosurgeon Kim Burchiel, M.D., makes one or two incisions in the skull, each smaller than a dime. He uses MRI and CT scans taken before and during surgery to place the leads in the exact spots of the brain.

A study at OHSU showed the technique is exceptionally precise. Most patients spend one night at OHSU Hospital and go home the next day.

In the second surgery, two to seven days later, the stimulator is placed in the chest. The device is about the size of a tea bag. It goes under the skin, usually below the collarbone. The patient goes home that day.

About a week later, the stimulator is programmed using a small device called a programmer. Many patients need several sessions to achieve the best symptom control. After that, the stimulator is typically adjusted every six months. The battery is replaced every three to five years in a minor outpatient procedure.

5. Does DBS help every Parkinson’s or essential tremor patient?

No. In some cases, DBS can make symptoms worse. We thoroughly screen patients to make sure they have a high likelihood of significant benefit. Those who aren’t good DBS candidates are offered other treatments.

6. Are there risks?

Yes. DBS involves surgery, and all surgery carries some risk. With DBS, risks include possible stroke or speech problems.

Risks, however, are generally low. A recent three-year analysis of U.S. academic medical centers, including OHSU, found that among 2,038 patients who had DBS, seventy-two had complications, and one died. Among the 219 patients who had DBS at OHSU, none died and one had complications.

7. How does DBS work?

Colin Halstead, a DBS patient who has Parkinson's disease, is back working in his woodshop.

Colin Halstead, a DBS patient who has Parkinson’s disease, is back working in his woodshop.

Researchers think the electrical pulses change the abnormal signals in the brain that cause tremor and other symptoms.

8. How does DBS differ from other treatments?

Unlike some other surgeries for Parkinson’s or essential tremor, DBS does not destroy brain tissue. That makes it reversible. If something better comes along, DBS can be turned off or removed.

9. How long does DBS last?

Studies show improvements last years. A study published in JAMA Neurology in 2011 found that Parkinson’s patients were seeing significant improvement 10 years after surgery.

In a 2012 study published in Stereotactic and Functional Neurosurgery, essential tremor patients reported significant benefits – whether they had DBS surgery one year before or four years before.

10. What does OHSU offer?

Burchiel, our DBS surgeon, has done DBS more than 1,000 times. He also introduced asleep DBS in 2011, relieving patients of the fear of being awake during brain surgery.

Patients also receive care from our nationally recognized movement disorders program, with experts in physical therapy, speech therapy, psychology and other areas.

In addition, we can treat DBS patients from outside the Portland area. A secure video link enables patients to complete many  appointments from their own communities.

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Learn more on OHSU’s DBS website. You’ll find a longer video about Colin Halstead, checklists to see whether you or a relative could be a candidate, and more about the benefits and risks.

Eleven-year-old inspired by her mom to find a cure for multiple sclerosis

image_8It has been important to me to raise money for the MS Walk for the past 8 years because my Mom, Carol, has been diagnosed for 21 years and I have only known her living with MS and its challenges.

At the age of 3, I was able to join her at an MS conference in Boston and it was then that I saw how MS affects thousands of people in thousands of different ways.

I knew that I needed to do my part in making a difference.

That is when I decided to fundraise on my own for the walk.

My parents walked with me through our neighborhood as I went up to the door of each house by myself and told the neighbors what I was collecting money for and why.

I was amazed how it seemed many knew someone who had the disease.  I successfully raised $1,500 that first year. Each year, my walk total has increased. In 2015, I raised $10,300 and was #5 top fundraiser for all Oregon walks.

This year, I have beat that total with $10,430 so far. I have until May 31 to try to get more.

It is my hope that people who live with MS will not only have a life as normal as possible, but that there will be a CURE and that in the future, others won’t have to hear the words, “You have MS” anymore! 

IMG_20160423_081403Over the years, I have been able to see my fundraising dollars being used productively as new MS drugs have been developed giving people more options for treatment.

I know it is because of treatment and great care by a MS specialist that my mom is able to live a good life.

Her specialist, Dr. Ruth Whitham, has given her that opportunity. Dr. Whitham is a huge part of “my family” and I will always be grateful for her. Because of her great care for my mom, I was able to exist.

Due to my fundraising accomplishments last year, I was privileged to attend the National Multiple Sclerosis Society’s Leadership Conference.

I learned so much there and it inspired me to work even harder for this cause.

My mom is no different than any other person’s mom, she just has a disease and I want to do all I can to help find the cure.

Claire’s mother shares her story of living with MS, and finding love and inspiration here.

Living and loving with multiple sclerosis

Carol Sarnowski, our guest blogger, patient and MS advocate, was diagnosed with multiple sclerosis 21 years ago. Here is her story.

***

My MS diagnosis came as a complete surprise.

I had finished nursing school and was at the prime of my life when the migraine headache I had been fighting for months to treat got more intense and I woke up completely numb on my left side one morning.

I went to my long time family doctor, JohnFB_IMG_1454974696594ny Bill Delashaw, Sr., in Longview, Wash., who was also a long time family friend. Of course, with my nursing knowledge, I was convinced I had a brain tumor and insisted on having a MRI.

Dr. Delashaw told me not to self diagnose, but ordered the MRI even though he disagreed with my self-diagnosis.

I had the MRI on Friday and on Monday, his office called telling me he wanted to see me. I went in and he explained he took my MRI films down to his son, Johnny Bill, Jr., a neurosurgeon at OHSU.

I was then referred to the OHSU Multiple Sclerosis Center, where my diagnosis was confirmed after a spinal MRI and a lumbar puncture.

This diagnosis was a surprise to me, my family, my friends and my doctor.

My migraines lasted 121 days and didn’t improve until weeks after an intense course of IV steroid therapy. I then started the only drug on the market for MS, Betaseron. I was very sick and thought my life and dreams were over.

Being single, I wasn’t sure if I would ever find a person who would want to marry me or if I would be able to have a family. I decided that I couldn’t help it — I had MS and I wasn’t going to let it hold me back from my dreams. I just knew I had to be open about my diagnosis and educate others the best I could.

I began dating Ken, my husband, in January 2000. I remember telling him about my MS on our first date and giving him the opportunity to bow out. He didn’t let the MS scare him away even though he had a friend who was pretty debilitated by MS.

I explained to him I had the best MS doctor —Dr. Ruth Whitham at OHSU— who had me on the newest MS drug at that time, Avonex.

We continued dating and were married in June of 2003.

Thanks to Dr. Whitham’s great care and knowledge, my MS stabilized. In October, 2003, she gave us the OK to try to get pregnant. She thought it could take awhile and instructed me on how to go off of my MS drug and try to conceive.

By December, I found out I was pregnant. It was a shock to all of us as it happened so soon. My pregnancy went great, even though I was off of my MS medication, and I delivered a healthy baby girl, Claire.

I have never hidden my MS from Claire. She went to appointments with me, saw me do my injections, accompanied me to MS meetings for the Patient Advisory Board I served on for Biogen, and participated in yearly MS Walks as I pushed her in her stroller.

I believe being open about my MS in all aspects of my life has helped me cope and succeed at living my life as close to normal as possible.

Claire’s early exposure to MS has made her my biggest advocate and my best medicine.

Claire is a Top Fundraiser for the National MS Society’s Portland MS Walk. I know I wouldn’t have the life I have today — or even my daughter — had it not been for the wonderful care I had from Dr. Whitham and OHSU.

I am forever grateful. After 21 years, Dr. Whitham is just not my doctor, she is also my friend.

Want to learn more from 11-year-old Claire? Read her side of the story here.

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