Category Archives: Neurology

Article In Brief

Many of the state policies and regulations that enabled greater flexibility about access to telehealth across state lines have been retracted as COVID-19 rules and mandates relax. The patchwork of varying policies regarding telemedicine has prompted a call for more streamlined pathways to interstate credentialing for physicians who see patients in other states.

Neurologists at Wake Forest Baptist Health in Winston-Salem, NC, never used to get this kind of call, but it's happening more and more these days. A patient from a town like Blacksburg, VA, nearly two-and-a-half-hour's drive away will travel just over the border into North Carolina, seek out a parking lot with good cell reception or Wi-Fi, and connect via the health system's electronic medical record patient portal to their Wake Forest stroke specialist or epileptologist.

Our catchment area includes southern Virginia and West Virginia, said vascular neurologist Amy K. Guzik, MD, an associate professor of neurology at Wake Forest. Many of our patients have mobility and transportation limitations and may require a care partner or other person to drive them to the clinic. When telehealth limitations were lifted during the height of the COVID-19 pandemic in 2020, that was really beneficial for these patients, especially for follow-up appointments, and we were hoping that would continue. Now we have to ask each patient what state they are in before we are able to see them.

States of emergency issued by state and local governments in 2020 have gradually been lifted over the past year, and with them, temporary waivers allowing doctors licensed in one state to provide care to patients in other states via telemedicine.

As of October 6, 2021, the Federation of State Medical Boards (FSMB) reported that 18 states still had such waivers in place, while 32 states plus the District of Columbia no longer have waivers. Virginia's waiver, for example, expired in June 2021, but West Virginia's is still in place.

The geographic boundaries are so arbitrary, said Dr. Guzik. If a patient is 10 miles in one direction, I can't see them, but if they're 10 miles in another direction, I can.

The patchwork of emergency orders has created confusion for providers and health systems around the country, said Lisa Robin, FSMB's chief advocacy officer.

A few states have made their waivers permanent, while others have allowed them to expire. A lot of bills are being introduced surrounding telehealth in state legislatures, with licensure and credentialing being a key piece, but also credentialing of facilities and broadband and infrastructure resources to support telehealth. We expect a busy state legislative session. (Federal waivers that allow Medicare billing for both video and audio-only telehealth services remain in place at press time.)

For some neurologists and their patients, the end of the licensure waivers in some states has not proven particularly burdensome.

Here at NYU, for example, our out-of-state patients are frequently in Florida, because a lot of people go from New York to Florida for the winter, said Neil A. Busis, MD, FAAN, clinical professor of neurology at the NYU Grossman School of Medicine, associate chair for technology and innovation in the department of neurology, and clinical director of the telehealth program.

Florida makes it extremely easy to get a pure telehealth license; the process literally takes like half an hour. We also have many patients from Connecticut, which has the relaxed requirements for telehealth in place until June 2023, and New Jersey, which has made it fairly easy to get a temporary telehealth-only license with policies that are in place through the middle of January 2022.

But in neurology deserts like the Mountain West comprising Wyoming, Utah, New Mexico, Nevada, Montana, Idaho, Colorado, and Arizona, and for patients with rare conditions for whom there are only a handful of centers of excellence across the country, the waivers had provided access to expert neurologic care that would otherwise have been all but inaccessible. This was true, particularly given that travel can be burdensome for people with conditions such as epilepsy, Parkinson's, and Alzheimer's disease; post-stroke patients; and children with rare neurologic conditions.

The Child Neurology Foundation has had a series of strategic discussions this year on the role of telehealth in child neurology, said Dr. Busis. Imagine that you're at home with a child who has frequent seizures and may be on a ventilator and require frequent suctioning. You have a lot of supportive equipment that has to be with you at all times. It can take hours to pack up a medically fragile child for a visit to a specialized center an hour or more away, and if you're halfway there and the child has a seizure, what do you do? In the cases of these children, and other people who may be on home ventilation or other significant supportive care, it's not just I can't miss work today, it's life-altering. It's a quality of care issue.

As a stroke specialist, Dr. Guzik said she has found that telehealth is particularly beneficial for transitions of care as patients are discharged from the hospital to home and are adjusting to a new set of limitations.

After they're home for a couple of weeks, we want to check in and see how they're doing, she said. Maybe they do need that physical therapist they didn't think they needed at discharge, or the occupational therapist to help them modify their home. But it's difficult when you've just gotten home to turn around and go back to the medical center with your caregiver, especially if you're in a different state.

One potential solution to the licensure challenge is the Interstate Medical Licensure Compact (IMLC), which offers a voluntary, expedited pathway to licensure for physicians who wish to practice in multiple states. First launched in 2017, the Compact now has 33 member states and two member jurisdictions; Ohio became the 33rd state in July 2021.

Eligible physicians can qualify to practice medicine in multiple states by completing just one application within the Compact, receiving separate licenses from each state in which they intend to practice, according to the IMLC's website. These licenses are still issued by the individual statesjust as they would be using the standard licensing processbut because the application for licensure in these states is routed through the Compact, the overall process of gaining a license is significantly streamlined. Physicians receive their licenses much faster and with fewer burdens.

The FSMB strongly supports the IMLC, said Robin. We had expected that the number of licenses issued would fall off as the pandemic began to wane, but it has not. More states are joining the Compact and going live. With Texas and Ohio having joined the Compact this year, that's a lot of additional eligible physicians. We are going to work hard to try to get additional states to join.

The FSMB is also working on a new telemedicine policy to replace the one originally issued in 2014. The draft is expected to be released by the end of 2021, and will be voted on at the Federation's 2022 Annual Meeting in April. We are hoping to come to consensus on a very much expanded policy that addresses questions about licensure, modalities, continuity of care, and many other areas, Robin said.

In a telehealth position statement published in Neurology in August, the AAN called for a number of steps to make telehealth more accessible and equitable for all patients. Licensing, prescribing, and related policies should be simplified, the authors noted. A desirable solution could include blanket reciprocity and an expedited licensing process that would require one unrestricted state license, a new background check for each state in which telemedicine is practiced, and reduced annual fees for limited practices. This would ensure protection of patients' rights to receive telehealth services as they require.

Telehealth should be here to stay, said Riley Bove, MD, associate professor of neurology at the UCSF Weill Institute for Neurosciences in San Francisco and a co-author of the AAN telehealth statement. It reduces the barriers to care, reduces patient costs for a visit, and decreases the burden of specialty visits for patients who are navigating multiple conditions. And during the pandemic, we have learned that this is broadly doable.

Before COVID-19, we had many colleagues who said that you can't provide good neurologic care via video. Through the past year and a half, however, we have become experts in examining patients via video and learned what is more and less beneficial, and what are the use cases where we need the patients to come in versus where we can spare them that trip and expense.

Lobbying for more streamlined pathways to interstate credentialing can be challenging, however. When I talk to our state legislators, they're mostly concerned about the patients in their own state and their constituents there, so they could say, Well, we want our own doctors in our own state to see the patients here, Dr. Guzik said.

Of course we do want the best, closest neurologist to see these patients, but there are situations with certain conditions or subspecialties or locations where it just makes more sense to see an expert in another state. Telehealth allows us to meet our patients where they are, let them live their lives and also get good medical care.

Certain cases are definitely not appropriate for telehealth, Dr. Bove acknowledged. And in others, it's just about patient preference. I have some patients who have said, Please, I just want to see you in person again. But there are others who never want to come back in person because they find telehealth so convenient. The reason most medical care happens in the clinic is not because that's where it's always best provided, but because it's most convenient for the clinician.

The patchwork of state policies and regulations regarding licensure, and variable payment reimbursements for telehealth reflects so much that is difficult about health care in America, Dr. Bove said. It underscores the major flaws in our health care system. And it needs to be changed.

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The Challenges of Maintaining Telehealth Access in a... : Neurology Today - LWW Journals

Article In Brief

An analysis of data from the National Inpatient Sample on pregnant and postpartum patients with acute ischemic stroke treated with mechanical thrombectomy suggests that endovascular therapy is a safe and efficacious treatment option for pregnant and postpartum people.

Endovascular mechanical thrombectomy (MT), an interventional procedure that removes a large blood clot from an artery or vein, is safe and effective for acute ischemic stroke (AIS) in pregnant and postpartum patients, according to a large population-based analysis published online first in the September 20 issue of Stroke.

After a series of landmark trials published in the New England Journal of Medicine in 2015, endovascular therapy has become a standard of treatment for AIS. However, it has not been evaluated in pregnant and postpartum patients, a group that is at increased risk but often excluded from clinical trials of interventional therapies.

Historically, pregnant patients are systemically excluded from clinical trials, so we felt it was important to report on this important subgroup of AIS patients. In prospective randomized controlled trials, MT has shown strong efficacy for the treatment of AIS with a number needed to treat of 2.6 for improved outcomes, senior study author Fawaz Al-Mufti, MD, associate chair of neurology for research and associate professor of neurology, neurosurgery, and radiology at New York Medical College, told Neurology Today.

Using data from the National Inpatient Sample, a database from the Healthcare Cost and Utilization Project, from 2012 to 2018, the authors analyzed data on pregnant and postpartum patients with AIS treated with MT. They compared them with nonpregnant patients treated with MT, and subsequently with pregnant and postpartum patients who were managed medically.

Compared to nonpregnant AIS patients treated with MT, pregnant patients experienced lower rates of intracranial hemorrhage and lower rate of poor functional outcome at discharge, Dr. Al-Mufti said. Our findings suggest that endovascular therapy is a safe and efficacious treatment option for pregnant and postpartum woman with AIS who are eligible. We hope providers as well as patients and their families can look to large database analyses such as our study to have the confidence to pursue this life-saving and deficit-preventing procedure should it otherwise be indicated.

The paper looked at 52,825 women hospitalized for AIS over a seven-year period, 4,590 of whom were pregnant or postpartum (defined as up to six weeks following childbirth). In this group, 180 women were treated with MT; these women tended to be younger (33 versus 71 mean years, p<0.001) and were more likely to present with extreme acute illness severity compared with the group of 48,055 nonpregnant patients treated with MT.

The study's primary clinical endpoints were functional outcome, all-cause in-hospital mortality, and hospital length of stay. Secondary endpoints included neurological complications specifically relevant to MT treatment for AIS, mainly intracranial hemorrhage and subsequent decompressive hemicraniectomy.

Patients treated with MT had lower rates of both intracranial hemorrhage (11 percent vs 24 percent, p=0.069) and poor functional outcome (50 percent vs 72 percent, p=0.003) at discharge. After adjusting for age, illness severity, and stroke severity, women who were pregnant or postpartum still showed an independently associated lower likelihood of developing intracranial hemorrhage (adjusted odds ratio, 0.26 [95% CI, 0.09-0.70]; p=0.008).

The authors also evaluated complications and outcomes between pregnant and postpartum patients treated with MT and those who were medically managed (4,410 patients). Using propensity score matching, the researchers reported pregnant and postpartum patients treated with thrombectomy had an increased rate (17 percent) of venous thromboembolism compared with medically managed pregnant and postpartum patients (0 percent; p=0.001) but a lower rate of pregnancy-related complications (44 percent vs 64 percent, p=0.034).They found no significant difference in postpartum complications, functional outcome at discharge, or hospital length of stay in these patient groups. No patients in the MT group experienced miscarriage after the procedure.

A major strength of the study, Dr. Al-Mufti said, was the large sample size using national data and, particularly, the number of pregnant and postpartum patients who had undergone MT. Although the retrospective nature of our finding is a limitation of the study that would normally warrant prospective validation, given the rarity of ischemic stroke during pregnancy and the postpartum period, prospective trials evaluating the usage of MT would be challenging.

As a result, he said, large-scale, multicenter investigations such as the present analysis offer meaningful insight into the utilization of these treatment modalities.

Vascular neurologists and neurocritical care experts told Neurology Today that this study was an important contribution to an area of stroke care that is insufficiently studied.

The current guidelines from the American Heart Association recommend consideration of these types of therapies including thrombolysis and endovascular MT during pregnancy if a person has disabling deficits and the benefits outweigh bleeding risks, but they make a slightly equivocal recommendation that it is reasonable to do it and don't really make recommendations about the postpartum period, said Eliza C. Miller, MD, assistant professor of neurology in the division of stroke and cerebrovascular disease at Columbia University Medical Center, who focuses on women's cerebrovascular health and cerebrovascular complications of pregnancy and the postpartum period.

This is mainly because there's really been a lack of data because pregnant and postpartum people have been excluded from all of the prospective trials that have looked at the safety and efficacy of these types of hyperacute stroke therapies.

The current paper presents the largest cohort reported to date of pregnant patients with AIS treated with MT, said Christa O'Hana S. Nobleza, MD, MSCI, medical director of the neurocritical care service at Baptist Memorial Hospital and associate professor in the department of neurology at the University of Tennessee Health Science Center in Memphis.

Before this study, there were only case reports or case series reporting on interventional acute stroke therapy for the pregnant. This study evaluated important factors that possibly limited pregnant patients from undergoing MT, such as potential for hemorrhage and worsening outcomes, and showed that those who underwent thrombectomy did not have higher rates of intracranial hemorrhage or worsened outcomes.

The data found an increased use of thrombectomy since the 2015 thrombectomy clinical trials and also showed that the outcomes from thrombectomy in pregnant women versus thrombectomy in nonpregnant women were similar or betterprobably because of the age difference in these two groups, Victor C. Urrutia, MD, FAHA, associate professor of neurology and director of the Comprehensive Stroke Center at the Johns Hopkins Hospital, said. In addition to the increase in thrombectomy, it shows there's a been a decrease in hemicraniectomy, suggesting that perhaps the benefit of thrombectomy, which is mainly decreasing the size of the stroke, has prevented the need of treatments of large stroke-producing edema in the form of hemicraniectomy.

One key takeaway is the group of women treated with MT didn't have pregnancy-related complications or increased mortalityso all of these things that people worry about did not occur, Dr. Miller said. Another interesting finding, she added, was that pregnant and postpartum patients who had MT were more likely to have venous thromboembolism. This could be explained by the fact that those who get MT are people who had a very large stroke, so you're possibly comparing them with people who had a more minor stroke and might be able to get up and walk more easily, she noted. But it is important for us to remember in general that pregnancy and the postpartum state increase the risk of venous thromboembolism very significantly, so just like with all our stroke patients, we must be hypervigilant about preventing this complication.

Overall, this paper establishes more conclusively that endovascular thrombectomy for acute stroke should be made available for pregnant women who meet the criteria, Dr. Urrutia said. I think the paper might change practice in the sense that those who may have been hesitant for lack of data to consider patients who were pregnant and who were having stroke for treatment might more easily consider it.

Dr. Miller agreed. Yes, there can be a discussion of risk, but I would say in the vast majority of cases, the benefits are going to be so much greater than the risks. I hope that this study helps reassure people that it's okay to offer this therapy that's so life- and function-saving.

The limitation of the analysis, as the study authors and all of the commentators pointed out, is its use of an administrative dataset, which does not allow for more nuanced information about the patients or their long-term outcomes beyond hospital discharge.

Still, Dr. Nobleza said she believes this study provides an important foundation for future potential studies analyzing the effect of acute stroke reperfusion therapies on pregnant patients. Study designs that can incorporate the pregnant patient are needed; however, they are challenging. For now, I believe the information from this study can still be utilized to guide shared decision making regarding acute stroke reperfusion therapy for the pregnant population.

Dr. Urrutia said he would also like to see more specific outcome data in future studies, for example, using measures like the modified Rankin score. I doubt that there would be a randomized clinical trial to test this, so I think the future is probably going to be more pooled individual patient data meta-analyses and those types of studies. With a relatively low frequency eventpregnancy-associated stroke treated with thrombectomy, the difficulty is to be able to get enough cases to also witness the more granular data.

Dr. Miller, however, suggested that the concept of excluding people who are pregnant or postpartum from clinical trials should be revisited. Stroke is a major cause of maternal mortality in the United Statesand even more a cause of severe maternal morbidityso we should be doing everything we can to prevent death and disability in people who are pregnant or postpartum.

While she acknowledged the challenging nature of designing such clinical trials, she pointed out that she conducts a lot of research in collaboration with obstetrician-gynecologists, who are experts in doing clinical trials in pregnant and postpartum people, including interventional and medication trials. There's a whole network for maternal fetal medicine trials, just like we have StrokeNet in stroke, and they do these trials all the time, so it's certainly feasible to enroll pregnant people in clinical trials.

Dr. Miller said it is frustrating to see people who happen to be pregnant or postpartum are not being treated for acute stroke in the same way they would be treated if they weren't pregnant. For example, I sometimes see or have heard about imaging being delayed because people are worried about the radiation risk and they wait for the MRI or they don't do the CT angiogram, but all of these things have been shown to have minimal risk in pregnancy, and the recommendations from both the American College of Obstetricians and Gynecologists and also the American College of Radiology state that, in the case of a life-threatening condition in the mother, these types of imaging studies should not be delayed or withheld. Obviously stroke with a large vessel occlusion is life-threatening and function-threatening, Dr. Miller said.

We should all remember that pregnant women and women in the early postpartum time, which is generally considered to be 6 weeks, are at higher risk of stroke than women of the same age and profile, and that we should address acute onset of neurologic deficits the same way that we would address any other person and consider the treatments that are appropriate depending on the cause of those deficits, Dr. Urrutia said.

Dr. Urrutia is the PI of a national randomized multisite trial called OPTIMISTmain, which is funded by Genentech. Dr. Miller receives research support from the National Institutes of Health, National Institute of Neurological Disorders and Stroke, and the Louis V. Gerstner, Jr. Foundation.

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Study Finds Endovascular Thrombectomy Safe and Effective in... : Neurology Today - LWW Journals

You wouldnt expect a scientist, teacher or business leaders work to improve following a traumatic brain injury or the onset of a neurological disorder, but, oddly, that does sometimes seem to be the case for artists at least if youre willing to accept expert opinions on art. In this interview with Robert Lawrence Kuhn for the PBS series Closer to Truth, Anjan Chatterjee, professor of neurology at the University of Pennsylvania, explains how artistic proclivities and production can change and even improve with neurological disorder. Because of the brains complexity, there are myriad ways in which this phenomenon can potentially be made manifest, but, as Chatterjee elucidates, the answer lies in different constellations of brain systems becoming more prominent as others become subdued. And, as Kuhn and Chatterjee discuss, these experiences in both artists and observers raise intriguing questions at the frontiers of neurology and aesthetics.

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Artists can flourish after brain damage. What does this say about neurology and aesthetics? - aeon.co

Get to know Neurologist and Headache Medicine Specialist, Dr. Kamel Ben-Othmane, who serves patients in Virginia.

(ProNewsReport Editorial):- New York City, New York Nov 6, 2021 (Issuewire.com)Dr. Ben-Othmane is a board-certified neurologist and headache medicine specialist practicing at Riverside Neurology Specialists Newport News in Newport News, Virginia. He can additionally be found at the Riverside Neurology & Sleep Specialists Gloucester in Gloucester, Virginia, and Riverside Neurology Specialists Hampton in Hampton, Virginia. With a keen interest in all facets of neurology, Dr. Ben-Othmane specializes in headache medicine and maintains a deep understanding of the profound impact of headache disorders, including migraines, on his patients life.

Born and raised in Tunisia, Dr. Ben-Othmane attended the Medical School of Tunis/ Facult de Mdecine de Tunis in Tunis, Tunisia, and graduated with a medical degree in 1990. Nearly a decade later, he relocated to the United States, where he completed an internship at Virginia Commonwealth University Health System (1999 1999) and neurology residency at the Institute of Neurology and the Medical College of Virginia in Richmond, Virginia (1999 2002)

Upon the completion of his training, Dr. Ben-Othmane obtained board certification in neurology from the American Board of Psychiatry and Neurology (ABPN). The ABPN is a not-for-profit corporation that was founded in 1934 as a method of identifying qualified specialists in psychiatry and neurology. Furthermore, he is board-certified in headache medicine by the United Council of Neurologic Subspecialties (2004), as well as in CT and MRI through the American Society of Neuroimaging (2008).

Neurology is a branch of medicine dealing with disorders of the nervous system. Neurology deals with the diagnosis and treatment of all categories of conditions and diseases involving the central and peripheral nervous systems, including their coverings, blood vessels, and all effector tissue, such as muscle.

Dr. Ben-Othmane is licensed to practice medicine in the state of Virginia. A member of the American Academy of Neurology and the American Headache Society, Dr. Ben-Othmane has been named a Top Doctor in Hampton Roads Magazine on multiple occasions.

Outside his professional commitments, Dr. Ben-Othmane enjoys spending time with his wife, living near the coast in Virginia, running, and traveling.

Learn more about Dr. Kamel Ben-Othmane:Through his findatopdoc profile, https://www.findatopdoc.com/doctor/2242516-Kamel-Ben-Othmane-Neurologist, or through Riverside Neurology Specialists, https://www.riversideonline.com/find-a-doctor/find-a-doctor-results/kamel-ben-othmane

About FindaTopDoc.comFindaTopDoc is a digital health information company that helps connect patients with local physicians and specialists who accept your insurance. Our goal is to help guide you on your journey towards optimal health by providing you with the know-how to make informed decisions for you and your family.

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Kamel Ben-Othmane, MD, a Neurologist and Headache Medicine Specialist with Riverside Neurology Specialists - Pro News Report

When Luc LeBlanc received a phone call from his family doctor in March 2021 telling him he had a neurological illness and it was terminal his world crumbled.

"I knew I had something wrong cognitively," said LeBlanc, 41, of Dieppe, N.B. "I was falling, I was having multiple episodes of passing out and cracked three ribs. I reached out to my family doctor to say, 'We need to push neurologists any way possible because I can't live like this.' "

LeBlancbecame part of a cluster of 48 New Brunswick residents diagnosed with a neurological condition of unknown cause, a medical enigma dubbed a "mystery illness."

He kept pushing, however, for a second opinion and last week travelled to Toronto for an appointment at the University Health Network's Krembil Brain Institute.

After about 16 hours of assessments over three days with neurologists and neuropsychologists, he had some answers.

"The good news for Luc is that we can say that he doesn't have this rapidly progressive neurodegenerative disease," said Dr. Lorraine Kalia, a neurologist and scientist specializing in Parkinson's disease and movement-related disorders.

WATCH| A patientdescribes his symptoms:

Kalia is quick to caution that "all we can speak to is Luc," noting he is the only person from those in the cluster whom they've assessed. There's no doubt LeBlanc has a lot of neurological difficulties, she said, but they are likely related to a concussion he suffered in 2018, as well as anxiety he has been dealing with throughout his life.

While last week's diagnosis gave LeBlanc some understanding of his own condition, questions remain about whether the cluster actually exists.

Those questions also come as concerns heighten inside and outside the provincial government over longstanding shortcomings many see in New Brunswick's health-care system.

"We need more recruitment. We need better retention of physicians, but we also need the dollars put in place to enhance the health-care system," said Mark MacMillan, president of the New Brunswick Medical Society, the professional association for doctors in the province.

"Access could certainly be improved. Wait times are too long for many appointments that need to be seen by a specialist, but that's not just a problem in New Brunswick," he said, noting it's a problem across Canada that needs to be addressed by increasing health transfer dollars from the federal government to the provinces.

From late 2019 onward, LeBlanc and 47 other New Brunswick residents were identified as being part of a cluster of patients with a "progressive neurological syndrome of unknown etiology." That cluster was first identified by Moncton neurologistDr. Alier Marrero. The people range in age from 18 to 85. They are men and women, with the majority living in Moncton.Others arein the Acadian Peninsula and on the north shore, close to the Quebec border.

The first case was retroactively discovered by Marreroin 2015. By 2019, there were 11 cases displaying similar symptoms. By the following year, the count doubled to 24. By June 2021, 48 people were identified, the vast majority by Marrero. Six of the cluster had died.

In March 2021, news of the cluster made headlines after a memo from the province's chief medical officer of health to physicians and other health-care professionals was leaked to the media.

"If you have patients who you feel may meet the case definition for this novel neurological syndrome, please send a clinical referral to Dr. Alier Marrero at the Mind Clinic," the memo said. The clinic is run out of The Moncton Hospital.

The symptoms were similar to Creutzfeld-Jacob disease (CJD), a rare and fatal brain wasting disorder, and included visual hallucinations, muscle twitching and aggression.

An interim reportreleased last week by the New Brunswick government revealed the number of deaths had risen from six to nine and that there were no known factors such as food, place of home or work that could be linked between the cases.

Autopsies for those who died revealed findings including Alzheimer's, Lewy body dementia and cancer, and, according to Health Minister Dorothy Shephard, represent a group of "misclassified diagnoses."

Shephard told The Fifth Estateprovincial health officials reporting that there was an unknown neurological illness "was really a little premature." In her opinion, she said, she does not believe there is a cluster.

More clinical review is necessary, she said, and another report will be released in January.

As LeBlanc watched Shephard speaking last week, he said the province needs to be open-minded to a new disease.

"They don't want to create panic, but they create panic."

At the centre of the unknown illness is Marrero, a neurologist in Moncton. Born in Cuba, he received a medical degree from Universidad Nacional Pedro Henrquez Urea in the Dominican Republic in 2000. He completed his residency in neurology at Laval University in Quebec in 2010.

That same year, Marrero moved to Moncton, where he helped identify the province as having some of the highest rates of multiple sclerosis in Canada. Marrero had concerns about how New Brunswick was relatively underserviced in terms of MS research and the difficulty sufferers had in gaining access to care.

His work led him to cross paths with scientists at the Creutzfeldt-Jakob Disease Surveillance System an arm of the Public Health Agency of Canada. With their input, dating back to 2019, he began developing a case definition for a "progressive neurological syndrome of unknown etiology" theunknown illness he was diagnosing in patients.

While Marrero accepts he could be wrong, he says he is convinced there is a cluster and that the diagnoses from the autopsy findings should not rule that out.

Watch |N.B. neurologist wants patients to feel hopeful:

"Complex problems don't have easy solutions," he said in an interview with The Fifth Estate. "I am confident we will find the cause and we will find a way of dealing with it, hopefully a treatment, hopefully a way of avoiding it."

Jill Beatty, who was told her father was part of the cluster, describes Marrero as an empathetic and calm presence in their storm. Her trust in Marrero has not wavered.

"We were so scared, and we had no idea what we were dealing with."

Marrero has diagnosed 48 people, but said he is treating more than 100 patients with symptoms at the Moncton clinic.

"As a physician, I try to open to them a door of hope that is meaningful hope. And as a scientist, I'm interested in discovering what is causing this problem."

Like many people in the cluster, LeBlanc has had difficulty navigating the health-care system.

Three years ago, he was in a car accident and suffered a concussion. He began experiencing mobility and balance issues, muscle spasms and brain fog. His world spiralled downwards, and he hasn't worked since. He had to wait two years to see a neurologist.

"I think that demonstrates a lack of access to neurology that we all experience across the country," Kalia said after LeBlanc's assessment in Toronto.

As part of LeBlanc's earlier treatment, he did physiotherapy for at least seven months, but saw no improvement. A visit to his physician landed him in Nova Scotia to see an eye doctor specializing in head trauma. He was given prism glasses and told to go to a specialized physiotherapy facility in Amherst, N.S.He had one appointment and then COVID-19 hit. His remaining appointments were virtual.

"It just wasn't the same."

In interviews with The Fifth Estate, several people within the cluster and those who wonder if they have the unknown syndromedescribe long waits to see specialists. Often, they feel they are dismissed by practitioners and left with nowhere to turn.

A discussion paper released by the New Brunswick government earlier this year outlines a need for better patient-centred care, including shorter wait times for surgery and faster access to appointments.

The report said while 90 per cent of New Brunswickers have a family doctor, only 55 per cent are able to get an appointment within five days.

As his cognition declined, LeBlanc said he couldn't get a clear diagnosis or a practitioner who had the time to "look at the full picture. Somebody dropped the ball somewhere."

LeBlanc met Marrero in January 2021, and by mid-March he was told he was part of the cluster.He started making end-of-life plans: extra life insurance, care for his children and lookingfor a coffin.But one thing stood out to him: he was not physically declining like others in the cluster.

He had reached out to one of the youngest, Gabrielle Cormier, 20, and could see the intensity of symptoms was different. He could drive and dress himself. His memory wasn't too bad. He could go to the gym and lift light weights.

Meanwhile, Cormier, of Dalhousie Junction, once an avid skater with dreams of becoming a pathologist, was walking with a cane and sometimes relying on a wheelchair.

The difference between his symptoms and Cormier's, coupled with his family's doubt, left him uncertain. LeBlanc asked Marrero why he was a "confirmed case."

"It's kind of hard when, you know, a lot of people are saying it's all in your head, but is it?"

When asked by Radio-Canada's Enqute about LeBlanc's case, Marrero said he could not comment.

While LeBlanc had his doubts about being part of the cluster, some neurologists, including Dr. Valerie Sim, believe a detailed review of cases of those identified with the unknown neurological illnessis paramount.

"My goal in raising skepticism is simply to balance the discussion," said Sim, a professor of neurology in the Centre for Prions and Protein Folding Disease at the University of Alberta. She said an open mind must be kept to the possibility that there isn't a syndrome.

The extreme age range of those who were diagnosed with the unknown illness and their broad symptoms make it impossible to conclude anything, she said.

"Are we doing them a disservice by assuming that they all fit into the same pocket? Or could they actually have separate things which each might require different investigations and different treatments?"

Kat Lanteinge, a Toronto-based public health advocate, has concerns that while the N.B. government focuses on the lack of links between cases, the search for a root cause will be overlooked.

"When you start drafting a narrative and you start shutting out the experts, so no science can happen, those are massive ethical boundaries that are being crossed."

Marrero, however, still believes a cluster exists.

"I'm ringing a bell," he said, quoting his favourite musician, Leonard Cohen. "He said there is a crack in everything, that's how the light gets in. It's a truth for anything new in science. And I hope [the light] will."

While LeBlanc may have another diagnosis, that doesn't eliminate so many questions that exist around the mystery illness.

"It's hard for us to make conclusions about what we weren't a part of," said Kalia, the Toronto neurologist. "We didn't see Luc as a team two years ago. And so it's hard to know what kind of pieces to the puzzle his physicians had at that point in time to make that conclusion."

As for LeBlanc, he describes a weight lifting off his shoulders. He has gone from believing his life was ending to imagining possibilities. "It's a big shock."

He also vows to continue supporting people he has met through a social media support group for those who have received a diagnosis of the unknown illness, for their friends and family and others who believe they may have it.

"I'm lucky. I was dying. Now I'm not. But I want to help and support people if they want to talk."

See the original post:
He was told he had the N.B. 'mystery illness.' But a 2nd opinion says no as doubts swirl about diagnoses - CBC.ca

Embargoed until 7 a.m. CT / 8 a.m. ET Wednesday, Nov. 3, 2021

DALLAS, Nov. 3, 2021 The American Heart Association (AHA), a global force for longer, healthier lives, will present its 2021 Basic Research Award to Costantino Iadecola, M.D., FAHA, of Weill Cornell Medicine in New York City, in recognition of his outstanding work in cerebrovascular biology, particularly in the areas of stroke and dementia. He will receive the award during the Presidential Session on Sunday, Nov. 14 during the AssociationsScientific Sessions 2021. The meeting will be fully virtual, Saturday, Nov. 13 through Monday, Nov. 15, and is a premier global exchange of the latest scientific advancements, research and evidence-based clinical practice updates in cardiovascular science for health care worldwide.

Dr. Iadecola is a board-certified neurologist whose research focuses on ischemic brain injury, neurodegeneration and cognitive impairment. He is the director and chair of the Feil Family Brain and Mind Research Institute and the Anne Parrish Titzell Professor of Neurology at Weill Cornell Medicine in New York City. He was selected for the Associations 2021 Basic Research Award in recognition of his research in the areas of cerebrovascular biology, stroke and dementia.

Dr. Costantino Iadecolas ground-breaking research in neurology, including developing the concept of the neurovascular unit to better understand the causes of stroke and dementia and opening more possible methods of treatment, makes him a true leader at the forefront of his field, significantly impacting how we think about prevention, diagnosis and treatment of neurovascular and neurodegenerative diseases, said Association President Donald M. Lloyd-Jones, M.D., Sc.M., FAHA. Im thrilled to honor him, his work and his commitment to neurovascular research.

Dr. Iadecola is recognized to have pioneered and validated the concept of the neurovascular unit, a widely accepted notion that neurons and cerebrovascular cells work together to maintain the health of the brain. This concept inspired new research on mechanisms that regulate cerebral perfusion and on how their failure causes brain diseases. His discovery of the cerebrovascular effects of the amyloid-beta peptide and tau established that neurovascular dysfunction is an early biomarker for Alzheimers disease. His research demonstrates a relationship between innate immunity and the deleterious effects of hypertension on neurovascular regulation and cognitive function and found that high-salt diets cause dementia through the Alzheimer protein tau, bridging the age-old gap between neurovascular and neurodegenerative diseases. Dr. Iadecolas work also details how microbiota of the gut can influence a patients susceptibility to ischemic stroke.

I am honored to receive the Basic Research Prize, which I humbly accept on behalf of my mentors, colleagues and collaborators, said Dr. Iadecola. I am grateful to the American Heart Association for the continued support I received since the very beginning of my clinician-scientist career.

Dr. Iadecola earned his medical degree from the University of Rome, Italy. He first came to the U.S. in the 1980s as a post-doctoral fellow in neurobiology at Weill Cornell Medicine, New York. After completing a neurology residency at New York-Presbyterian/Weill Cornell Medical Center in 1990, he joined the University of Minnesota Medical School as an assistant professor in Neurology before returning to New York City as a professor of neurology and neuroscience at Weill Cornell Medicine, where he has been for the past 20 years.

His work has earned accolades from the AHA, the American Academy of Neurology, the National Institutes of Health and the Alzheimers Association. He was previously recognized by the Association with its 2009 Willis Lecture Award, given in recognition of his contributions to the role of prostaglandins and nitric oxide in stroke damage and to the role of cerebral blood vessel dysfunction in Alzheimer's disease. He won the 2015 Excellence Award in Hypertension Research from the Association in recognition of his research connecting hypertension and Alzheimers disease. He was honored again by the Association with a 2019 Distinguished Scientist Award to recognize his research contributions to cardiovascular disease, stroke and dementia. Additionally, in 2011 the Alzheimers Association recognized Dr. Iadecola with the Zenith Fellow Award, which is prestigious worldwide recognition in Alzheimers research.

His research has been documented in nearly 400 papers published in peer-reviewed journals and he is listed by Clarivate Analytics as one of most highly cited researcher in the world in his field. He has been a guest editor for theHypertension,CirculationandProceeding of the National Academy of Sciencesjournals and a member of the editorial boards forCirculation Research,Journal of Cerebral Blood Flow and Metabolism,Cerebrovascular Diseases,Annals of Neurology,Cellular and Molecular Neurobiologyand theInternational Journal of Stroke.(Note:Hypertension,CirculationandCirculation Researchare published by the American Heart Association.)

Additional Resources:

The Association receives funding primarily from individuals; foundations and corporations (including pharmaceutical, device manufacturers and other companies) also make donations and fund specific Association programs and events. The Association has strict policies to prevent these relationships from influencing the science content. Revenues from pharmaceutical and biotech companies, device manufacturers and health insurance providers and the Associations overall financial information are availablehere.

The American Heart AssociationsScientific Sessions 2021is a premier global exchange of the latest scientific advancements, research and evidence-based clinical practice updates in cardiovascular science for health care professionals worldwide. The three-day meeting will feature more than 500 sessions focused on breakthrough cardiovascular basic, clinical and population science updates in a fully virtual experience Saturday, Nov. 13 through Monday, Nov. 15, 2021. Thousands of leading physicians, scientists, cardiologists, advanced practice nurses and allied health care professionals from around the world will convene virtually to participate in basic, clinical and population science presentations, discussions and curricula that can shape the future of cardiovascular science and medicine, including prevention and quality improvement. During the three-day meeting, attendees receive exclusive access to more than 4,000 original research presentations and can earn Continuing Medical Education (CME), Continuing Education (CE) or Maintenance of Certification (MOC) credits for educational sessions. Engage in Scientific Sessions 2021 on social media via#AHA21.

About the American Heart Association

The American Heart Association is a leading force for a world of longer, healthier lives. With nearly a century of lifesaving work, the Dallas-based association is dedicated to ensuring equitable health for all. We are a trustworthy source empowering people to improve their heart health, brain health and well-being. We collaborate with numerous organizations and millions of volunteers to fund innovative research, advocate for stronger public health policies, and share lifesaving resources and information. Connect with us onheart.org,Facebook,Twitteror by calling 1-800-AHA-USA1.

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Originally posted here:
Costantino Iadecola, MD, FAHA, of Weill Cornell Medicine to be recognized with the American Heart Association's 2021 Basic Research Prize - EurekAlert