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  • Chiari Malformation (A Mother’s Story)
    the hospital we began to see slight improvements in Jeff s condition Hands and feet were warm for the first time in four years and his eyes which had been very drooped began to open wider Four months after the surgery Jeff began to take a few steps during his physical therapy session The therapist s comments indicated that Jeff s muscles were beginning to show signs of improved tone and increased strength His weak frail voice grew stronger and lights and noise were once again tolerable Heart rates and blood pressures normalized He began spending more time out of bed as his energy level increased He progressed from wheelchair to walker to forearm crutches to unassisted walking to treadmill exercise There were tears among the therapists who having once assisted with passive range of motion pool therapy were now witnessing restored health to his lifeless body It has now been two years since the surgery and Jeff once again has a life He drives takes walks rides his bike and has friends Having missed all four years of his high school brought about the tremendous task of somehow making up those credits Since he no longer fit in the age group of those students at school he elected to make up those years through post secondary options at the local Ohio State University Academy Amazing as it may seem Jeff is now ranked number one in the senior class due to his academic achievement at the college level His greatest desire it to have the opportunity to attend a reputable college and get an education that will allow him to be of service to others Words are inadequate to express our heartfelt gratitude for Dr Weingart s skill and compassion He saw what other doctors did not see did what others would not do and gave hope when others gave up By having the courage to perform a surgery that was somewhat controversial because he felt in his heart it was the right thing to do a young man now has restored health and hope for a future Thank you Dr Weingart for being God s hands in fulfilling Jeff s scripture of hope For I know the plans I have for you declares the Lord plans to prosper you and not to harm you plans to give you hope and a future Jeremiah 29 11 In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets

    Original URL path: http://www.dinet.org/index.php/community/member-stories/49-chiari-malformation-a-mother-s-story (2016-04-26)
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  • So That's Why I Used To See Stars ...
    ideal situation but I had so many doctor visits while suffering from asthma that I really needed a reprieve from those doctor s appointments To make a long story short the online cardiologist informed me that if my heart was ok it sounded like I was experiencing low blood pressure symptoms I did more research on the Internet and came across this POTS website which has been a blessing to me because I have all of the symptoms of POTS Bending over makes me dizzy raising my arms over my head might make my heart rate fast and standing up in the morning or standing up from a chair too fast are very bad news At the moment I am trying to get off coffee and seem to have things under better control as I have been drinking lots of water and consuming salt The tall glass of water does seem to be an immediate solution whenever I forget to stand up slowly Of course the day does get better as you progress but from now on I will be sure to carry a very large bottled water with me wherever I go In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain

    Original URL path: http://www.dinet.org/index.php/community/member-stories/48-so-that-s-why-i-used-to-see-stars (2016-04-26)
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  • Julie's Story
    normal life on Wellbutrin Inderal and Synthroid I have had neck problems since a car accident in 1977 after hitting my head on the windshield I have noticed numbness and tingling in my arms and more difficulty in swallowing in recent months I have also developed some numbness in my lower legs An MRI has shown a bulging disk on C5 and C6 My MRIs are in the process of being sent to a neurosurgeon DR Heffez in Chicago So off I go to another adventure December 2002 update On May 14 and 15th of 2002 I went to Chicago to see Dr Dan Heffez for testing After all the testing Dr Heffez gave me the results I remember one thing very clearly he said you have a very bad neck very bad I really did not expect that at all Really I was shocked I ll tell you why When I got into a car wreck in 1977 I never got the proper treatment I think I must have brought up my neck pain to probably 5 different doctors over the years ALL THOUGHT IT WAS TENSION You know ANXIETY I must have had some HORRIBLE medical file following me for years could have dated back to my childhood So through all these years I learned to live with it and I became used to it I thought maybe I was overreacting and was imagining the pain I d never connected it to the autonomic nervous system problems I was having But as I looked back it all started to make more sense Dr Heffez diagnosed me with two herniated disks on C5 C6 and C7 In addition he diagnosed cervical stenosis which I was born with He also diagnosed a mild chiari malformation I failed most all of the neurological testing My cervical spine had severe pressure on it and was now also causing increasing numbness in my legs and arms A normal space for the spine is 16mm to 20mm I HAD LESS THAN 5MM VERY SEVERE Dr Heffez told me I needed surgery very soon He said a mild fender bender causing any kind of whiplash could paralyze me from the neck down He said it was a tragedy that I d gone so long with such a bad neck I believe that with such pressure on my spine my body was not able to metabolize the chemicals I was exposed to at my old employer My theory is that spinal stenosis plus chemical exposure could equal POTS I had surgery June 27 2002 The surgery took 4 1 2 hours Dr Heffez replaced the herniated disks with donor bone fused 5 6 and 7 together and added a titanium plate It was quite rough coming out of the anesthesia but after 18 hours or so I was through the worst of it Right after the surgery I was already showing improvement My hands and feet were warm Most of the numbness was gone 2 weeks

    Original URL path: http://www.dinet.org/index.php/community/member-stories/47-julie-s-story (2016-04-26)
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  • Barb's Story
    increased symptoms 3 wearing a cervical collar significantly reduces symptoms 4 I know a number of other people with symptoms and diagnoses similar to mine who have benefited significantly from these surgeries 5 I know a well respected neurosurgeon who reports on the significant improvement of his colleague s daughter through this procedure and he is impressed with the work of these doctors 6 From what I have read I have a congenitally small canal and foramen magnum to begin with and the further narrowing due to degenerative bone spurs occurred at the same time as I experienced a worsening of symptoms 7 Most of my symptoms occur when I am vertical so I think that gravity may play a role i e I already have a smaller then normal foramen magnum and some tonsillar herniation indicated when I am lying down during an MRI scan I believe that when I stand up the effects of gravity cause increased tonsillar herniation and therefore much greater brainstem compression which leads to significant symptoms Additionally I believe that immune system dysfunction may contribute to the problem in the neck and brainstem area due to an inflammatory process i e when I am exposed to something that I am sensitive to there is an inflammatory reaction that may cause some brainstem swelling which could further narrow the space and cause further nerve compression Prior to August 2000 I spent a lot of time in the hospital due to dehydration and passing out I have not been hospitalized since then due to some measures that I have taken The two most important measures I believe are the wearing of a soft cervical collar and some dietary changes The collar stabilizes my neck thus reducing the degree of nerve compression Dietary changes include the elimination of all dairy products all gluten containing products wheat rye oats barley and beef Additionally I limit simple carbohydrates high fat foods and artificial additives and colorings There is some scientific evidence especially for the elimination of the dairy products as the protein in dairy casein has been shown to increase symptoms in a significant number of people with these conditions I also take an antihistamine to help reduce histamine levels as I have learned via Johns Hopkins that histamine dilates blood vessels something that will lower blood pressure and is therefore not a good idea for me Johns Hopkins recommends aggressive treatment of allergies in people with these syndromes Other measures that I have taken that seem to have helped are the supplement ginger to reduce nausea that is pretty well eliminated at this time and digestive enzymes with larger meals or meals that are higher in fats and proteins I am much better then last year but remain pretty disabled I am hopeful that the surgery will further reduce symptoms for me and can add to this story after I go through that process Feb 2002 To update the above I had surgery on 11 29 01 with

    Original URL path: http://www.dinet.org/index.php/community/member-stories/46-barb-s-story (2016-04-26)
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  • Wish Upon a Star
    school Right before college I was diagnosed with fibromyalgia a muscle pain disorder chronic fatigue Hashimoto s thyroiditis an autoimmune disease where my body attacks my thyroid gland sinus node tachycardia my heart races without any reason that I can figure out and neuropathy a loss of sensation in my hands and feet All of these problems have made college life very difficult for me I struggle to get my class work done which leaves little time for a social life I have not yet been on my first date and sometimes I wonder if anyone will ever want to date someone with so many problems But then I try to focus on today right now and the things I can control I m learning to be an advocate for myself and to speak up when I need to not easy when you are painfully shy From the sounds of it my medical problems seem to play a big part in my life but that is actually far from the truth They are a part of who I am but I am so much more than a bunch of diagnoses I still try to do all of the things that I enjoy like listening to music writing working with children and collecting frogs even though I am actually terrified of the real ones It is not easy growing up with a chronic illness But as a result of all my experiences I have learned who my real friends are I have become even closer to my mom my best friend of all And I have come to the realization that though I wish there were cures for my problems I know that regardless I am OK and that when I wish upon a star many of my wishes can still come true Update Hooray just finished my second year at Vanderbilt On the medical front my heart condition has officially been diagnosed as POTS postural orthostatic tachycardia syndrome which is related somehow to the Chronic fatigue syndrome I ve also acquired some new diagnoses involving an assortment of knee problems including arthritis and chondromalacia Unfortunately these require braces PT and meds and may require surgery if the less invasive things don t work The new labels for my problems donï ½t really change anything I am still me no matter what diagnosis they place on it and my life continues on no matter what It is more a comfort knowing that there is a name names for what is going on and that someone believes me there is nothing worse than doctors that refuse to listen or say it s all in my head As far as I am concerned the labels are just convenient ways for doctors to share information on medical conditions I am not a lupus a fibromyalgia a POTS an insulin resistance an arthritis I am a person with lupus a person with fibromyalgia a person with POTS etc and they are only a small part

    Original URL path: http://www.dinet.org/index.php/community/member-stories/45-wish-upon-a-star (2016-04-26)
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  • Sandra's Story
    a little stool with me everywhere I am not able to function at all without proAmitine and florinef It is a struggle to do anything when I am upright as I have to sit every few minutes I had to give up my job and I had only 2 more years until early retirement I had to move out of state as I need the assistance of my family I can no longer drive I was fortunate enough to be able to go to the Mayo Clinic and was in a study for midodrine proAmitine Since my nerve damage is permanent the virus attacked the nerves I am at the mercy of researchers to find a cure I think it is important for people with dysautonomia to not give up hope Even though everything becomes an effort make that effort I have made new friends since this found love and started a new hobby making jewelry I try to help other people as much as possible You can always find someone that is worse off that you If life hands you a lemon make lemonade In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs

    Original URL path: http://www.dinet.org/index.php/community/member-stories/44-sandra-s-story (2016-04-26)
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  • Dave's Story
    how to adjust so I could workout bike and swim again Discovering where the fatigue wall is with exercise has also been important There have been times when I was bedridden that I really needed to push beyond that wall to get back some orthostatic tolerance Diet also seems to be very effective for me I have stopped eating sugar yeasts wheat and dairy which has maximized my energy and decreased bowel problems Grazing throughout the day instead of eating large meals has also helped My philosophy has always been to give my body the best environment to heal itself be that with meditation exercise or diet I have learned many lessons the hard way as there was not a lot of research on POTS at that time I also did not have a doctor who knew enough to instruct me on what to do or how to do things Finding the NDRF was one of the most helpful things for me It had others who were going through the same challenges and I found good advice on how to manage the illness Support and learning about various medications and tricks are some of the most valuable tools you have to deal with this disorder I think a competent doctor who specializes in autonomic disorders is probably a better asset However I have never had access to one of those doctors I don t think I will ever know what caused my POTS onset In addition to mono I also had a neck injury and was under a great deal of stress both personally and professionally I have been lucky enough to have a year or so of a remission when I returned to my old lifestyle The pushing of my body mentally and physically I believe brought a return of POTS So I have learned to surrender to my new life and look for the warning signs that I am overdoing Today I am about to return to work after another neck injury and huge exacerbation of POTS I know great improvement is possible as I have had it in the past and know others who are greatly improved Although I don t think there are any magic answers I know I have learned so many lessons from having POTS and it has made me a stronger individual In the words of MLK The ultimate measure of a man is not where he stands at times of comfort and convenience but where he stands during times of challenge and controversy In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission

    Original URL path: http://www.dinet.org/index.php/community/member-stories/43-dave-s-story (2016-04-26)
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  • One of the Lucky Ones
    spent lying down I just did not feel normal I still had this incredible need to constantly drink water I had spells of tachycardia everyday My fingers still tingled and felt numb My chest still felt as if it were burning I often felt wired I had become highly sensitive to chemicals I could not stand strong smells especially perfumes Nor could I stand bright lights or loud noises I woke up each morning with my heart racing My muscles twitched a lot Sometimes I was short of breath I experienced frequent nausea I didn t sweat anymore My temperature was often low Some days I just could not warm up even huddled under blankets And while I often felt cold I discovered I could no longer tolerate heat A hot bath or room caused my heart to go into tachycardia Even splashing hot water onto my face caused my heart to beat too fast Some days I felt famished others I had to remind myself to eat I noticeably lost weight Black dots frequently clouded my vision I grayed out for a few seconds at a time I would have to sit down very quickly when I grayed out because I felt lightheaded and faint It seemed everything in my body was failing all at once People kept asking me what was wrong Inevitably I told them a few of the bizarre symptoms I was experiencing I never even got close to telling them all Who would have believed me Who would have believed that so many things could have gone wrong inside of me all at once By now I had come to accept that my doctor and the cardiologists did not know what was wrong with me I knew that whatever I had was rare And so I stepped off of the doctor carousel and began my own search on the Internet I eventually came across a web site about a disorder called postural orthostatic tachycardia syndrome I had many of the symptoms listed for this disorder and sought to find more information I contacted the National Dysautonomia Research Foundation and learned so much from the founders Linda and Dan Smith They helped me find a dysautonomia specialist who gave an explanation for my mysterious illness Eight months after the onset of symptoms I was officially diagnosed with orthostatic intolerance It took about a year but with lots of prayers and a modified lifestyle I slowly began to recover from POTS I am now able to work again I feel vibrant and full of life again Some patients with POTS don t ever improve but I did I am grateful for the many prayers and support I received I know that I am one of the lucky ones Never stop searching for answers never give up hope Update In 2003 the mystery surrounding my development of POTS was solved I was diagnosed with Classical Type Ehlers Danlos syndrome People with Ehlers Danlos syndrome EDS are born with

    Original URL path: http://www.dinet.org/index.php/community/member-stories/42-one-of-the-lucky-ones (2016-04-26)
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