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Website Helps Patients Solve Medical Mysteries

NEWBURYPORT (CBS) – Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old Newburyport mom struggles to sit up. “It’s really, really horrific,” says Diana as she describes the excruciating pain in her neck and back. Diana has been diagnosed with Ehlers-Danlos Syndrome. It’s a complicated genetic condition that weakens connective tissue leaving the patient in constant pain. But, Diana is convinced something else is wrong. “I’ve been diagnosed with contradictory things depending on which doctor you talk to.” Desperate for answers, Diana posted her case on the new website CrowdMed.com. “We’ve had some pretty dramatic success stories. In some cases we’ve solved a case in just a few weeks that had stumped doctors for years,” boasts Jared Heyman the founder and CEO of CrowdMed. Anyone can submit a medical mystery on CrowdMed and anyone can sign up to be a medical detective. Those detectives then collaborate on the best possible diagnosis. “It’s much more efficient and much more cost effective than having a patient bounce from specialist to specialist. Which is typically how it’s done in the traditional medical system,” says Heyman. Patients can even offer rewards to the detectives who get it right. Beth Israel Deaconess Medical Center doctor urges caution before logging on, “You could get some scary information. You could get some useful inf...
Source: WBZ-TV - Breaking News, Weather and Sports for Boston, Worcester and New Hampshire - Category: Consumer Health News Authors: Tags: Health Local News Seen On WBZ-TV Syndicated Local Watch Listen Beth Israel Deaconess Medical Center CrowdMed.com Doctor Ehlers-Danlos Kate Merrill Medicine Patients Source Type: news

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Source: BMJ Comments - Category: General Medicine Source Type: forums
Authors: Ficke JR, Moroski NM, Ross SD, Gupta R Abstract Patients often seek nontraditional forms of treatment, including alternative/complementary medical options, such as chiropractic care and acupuncture, to meet their personal needs. In the United States, interest has grown in methods to reduce pain and improve function through Ayurvedic medicine, which uses plant-based supplements, such as turmeric. Traditional allopathic medicine attempts to provide patients with evidence-based therapeutic regimens for their musculoskeletal conditions. Integrative medicine often is used to prevent and manage the sequelae asso...
Source: The Journal of the American Academy of Orthopaedic Surgeons - Category: Orthopaedics Tags: J Am Acad Orthop Surg Source Type: research
There is a saying that being poor is expensive. From personal experience, I know this to be true. But I think it also needs to be said that, especially in the United States, chronic illness can be quite expensive as well. In fact, there is a huge intersection between poverty and disability/illness. As with many intersections, it is a chicken-or-egg scenario, difficult to determine which is begetting which. But one thing is clear: there are often blind spots about these expenses in the medical community and how they can impact chronically ill people already struggling with finances. Recently I attended a seminar on the topi...
Source: Harvard Health Blog - Category: Consumer Health News Authors: Tags: Health Health care Health policy Pain Management Source Type: blogs
I have always been accident-prone. It wasn’t unusual for me to suddenly lose my balance while walking down an even-paved path as though someone had slid a banana peel in front of me. I’d slam down hard on the ground, skinning knees and elbows. I once fell off a boardwalk on my bike into a swamp, my body casting an impressive outline in the reeds — like a cartoon character who has run through a wall. My body was often a landscape of bruises and scabs, while most of my dishes were doomed to break at some point, causing consternation among my roommates. The dishes were just some of the casualties of my clums...
Source: Harvard Health Blog - Category: Consumer Health News Authors: Tags: Health Managing your health care Source Type: blogs
This report also discusses increased prevalence of migraine, idiopathic intracranial hypertension, Tarlov cysts, tethered cord syndrome, and dystonia, where associations with EDS have been anecdotally reported, but where epidemiological evidence is not yet available. Chiari Malformation Type I (CMI) has been reported to be a comorbid condition to EDS, and may be complicated by craniocervical instability or basilar invagination. Motor delay, headache, and quadriparesis have been attributed to ligamentous laxity and instability at the atlanto‚Äźoccipital and atlantoaxial joints, which may complicate all forms of EDS. Discopa...
Source: American Journal of Medical Genetics Part C: Seminars in Medical Genetics - Category: Genetics & Stem Cells Authors: Tags: Research Review Source Type: research
Chronic widespread musculoskeletal pain is a cardinal symptom in hypermobility type of Ehler Danlos Syndrome (EDS type III). The management of pain in EDS, however, has not been studied in depth.A 30 year old female, known case of EDS, presented to the pain clinic with complaints of severe upper back pain for 6 months. Physical examination of the back revealed two myofascial trigger points over the left rhomboids and the left erector spinae. Local anaesthetic trigger point injections were given at these points, followed by stretching exercises under analgesic cover for the first week.
Source: Journal of Bodywork and Movement Therapies - Category: Physiotherapy Authors: Tags: Case report Source Type: research
Chronic widespread musculoskeletal pain is a cardinal symptom in hypermobility type of Ehler Danlos Syndrome (EDS type III). The management of pain in EDS, however, has not been studied in depth.A 30 year old female, known case of EDS, presented to the pain clinic with complaints of severe upper back pain for 6months. Physical examination of the back revealed two myofascial trigger points over the left rhomboids and the left erector spinae. Local anaesthetic trigger point injections were given at these points, followed by stretching exercises under analgesic cover for the first week.
Source: Journal of Bodywork and Movement Therapies - Category: Physiotherapy Authors: Source Type: research
We report a case of a 46 year old smoker who had developed multiple aneurysms of the aorta in both the thoracic and abdominal parts and was incidentally diagnosed on work-up of a chronic back pain associated with venous prominence on left side of chest and left arm. PMID: 26591150 [PubMed - indexed for MEDLINE]
Source: Journal of the Association of Physicians of India - Category: Journals (General) Tags: J Assoc Physicians India Source Type: research
Just when you thought your brain could unwind on a Friday, you realise that it would rather be challenged with some good old fashioned medical trivia…introducing Funtabulously Frivolous Friday Five 120 Question 1 What rheumatological condition does Rembrandt’s Scholar have? + Reveal the Funtabulous Answer expand(document.getElementById('ddet1210722826'));expand(document.getElementById('ddetlink1210722826')) Scleroderma He has a pinched nose, tight mouth, pale face with a malar flush, his hands are puffy and the joints on his right thumbs are swollen. Could this be Scleroderma? [Reference] Question 2 When Ra...
Source: Life in the Fast Lane - Category: Emergency Medicine Authors: Tags: Frivolous Friday Five collapse dentist FFFF hands Kluver-bucy syndrome melanoma pleural collapse rachmaninoff rachmaninov Rembrandt scleroderma TB teeth temporal lobe Source Type: blogs
Background: Many individuals with Ehlers-Danlos Syndrome (EDS) are hypermobile, suffer from long term pain, and have complex health problems. Since these sometimes have no objective physical signs, individuals with EDS sometimes are referred for psychiatric evaluation. The aim was therefore to identify the level of anxiety and quality of life in a Swedish group of individuals with EDS. Methods: A postal survey in 2008 was distributed to 365 members over 18 years of the Swedish National EDS Association and 250 with EDS diagnosis responded. Two questionnaires, the Hospital Anxiety and Depression Scale (HADS) and SF-36, were ...
Source: BMC Musculoskeletal Disorders - Category: Orthopaedics Authors: Source Type: research
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