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About edriscoll

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    Advanced Member
  • Birthday November 14

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    New Hampshire
  • Interests
    gardening, painting, cooking, sewing, reading, creating art with a variety of materials

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  1. I am one of those people with the "strange" symptoms. I have tachycardia but I also have bradycardia quite often, usually within the same episode. At first I was diagnosed with POTS, but I think that was because it was the only dysautonomia disorder they could name. After more testing and observations, the neurologist and cardiologist agree that I have "General" dysautonomia - meaning I have autonomic dysfunction and many of the symptoms of dysreflexia (I have thoracic spine damage) - but my symptoms really don't fit into any one classification. I believe there are many more people out there with a similar situation to mine who never get diagnosed because we don't easily provide checks on the list of symptoms to fit with any one disorder. Interestingly, treatment is the same in that it is all hit and miss, trial and error until you find what works for you.
  2. Hello, I'm sorry to hear your daughter is ill. Our physician database has the information for 2 specialists in Australia. We are working on adding more international listings. In the meantime, we have one in Melbourne and one in Heidelberg. I don't know the distance or how far you can travel, but if they are too far away, you can call and ask for a referral to someone in your area. Specialists treating rare disorders like dysautonomia usually know other specialists. Here is their information: Dr. Murray Esler 75 Commercial Road, Melbourne, 3004, Australia 61 (0)3 8532 1111 reception@bakeridi.edu.au Dr Chris O'Callaghan 455 Lower Heidelber Rd, Heidelberg, 3084, Australia 61 (0)3 9459 2699 There was no email included in the listing. Good luck with finding a doctor and I hope your daughter finds treatment and relief soon. For future reference, the Find a Physician database can be found at https://www.dinet.org/physicians/
  3. edriscoll

    Beat the heat

    Great suggestion MarkA. The one I had died last summer and I have been borrowing my granddaughter's fan over the winter months. But she is sure to want it back this summer. I will check out the Ryobi - I like the idea of the 18V tool battery. Thanks.
  4. Managing & Enjoying Life After reading an article, use your browser's back button to easily return to the Table of Contents on this page. Surviving the Guilt that Comes with Chronic Illness by Amy Keys The Ins and Outs of Owning and Training a Service Dog by Ellen Driscoll Dehydration by Margaret Rose Lombardi Enjoying Life at National Parks by Hallie MacDonald Beat the Heat by Amy Keys Meet the Member: Erin's Story by Chelsea Goldstein Medical Q & A - Member Questions Answered by DINET's Medical Advisors Updated - Research and News about Dysautonomia and Related Illnesses Updated - Open Recruitment Studies
  5. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Related Questions from Two Members: Question #1 from Member Bxxx: Hello, Please can you explain how someone can feel extremely lightheaded and faint when they are sitting with a completely normal heart rate and blood pressure? I understand you can still have low stroke volume and hence cardiac output, which is not measurable without invasive tests. I have heard other patients say they also feel presyncopal with normal observations, but medical professionals often do not seem to understand this. Many thanks Bxxxx Question #2 from Christina Hello, I’m a Dinet volunteer, username clb75. I have a question for the medical advisory board. Many people with Pots experience dizziness when upright even though their BP and heart rate are normal. What causes this and what are the best ways to treat this type of dizziness? - Christina Answer from Dr. Satish Raj I think that there are a couple of issues here – one of nomenclature and one of physiology. The nomenclature problem is with the word “dizzy”. It is not a medical term and could refer to two different medical problems: vertigo or light-headedness. Vertigo is where either the room spins around you or you spin within the room. This is usually not a blood pressure (or heart rate) issues but can be due to problems with the inner ear or brainstem. Light-headedness is the feeling that one is going to faint, although to a lesser degree than when actually fainting. In some languages, the term for light-headedness directly translates to “head spinning”, making it difficult at times to sort these out. The second issue, assuming that it is light-headedness that is being discussed, is physiology. Low blood pressure or a low or high heart rate DO NOT, in and of themselves, cause light-headedness. They do this presumably by altering blood flow in the brain, and perhaps the delivery of nutrients (such as oxygen or glucose) to the brain. This disruption could occur on a more local scale (within the brain) as well. Many things alter blood flow in the brain…many more than I can name. Something as simple as breathing can do so. Hyperventilation, for example, can do this. The challenge is that light-headedness is a common symptom that can be caused by many/most medical disorders. That is why, in many cases, more specific presentations (e.g. association with tachycardia or with fainting) are needed to help to narrow down the list of possibilities.
  6. By Ellen Driscoll When an animal joins your life, you receive health benefits, both physical and mental, that are far beyond what most people expect. Pet ownership has proven to have a positive impact on depression, anxiety, blood pressure, and heart rate changes, to name a few. Add all of that to the companionship, loyalty, and love they give us, and is it any wonder that 68% of U.S. households have at least one furry family member? For people living with a chronic illness, a pet specially trained as a service animal brings another priceless asset...independence. When most people think of service animals, a dog is what comes to mind, and with good reason. Dogs are the most often used species trained to be of service for disabled people. Cats, dolphins, miniature horses, monkeys, ducks, parrots, and ferrets have all been trained to perform specific tasks as “service” to the disabled. However, the legal title of “service animal” is given to different species dependent on state requirements. (1) The ADA (the Americans with Disability Act) defines a Service Animal as a dog (2) “individually trained to do work or perform tasks for the benefit of an individual with a disability including a physical, sensory, psychiatric, intellectual or other mental disability.” The tasks can be a variety of things that help a person manage their day to day lives as long as it is directly related to the person’s disability. The ADA protects the rights the disabled person has regarding housing, workplace, and other public places where a person may want and need to be accompanied by their dog. Most states have specific rules regarding inclusion and exclusion of animals, and each state’s Attorney General’s office can provide the specifics for that state. Types Not all service animals do the same things. Besides guide dogs and hearing aid dogs, there are dogs trained for Mobility Assistance and Medical Emergency Response. Service Dogs can be trained to offer both types of assistance. There are emotional support animals that provide life-changing service for their owners also. While this category of animal is not recognized as a service animal by the ADA, most states will grant qualified, well-trained emotional support animals the same access to public spaces that an ADA dog has. There is a great site from the UK about the difference between emotional support animals and Service Dogs. The site, called “Dog Owner” is a wealth of information about the benefits of dog ownership for mental and physical health - https://www.dogowner.co.uk/dogs-mental-health/ A dog trained as a mobility assistance animal may provide help such as retrieving items from the floor, giving medication reminders, pushing elevator buttons, and many other helpful tasks. Medical emergency response animals frequently referred to as “seizure alert dogs” are trained to pick up changes in their owner’s bodies or behavioral cues that can warn that an emergency is about to take place, giving the owner a chance to react safely. This type of training has been critical for POTS and dysautonomia patients. If trained well, the dog can sense pre-syncope and give an alert signal, providing the owner time to move themselves to a safe space. They will also remain at attention by their owner’s side until the person is revived and can give the “okay” signal to the dog. Anyone who has been alone and incapacitated in a public place knows the potential dangers and the difference a service animal makes in that situation. Two of the most common breeds trained for this invaluable profession are Labrador Retrievers and Golden Retrievers. (3) These breeds are smart, loyal, and known for their patience, all qualities needed for this work. However, It is vital for people to understand and accept the difference between owning a service animal and a pet. There is a good reason that the jackets that these dogs wear in public ask people not to pet or interact with them. Unlike owning a pet that you would encourage to be people friendly, a service animal needs to be focused on the disabled person solely. The distractions inherent in public places can make it difficult enough for the animal. If people are petting and playing with the dog, they could easily miss the subtle cues necessary for them to do their job effectively; to provide the service they are trained to do, the dog needs to be attached to the person they are assisting. So regardless of what method you elect to use, there is always some training needed between the disabled person and the animal. Types of Training There are many ways to bring a service dog into your life. Buy an accredited Service Dog Bring your dog to a professional company for training. Train the dog yourself. Service dog training is a very long process and can be very expensive. For a dog to become accredited, the animal must be able to respond to commands and be proficient in specific skills. They also must be able to pass the Assistance Dogs International Public Access Test. Buying an accredited Service Dog Assistance Dogs International is an organization that establishes the standards for the Service Dog industry. ADI provides links to accredited companies that meet these standards. You can search for a company on their website - https://assistancedogsinternational.org/members/programs-search/ Buying a service dog is not as easy as just picking one out. The application process is a long one with the initial inquiry form taking 6 - 8 weeks to be reviewed. If the preliminary form is approved, then the actual application is sent out. Once received, it takes another 6 - 8 weeks for a medical review board to process the application. At that point, the person wanting a dog is either approved or disapproved. If you pass to this point, the process goes forward. The average cost for a Service Dog is $25,000. Many companies will work with approved applicants on fundraising and cost options if there is financial hardship. Most programs require the disabled person to stay at the company’s training facility for three weeks to a month to train the dog and the owner and to prepare them for the public access testing. Most programs include periodic training, evaluation, and recertifications as needed. Training Your Own Service Dog Some companies provide training for disabled people who have a dog that they believe would make an excellent Service Dog. However, the personality of a great pet is not necessarily the same as a great Service Dog. The American Kennel Club offers the following list of qualities that make a dog a good candidate for service: Calm but friendly Alert but not reactive Able to be touched by anyone, including strangers Willingness to please The natural tendency to follow you around Socialized to many different situations and environments Ability to learn quickly and retain information Many companies that offer training will also evaluate your dog to see if he or she is a good fit. They may also help you find a dog that they believe will offer the best chance for success. The upfront cost of a professional program is much less than buying an already accredited dog, averaging $5,000 to $10,000. However, there is not a guarantee that the dog will pass the accreditation test the first time. Also, this upfront fee doesn’t include ongoing training or recertification in most cases. Those fees are usually in addition to the upfront costs. It is important to talk to the company or the ADI to find out about any ongoing costs required to maintain accreditation. Most professional training programs require about six months to complete all courses and prepare for the access test. Many organizations will offer training classes where professional trainers work in small groups providing the guidance needed for the owner to work at home with the dog to develop those skills. They also will offer private training that involves one-on-one instruction between the owner and the dog. There has been a recent trend toward owners taking on training without hiring a professional. There are many resources online and blogs by people who have trained their animals. On the site, “The New Mobility,” Holly Koester (4) describes the process of teaching her black lab basic obedience and additional commands before seeking the specific training her dog would need for accreditation. Koester clicker trained her dog to be proficient with “sit,” “lay down,” “stay,” as well as other basic commands. After she had full confidence in that stage of learning, she moved on to teach commands like “pull” and “push,” giving her dog the headstart toward learning the skills to offer assistance in things like opening a door or closing a drawer. Koester estimates this approach shortened the amount of time her dog Spokes needed for professional assistance training down to three months. No matter what the approach, training a service animal begins with teaching the owner. For people who don’t feel equipped to handle the basic obedience pre-training, there are companies like Top Dog located in AZ, (5) and The Dog Alliance in TX, (6) for example, that offer in-person and online classes for owners. Top Dog’s introductory class pairs owners with volunteer training assistants, and guides the owner through teaching the dog the basics and also how to understand the dog and how they communicate with you. The program goes on to the Intermediate, which begins the specific course work for assistance skills. Eventually, the owner and the dog are ready for the Assistance Dog Exam. Although the program is considerably less costly (the intro course is $200), it may not save you any time. Top Dog estimates a year and a half of training until the exam and much longer if a dog or owner doesn’t catch on to commands the first time around. The Dog Alliance provides accredited dogs as well as owner training classes. The introductory course requires an owner to take a preliminary seminar on basic obedience training and that their dog either pass that class or has instructor approval to move on to the Service Dog training class. The advanced class focuses on assistance skills and preparation for the Assistance Test. There are also training manuals and online training available to owners who have prior experience with basic command training or have owned a Service Dog before. Regardless of the path taken to get there, the goal should be to have a well-trained animal capable of passing the Assistance Test for Service Animals. Without this credential, there is always a safety risk in using an animal for mobility assistance. A Final Word Regardless of the type of training you decide to use, always check for the certification of the program and professionals you choose by researching the company through the Assistance Dogs International site - https://assistancedogsinternational.org/ This organization sets the standards for assistance animals, and trainers, as well as providing the official test for dogs to be accredited Service Dogs. It is critical to understand that even though it is costly and time-consuming to go through all the hoops necessary to have an accredited Service Dog, it is dangerous and irresponsible not to. To protect the rites of the disabled population, restaurants and other public places are not allowed to question whether an animal is accredited or not, or why they are needed. Also, there are service dog vests that can be bought online without proof that the buyer is disabled or the dog is accredited. Unfortunately, this has led to some people abusing this law as a way of bringing their pets along to places they would not be permitted. This behavior puts accredited service animals at risk and puts any disabled person in their vicinity in unnecessary danger. A Service Dog that finds a human partner as dedicated as they are to be consistent in their training, generous in their praise and affection, and focused on one another, will have a better quality of life together than they ever would have had alone. For more information on Service Animals, visit these resources: https://assistancedogsinternational.org/ https://www.ada.gov/service_animals_2010.htm https://www.akc.org/expert-advice/training/service-dog-training-101/ http://www.newmobility.com/2006/12/training-your-own-service-dog/ https://www.thedogalliance.org/training-your-own-service-dog https://www.dogowner.co.uk/dogs-mental-health/ For personal stories and to connect with the owners of Service Animals, visit: Hannah's Story: https://www.dinet.org/member-stories/lean-on-me-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/ Service Dogs for POTS - https://www.facebook.com/groups/110152023042832/ - this is a closed Facebook group, but if you send them a message to join or to get more info, they are very responsive. RESOURCES 1. Federal and State laws regarding Service Animals can be found at https://usaservicedogregistration.com/service-dog-state-laws/ 2. In rare cases, the ADA will allow for a miniature horse to be certified as a Service Animal. https://adata.org/faq/i-heard-miniature-horses-are-considered-be-service-animals-ada-true 3. AKC Service Dog Training 101, https://www.akc.org/expert-advice/training/service-dog-training-101/ 4. Training Your Own Service Dog by Roxanne Furlong, http://www.newmobility.com/2006/12/training-your-own-service-dog/ 5. “Top Dog Teamwork” from the article Training Your Own Service Dog by Roxanne Furlong http://www.newmobility.com/2006/12/training-your-own-service-dog/ 6. Service Dog Training, Out and About https://thedogalliance.asapconnected.com/#CourseGroupID=12147
  7. The discount is for new subscriptions, is this a new subscription?
  8. There is a page of our site called "Open Recruitment Studies" This list doesn't include every study out there, but it does include many of the studies specific to POTS and other Dysautonomia Disorders. You can visit the page here:
  9. There is no evidence that POTS or other dysautonomia disorders resolve because of age. And it is absolutely possible to develop POTS and other dysautonomia disorders at any age, even though POTS is more common with women during the "child-bearing" years. That being said, as DINET has been hearing from many women over the age of 50 who are newly diagnosed or in the process of being diagnosed, we have begun questioning whether the diagnosis is being complicated by age and whether the number of women with these disorders is under-reported. DINET conducted an informal survey of our members and Facebook followers who are living with different forms of dysautonomia. The survey was about diagnosis and treatment in postmenopausal women. Based on that survey, we are moving to the next step with an analysis of a questionnaire that we did over some months in 2018. We hope to explore the topic for the purpose of answering some important questions - Should treatment change as women age? How do patients and doctors track symptoms of dysautonomia vs the normal aging process? For example, with normal aging, some people develop some memory deficits, vascular issues, GI changes, etc. Will other illnesses be missed because all symptoms will be "blamed" on dysautonomia? And conversely, will dysautonomia be missed in older women because the symptoms will be attributed to older age? There are many other questions that we hope to answer over time. In the meantime, you can view the results of the 1st survey of members at this link. I believe the answers are very interesting. You can find the pdf with the results of the survey at this link:
  10. April is National Volunteer Month. DINET is 100% staffed by volunteers; volunteers who generously give some of their precious spoons to DINET so we have this community here when we need it most. Please take a moment to join me in thanking these amazing volunteers. DINET's volunteer staff: (They are listed by their member names to respect their privacy but also so that you can reach out to them on the forum if you would like to) Forum Volunteers: MomtoGuiliana Clb75 Missy M Pistol Board of Directors & Newsletter WinterSown Goldstec Edriscoll Hallie Amy Keys reannamathis Mona Social Media LaurenMlack Thank you all from all of us!
  11. I also have temperature swings so radical that I am frequently walking around the house in a sleeveless shirt with a zippered hoodie on but pulled down around my elbows. This gives me the option of getting warm quickly but cooling down quickly as well. Some days are fine but I always need to be aware of overheating and be able to respond quickly. If you are not sweating, you need to discuss that with your doctor right away. Also, remember that when you do sweat you are losing a lot of fluid and sodium, so electrolyte-rich drinks are important. One item that I discovered that has been a life saver for me, especially in the summer months, are cooling towels. They are available online or in most sporting goods stores. They are lightweight towels that come in different sizes. They stay cool and can be worn around your neck (my fave), wrapped around your head like a bandana or just used to cool your face and wrists (pressure points). There are also cooling vests that keep your core cool. I haven't used one myself, but I have heard from several people that they work quite well. But again, if you are not sweating, please consult with your doctor. Dressing in layers and taking precautions is important. Temperature dysregulation is a common symptom and can be a distressful one. But there are ways to handle it and it will get better.
  12. I'm so sorry to hear you are going through all of that. Medical issues can be so overwhelming and especially so when there are multiple issues going on at the same time. I hope you get some relief soon and some answers. Hospitals all have social work departments that have patient advocates that can really help you speak to the doctors and sort out what the priorities should be for your care. They can also help with things like rides to appointments. If you haven't done so, you may want to call the hospital where you are having your testing done or where the majority of your doctors are and explain that you don't have family available and you need help. Telling them the story you have shared with us, may help you get the assistance you need. I hope you get help soon and find some relief from your pain. Take care.
  13. Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be reversible or they may progressively worsen over time. The ANS is the part of the nervous system responsible for the function of our blood vessels, stomach, intestines, liver, kidneys, bladder, genitals, lungs, pupils, heart and sweat,, salivary and digestive glands. It is easy to see how debilitating disorders of the ANS can be since they affect so many parts of the body. The autonomic nervous system has two main divisions: Sympathetic Parasympathetic Both of these divisions are affected when the ANS is not working properly. To understand this better, it is important to understand how this works within the body. When a signal is received by the ANS from the body and the environment, it responds by stimulating processes within the body, usually through the sympathetic portion of the ANS, or it inhibits a process through the parasympathetic division of the ANS. For example; the heat in a room gets turned up. This is an external message that is received by the ANS within the body. A properly functioning ANS would respond by sending a signal causing the body to sweat. This would be a natural reaction to received stimuli. The processes the ANS are responsible for are: Blood pressures Heart rate and respiration (breathing) Body temperature Digestion Metabolism (affects weight) The balance of water & electrolytes (affecting sodium & calcium levels) Production of body fluids (affecting saliva, sweat & tears) Urination Defecation Sexual response One of the more challenging aspects to understand is that although many organs are controlled primarily by the sympathetic or parasympathetic divisions, sometimes the two divisions can have opposite effects on the same organ. For example, the sympathetic division increases blood pressure, and the parasympathetic division decreases it. Overall, the two divisions work together to ensure the body responds appropriately to different situations. (Low, Dec 2018) The sympathetic division prepares the body for stress and emergency situations - Fight or Flight. The fight or flight mechanism increases the heart rate and blood pressure (the force that the heart contracts) it dilates (widens) the airways making breathing easier. It causes the body to release stored energy and muscular strength is increased. It also causes your palms to sweat, pupils to dilate and your hair to stand on end. It slows down the processes within the body that are less important in an emergency, like digestion and urination. (Low, Dec 2018) On the other hand, the parasympathetic division controls the processes in the body during ordinary situations. Generally, it conserves and restores. It slows the heart rate and decreases blood pressure. It stimulates digestion causing the body to process food and eliminate waste. It uses energy from processed food to restore and build body tissue. Two chemical messengers (neurotransmitters) are used to communicate within the autonomic nervous system: Acetylcholine Norepinephrine Nerve fibers that secrete acetylcholine are called cholinergic fibers. Fibers that secrete norepinephrine are called adrenergic fibers. Generally, acetylcholine has parasympathetic (inhibiting) effects and norepinephrine has sympathetic (stimulating) effects. However, acetylcholine has some sympathetic effects. For example, it sometimes stimulates sweating or makes the hair stand on end. (Low, Dec 2018) The role of cholinergic and adrenergic fibers continues to be studied in dysautonomia research and particularly the role they play in the ANS function of POTS patients. Conclusion Dysautonomia is the dysfunction of the autonomic nervous system. Because the ANS does not respond correctly to the messages it receives, it results in the misfiring of the processes described above. The causes of dysautonomia are not always known. It is important to understand that although there are patients who develop dysautonomia disorders as their primary illness, there are many more who develop dysautonomia disorders secondary to other illnesses that cause the dysfunction of the ANS, such as Parkinson's Disease, EDS, Spinal Cord trauma or Brain Injury, and many others. Follow this link to read more about the mechanisms within the body associated with various types of dysautonomia disorders, Explore the Information Resources section of this site to learn more about specific disorders related to the dysfunction of the ANS. RESOURCES Phillip Low, MD, Professor of Neurology, College of Medicine, Mayo Clinic; Consultant, Department of Neurology, Mayo Clinic updated December 2018 Merck Manual, Consumer Edition, full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Image: https://www.merckmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system
  14. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. NEW: Test developed for CFS/ME to detect the reaction of immune cells and blood plasma to stress. (Pub May 2019) https://www.pnas.org/content/early/2019/04/24/1901274116 NEW: Research published by Frontiers in Neuroscience demonstrate improvements in cognitive function, as well as a decrease in HR in POTS patients after rapid water ingestion. (Pub April (2019) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465605/ New: Study released by Dr. Lucy Diss and colleagues about the effects of propofol on motility. Published in Autonomic Neuroscience. (in progress for Pub July 2019) Abstract: https://www.sciencedirect.com/science/article/abs/pii/S1566070219300426 New: Study released by Dr. Julian Stewart and colleagues discusses Postural Hyperventilation and the resulting variant POTS disorder. Pub Journal of the American Heart Association. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6064900/ New: An examination of the experimental and clinical trials conducted in the treatment and diagnosis of MSA. Pub Science Direct, Autonomic Neuroscience Vol 211 https://www.sciencedirect.com/science/article/pii/S1566070217301522 New: The Journal of Parkinson's Disease reviewed the impact of different exercise modes on people suffering from Parkinson's Disease. Pub IOS Press, Feb 2019 https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181484 Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003
  15. edriscoll


    Assistant Professor of Pediatrics Mailing address: P.O. Box 208064 New Haven, CT 06520-8064
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