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 email@example.com
Dr. Satish R. Raj MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
Q. I currently suffer from small fiber sensory neuropathy and MSA. Over the last several months I have been experiencing intense dreams that do not seem like dreams, more like hallucinations. When I awake I am usually terrified and continue to hallucinate. I usually fall back to sleep within seconds or minutes. When I finally awake to start my day I am extremely disoriented as the hallucinations begin to fade. Within a minute or so I am fine, just a bit shaken.
I initially attributed these experiences to Methadone which I began taking just prior to the hallucinations. However, my wife is concerned that they may be another symptom of MSA rather than a side effect of the Methadone.
My neurologist hasn’t a clue. He has recently advised me to find a specialist as he is out of his element. Any thoughts?
-- Thank you, Darrin Duhamel
A: Hallucinations can definitely be seen in MSA patients. - Dr Satish Raj
From DINET: We recently published a link on our site to new information for patients living with MSA - https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet The website may be a good resource for you to learn more about the illness.
Amer Suleman, MD, FSCAI, FHRS
The Heartbeat Clinic
Adjunct Professor, UT Dallas
Q: Is it typical to have high cortisol and high norepinephrine? I have been diagnosed with Hyperadrenergic POTS. What can I take to lower the Cortisol? Thank you, Kay Mcatee
A: Unfortunately this question will require a physician evaluation to be answered fully. However, I am not familiar with a relationship of hyperadrenergic POTS and high cortisol. - Dr. Suleman
Q: Six months ago I began having episodes of lightheadedness that last about 90-120 seconds, I also began having frequent bouts of sweating above my level of spinal cord injury. The sweating occurs almost every day, lasting sometimes for 10 - 15 minutes and other times 5 or 10 hours. The bouts may occur intermittently or continuously throughout the day and night but not while supine. The sweating is not due to autonomic dysreflexia, which I know because I can stop it by lying down or fully tilting my wheelchair. Also, it occurs when my blood pressure is low, high and normal. The lightheadedness has not ever occurred while I am sweating. I have had a 48 hr EEG, a brain MRI, and a spinal MRI & CT scan, a sleep study showing mild sleep apnea but no arrhythmia. I have consulted 2 neurologists, a physiatrist, electrophysiologist and a pulmonologist to no avail. Thank you Ed Kopelson
A: Unfortunately, this question also requires a physician evaluation. However, I would consider doing a TST (thermoregulatory sweat test). - Dr. Suleman
Nicholas G. Tullo, MD, FACC, FHRS
New Jersey Center for Fainting
West Orange, NJ njfaint.com
Q: When I was in my early 20s I was diagnosed with pots but since then it improved but then when I hit 30 I was diagnosed with an autoimmune disease called Sjogren's. I am having major autonomic dysfunction and considering going back on the medication to try to make it better. I am having extremely low blood pressure very low. But I'm also having very low heart rates, especially at night. Is there a medication to help with raising my blood pressure and helping with my major fatigue. My doctor had mentioned going back on midodrine at my last appointment but I did not go through with it yet. I've heard midodrine can lower pulse even more and I remember back in my twenties it gave me bad headaches. But honestly, I'm up for whatever may help this debilitating fatigue and autonomic dysfunction spells.
Thanks for any advice that maybe can help me or I can talk to my doctor about! - Stacy Tucker Willie
A: Dear Stacy,
POTS (Postural Tachycardia Syndrome) is a “syndrome,” which is a group of symptoms that tend to run together in certain patients. It is not really a disease, so it generally occurs because of some underlying reason… the challenging part of caring for POTS patients is to try to figure out what that reason is and correct it as best as we can.
The symptoms of POTS are varied and include palpitations, fatigue, lightheadedness, brain fog, headaches, chest pain, GI symptoms, sweating problems, and others. However, the one finding that ties it all together is a significant increase in heart rate with standing WITHOUT a significant drop in blood pressure. POTS is one specific sign of autonomic dysfunction, but many things can cause POTS, including Sjogren’s Syndrome.
Sjogren’s Syndrome is a poorly understood rheumatological disease that results in inflammation in certain tissues of the body, mostly connective tissues. It is characterized by dry eyes, dry mouth, dry thick skin, frequently with GI symptoms and often associated with joint and muscle pains and other systemic symptoms. Early forms of Sjogren’s may be difficult to diagnose. Blood tests are often negative in about 30% of patients. Sometimes the only way to diagnose it is with a biopsy, usually of the inside of the lip.
It’s conceivable that Sjogren's was the problem all along and led to the initial symptoms of POTS. Maybe you went into remission but now the underlying disease has resurfaced and so your POTS symptoms have returned. I would certainly consider restarting midodrine if your blood pressure is low and you have symptoms from that. Usually, midodrine does not cause excessive slowing of the heart unless your blood pressure becomes too high. You should definitely see a doctor experienced in treating POTS, since there may be other medical treatments that could improve your quality of life. Ultimately, treating the Sjogren’s is likely to improve your symptoms the most.
Best of luck!
Dr. Nicholas Tullo
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After spending most of my life challenging myself with physically demanding activities - I became attached to a cane 15 years ago after back surgery. Following surgery, I spent months believing I would fully recover. Then during a follow-up visit, the doctor cleared his throat, multiple times, and said, "You mean no one's told you?" I won't bore myself or you by repeating all the details of the rest of that conversation, except to say - no, no one had told me.
So, fifteen years have passed. After much urging by my husband to get something more attractive, in year seven, I finally replaced the metal hospital cane. The old cane was part of the web of denial I had spun around myself. To replace the "temporary" hospital cane with a more permanent one meant a permanent condition. You get the gist.
Anyway, I have moved on and mostly adjusted. I say "mostly" because after the original adjustment to being disabled from my back, I had the additional job of adjusting to life after dysautonomia - a little something I picked up after my second back surgery in year nine. Still, I have enjoyed myself during the past fifteen years and I have refocused on the things that I can still do instead of the things I will never do again. I keep a quote by Stephen Hawking in a frame in my home. He said - “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” I take this advice very seriously.
But when I think about adjusting, there is one thing that I will never manage to accept - how a portion of the world has adjusted (or not) to me. A while ago, I was having lunch with my friend in a local restaurant. We were having a great time catching up and having "girl time." In the midst of our fun, an older man (a stranger) approached our table and just stared. When I asked him what he wanted, he said, “What's with the cane? Did you fall or something?"
When I didn’t answer right away, he went on to say, “Oh, I just ask because you look too young for a cane and I thought you might need some help." Keep in mind, I am 48 years old, so “too young for a cane” is lost on me. And beyond that, I was eating lunch at the time - not trying to run out of a burning building! So being in need of help at that moment was lost on me also. I must have looked less than appreciative, because, after a few vague offers to help, he then said in a scolding tone, “I am trying to be sympathetic," and went off in a huff. My friend was horrified and felt my embarrassment as people at nearby tables stared. Did I mention how loudly he offered his help?
We enjoyed the rest of our lunch entertaining ourselves with comebacks for next time. Feel free to come up with your own, but, here were our favorites:
1. Oh, this? I carry it for protection.
2. Oh, I hurt myself during extremely athletic sex - thanks for asking.
3. Don't tell anybody but I just carry it to get one of those pretty blue handicap placards for my car.
I wish I could tell you that this was an isolated encounter with one rude man, but it's not. It has happened enough times that I have lost count - it happens in supermarkets, at meetings, airports - in fact, anywhere. And when I do not give details - frequently, the person asking refuses to let it go. They may turn it around to indicate that they only ask because they want to help or offer sympathy. They imply that I am rude not to thank them for their concern.
I am perplexed by this. Why would people think that asking intrusive questions is allowable when related to an assistive device? Would that same man have thought it acceptable to ask about other things he notices looking at a stranger? Would it be okay, to walk up to a bald man and say "So, why are you bald? Was your father bald too?" Would it be acceptable to walk up to an older person eating dessert and say “Too much sugar can lead to Type II Diabetes, especially in older people, did you know that?” Of course not. Most reasonable people would know that questions like that would be considered very rude and embarrassing in some instances. So, the difference seems to be related to the device.
Perhaps these people think they are asking about the device, not the person, so it's allowable. They fail to see that the device is a part of the person’s health record, not to be shared with strangers. Also, the device, whatever it is, is a part of the person’s permanent “look.” All the time - everywhere. Drawing attention to the device as a curiosity is intrusive. It may be embarrassing and it may exacerbate any feelings of self-consciousness that the person may already have.
That day, in that restaurant, I'm sure that there were other people facing chronic conditions or illnesses. They enjoyed their lunches despite more hidden conditions like diabetes, HIV, high blood pressure, colitis, heart conditions, etc. Just because a person has a wooden appendage or some other device, it does not make it acceptable to ask personal questions that are clearly tied to their health.
On behalf of all of us who go through life with canes, wheelchairs, oxygen, leg braces, etc., I offer a reflection. If people would examine why they are asking, before they ask, it might save everyone some discomfort. Curiosity is not a reason to intrude even in the guise of helping. When I arrived home that night, my husband heard my story and pointed out that the man was trying to "reach out" and "trying to be nice," - he believed the man just "felt sorry" for me. That may be true, maybe that was his intent. But the real truth is, all he accomplished was to interrupt my lunch and make me feel bad.
I appreciate immensely when someone sees me struggling to balance my cane while carrying groceries and trying to open a door. The good Samaritan who runs up and grabs the door for me is a hero. And the person who offers me a seat at the DMV when the line is long is a saint. Those are the things that folks can do when coming across a person who wears their medical condition on their sleeve.
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Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen.
The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon her daughter’s death, the desk was passed on to me. It was the only item inside an otherwise empty desk drawer. The note having become stuck years earlier inside the drawer's metal track may have stayed hidden had I not noticed it years later. Once found, I was determined to read it, so I tugged on it hard several times before I managed to pull it loose, tearing it a little. I unfolded it with great curiosity and found that my great grandmother had written:
"Things always work out for the best for those who make the best of how things work out."
That's all it said. But really, that's all it needed to say. Her signature appeared underneath.
I’m no longer a teenager and have now lived enough decades to understand my great-grandmother 's wisdom. Her advice has stood me in very good stead, particularly with regard to my dysautonomia. Although my dysautonomia symptoms began eighteen years ago, it was only two years ago that they rather abruptly worsened and closed the door on my physical mobility.
Suddenly, I found myself unable to stand for more than five minutes at a time, which remains true to this day. I also found myself with time limits regarding how long I could sit up. This change in my health forced me to lie supine for chunks of hours each day. Boredom quickly set in. I viewed all those hours of having to lie down as nothing more than unwanted, frustrating interruptions in my day.
Then I remembered that motto: “Things always work out for the best for those who make the best of how things work out.” I set my mind to exploring how I could make the best of this immobility situation I now found myself in. I decided that one way to make the best of things might be to find something productive to do with my hands while I was lying down.
One idea that came to me was to paint. I had dabbled with painting on and off since childhood. Painting while lying down seemed like a logical idea for fending off the boredom inherent in being forced to lay down so much. It seemed like it might be worth a try. If it didn’t work out, I would come up with another idea.
So… my intention was to follow my great grandmother’s motto and try to make the best of how things had turned out. I was basically hoping that painting might serve as a solution to the problem of feeling frustrated, bored, and unproductive.
However, it didn't take long for the painting activities to quickly assume a life of their own. They immediately transformed my hours of frustration and boredom into hours of delightful fun. I no longer feel frustrated or bored at all when the time comes for me to lie down. To my surprise, there have been other unforeseen, positive, ripple effects that have come from painting again. I’ve formed new friendships with some other local artists (who are very accepting of my physical limitations). I have been pleasantly surprised at being approached by a few people interested in buying my art. None of this would have happened if not for my attempts to follow that motto.
I look back now and realize that before following my great grandmother's words, my energy was focused on the frustration of the situation instead of the betterment of it. I viewed having to lie down as an interruption of all-those-things-I-wanted-to-be-doing-instead, and that was that. Being constantly frustrated with the situation had put my mind in a negative place.
In sharp contrast, I now view the daily lying down episodes as “Okay, now it’s time to shift gears and paint for a while.” The hours swiftly fly and I am having fun while waiting for my body to reboot and allow me to sit/stand up again. I have my great grandmother’s motto to thank for this.
Remembering to “Make the best of how things turn out” is, for me, a very powerful perspective shifter. It has helped me tremendously in adapting to my new physical limitations. When it comes to adjusting to my dysautonomia symptoms, I now proactively challenge myself to seek out ways to respond to the question “How can I make the best of this?”
This shift in perspective has definitely helped me to maintain a happier life despite my physical limitations and life-altering circumstances. I feel lucky and grateful to have found her words when I did. Likewise, I hope you are able to find my great grandmother’s motto helpful as you work through your own unique dysautonomia challenges. Those of us with dysautonomia are each a little bit different but are also so much the same. You are not alone.
Editor's note: Missy's art can be seen on her website
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At age thirty-eight, Onva was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), after living with thirty years of undiagnosed symptoms. She remembers fainting as early as first grade, often when standing in the lunch line at school. Her mother took her to several doctors and she went through a myriad of tests. At one point she was mistakenly prescribed anti-seizure medication, and at another time her mother was told that she was just an anxious child.
For most of her life, Onva thought of her symptoms as “normal” because her mother, grandmother and several extended family members all suffered from fainting, presyncope, hypermobility and/or gastric complications. However, when her son began to develop similar symptoms, she decided that “This is going to stop with his generation, or at least I am going to find out why it's happening and make life easier for him.”
Her online research led her to believe that both she and her son had POTS, and that he needed a tilt table test to be officially diagnosed. Unfortunately, local doctors said he was too young to be tested for dysautonomia. Instead of giving up, she sought a diagnosis for herself with the belief that she could, at least, help him manage his symptoms if she better understood her own.
Onva’s diagnostic process is all too familiar to those of us with POTS. She incurred high medical bills, she was put on medications like antidepressants and steroids that exacerbated some of her symptoms. Physicians regularly dismissed her as anxious, as from her childhood. Her turning point came when she found a primary care provider who helped wean her off medications that were ill-suited for her and guided her in seeking a true diagnosis.
Once diagnosed, she learned to increase her fluid and salt intake once she was able to attribute her symptoms to POTS. She also understood her extreme heat intolerance, and the source of her life-long fainting, especially when she stood in long lines. Though her grandmother had passed, she was able to understand some of her symptoms too. She figured out why her grandmother had pre-syncope symptoms when standing in the church choir, and how she needed to wake up several hours early to give her body time to acclimate. Most importantly, an official diagnosis enabled her to find an autonomic specialist who was willing to treat both her and her son.
Though Onva’s physical abilities are limited by POTS, she feels that these shared experiences of illness have given her tremendous love and gratitude for her close friends and family. She has been able to support her family by working in a salon with an owner who understands she may need sick days, a cool environment and later work hours. Most importantly, her son’s symptoms gave her the strength to be a warrior for her family. In this way, she has helped both herself and her son get proper treatment, and she has brought the gift of “knowing” to all of her family members who have lived with undiagnosed symptoms. This experience has shown her that, together, her family can overcome anything.
Onva, as an individual with Dysautonomia, as well as a parent of a child with POTS has strong insight into this disorder. She encourages us to shed the shame we have about our bodies. If we need to sit, or lie down, to alleviate symptoms we should do so, regardless of where we may be. She also encourages parents to communicate openly and often with their children who have chronic illness. This communication, she says, provides children with the confidence to share all of their symptoms. Parents are, then, able to become the strongest possible advocates for their children. Finally, her lifelong experiences with POTS have helped her remember that while doctors are important partners, we know ourselves and our needs best.
“It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve.
My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was enough of a rest to bring back some clarity because I remembered the phone in my pocket. But before I could even call, I looked up and there he was. He had come back for me. I was shaken to the core. This event became a part of my history and one of the factors in my dysautonomia diagnosis.
A few weeks earlier, Dr. X had ordered several head scans and a round of memory testing. The results were mixed. Physically there was nothing wrong that they could see in the MRIs but the memory testing showed I had some problems with recall and acuity. I knew I could not figure out how to put a tray of colored blocks into patterns fast enough. Sigh. She said, “ Too early, it’s too early for that for you”.
We talked about my life, what I had done, what I would like to continue doing and what was special to me. I needed to get my brain juices flowing again. I am not sure how she got me to think this was my idea but Dr.X is a master of beneficent persuasion. I told her I read every day, I love adult coloring and taking photos with my cellphone. I had set my fate; it was like that great line from Ghostbusters, “You have chosen the destroyer.” Well, I had chosen.
She liked me reading every day but suggested it should be non-fiction and subjects that are new to me. She liked adult coloring but only if I drew my own line drawings to fill in. Photography is a great hobby, but I needed to take photos in unfamiliar places. She also threw in making things by hand. I liked the thought of all of this and I accepted it. I think that accepting was the most important part. She recommended (with twists), what I already loved to do. Since I will be doing this forever, it is important to love your therapy.
I love gardening and horticulture and fully embraced university extension factsheets - short and sweet, info-laden pages about plants, animals, or foods related to our lives and environment. I average about a half-dozen a week. It’s amazing how fast you can tear through a few pages about the flowers, herbs, or pollinators you love. There are a zillion topics to choose from and all non-fiction. My other joy has been cooking new recipes from old cookbooks. Again, reading.
My thrift-store cookbook addiction has finally paid off. Right now I’m learning how to cook for my freezer which equals a fast and healthy dinner instead of take-out when I want to crash instead of cooking. Last week I froze polenta wedges and bags of cooked chicken strips I made on the electric grill. The week before I did some sweet potato puree and bags of chopped onions. I’ve got bags of frozen rice and cooked noodles tucked away. I make at least a dozen servings of each recipe so it’s worth the “spoons” I use for prep time. We’ve cut down greatly on takeout so overall this is a big plus. We eat a lot healthier and we keep our take-out money in our wallet. Please tip the cook.
Another big gain came from reading DINET’s Facebook feed. Not every article is about dysautonomia and I enjoy reading the personal perspectives. More than anything else, I’ve gotten an education in how dysautonomia affects our lives. I can now dialogue with my doctors and better explain to family or strangers what we experience.
Taking photos is easy - getting someplace new is not. My cardiologist already prescribed a daily walk -either outside or at the mall. I limit driving - no joy rides - just to the doctor or the supermarket across the street. I don’t go far. I park on top of the mall’s highest lot and took panorama shots of the skyline in the distance. I go downstairs and inside and take sienna tints of shoppers rushing by my bench. I go into to the dressing room and do a personal photo shoot of myself in fashions I would never buy. Well, not all the pieces! I take different photos of different things in different places. Mission accomplished. Each day I walk my two dogs separately (four walks a day!). I used to keep the phone in my pocket, but now it stays in my hand. I take pictures of what thrills me that moment - bark, molds, flowers, critters, clouds in the sky shaped like ducks. I usually delete more than I save - but the ones I save are keepers.
Neurotherapy can do more than give you clarity; it improves your life. You are better able to interact with people and the world again. I’ve heard knowledge is power, but in this case, knowledge equals confidence. I don’t know what I look like to strangers when I’m grasping for words. It bothers me deeply that people see me impaired. Do they think I’m drunk or witless? Am I allowed out by myself? But now, I no longer find myself searching so often for words in a conversation. I am not hesitant to speak because I can find many words in my head, not just the one I lost in thought. Being able to have a conversation go to its end is something so many take for granted. I did, too. Learning about my condition has given me a greater vocabulary. I have a larger arsenal of words and phrases to bring to mind when I am suddenly at a loss for a specific word.
In the last few months, I feel like the fog is clearing. I can recall discussions much better—I’m no longer asking my Hubs what he wants for dinner six times in a row. I think the last few months have been some of my most productive since my symptoms showed up three years ago. I’ve made advances in clarity and cognition. I can articulate better and I have more energy for “spoons” saved. We eat better and the dogs love it when I pick up that camera. And Hubs is sure happy--who doesn’t love a dinner like grandma used to make?!
Editor's note: AdultColoringBook_TrudiDavidoff.pdf Download and enjoy!
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Multiple System Atrophy (MSA)
A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001).
Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy).
MSA is a fatal illness, and patients usually die within ten years of onset.
1. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm
2. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press.
3. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382.
DINET is excited to announce partnerships with three companies - Banana Bag Solutions, The Mighty and Outcome Health. All three companies are dedicated to education and patient support for people living with dysautonomia and chronic illness.
Banana Bag Oral Solutions produces a solution that delivers essential electrolytes and vitamins in a convenient powder blend that is dissolved in water. Banana Bag recently was a part of a two day conference at Choc Hospital in California called Connecting the Dots between: EDS, POTS, Chronic Pain and Mast Cell Activation Disorder. This is just one of the ways Banana Bag is working to make an impact on the Dysautonomia community. Words from Brian Derry, the owner of Banana Bag Solutions:
The Mighty is an online community for people living with chronic illness. But rather than focus on the medical aspects of disability and illness, The Mighty strives to fend off the isolation that comes with illness by forming a safe community for people to share their stories. From their site: “real stories by real people facing real challenges” The Mighty has created a safe platform for people living with chronic illness and disability to connect, share their stories and to raise support for the causes they believe in.
DINET is just one of over 200 nonprofit allies that The Mighty has partnered with to help deliver their excellent resources to the communities they serve. From the words of Mike Porath, Founder of The Mighty about their overall goals:
In the coming months, DINET will be working hand in hand with all of their sponsors to extend awareness and education throughout the medical community and to help bring POTS & dysautonomia patients the resources & support needed to live life with chronic illness.
To learn more about our sponsors -
Banana Bag Oral Solutions - Exclusive coupon for DINET members - save on an electrolyte mix. Go to www.bananabagdrink.com and enter the Promo Code DINET25 for a special savings of 25% off. Throughout October, BananaBag will donate all profits from sales using this code to DINET in honor of Dysautonomia Awareness and DINET's work.
The Mighty - Visit The Mighty’s home page at https://themighty.com For stories about dysautonomia - https://themighty.com/?s=dysautonomia For stories about POTS - https://themighty.com/?s=POTS
Banana Bag Oral Solutions photos from the Choc Hospital, CA "Connecting the dots between: EDS, POTS, Chronic Pain and Mast Cell Activation Disorder"
DINET's Digital Wallboard (video) Screen on left and patient tablet on right:
Social Security Administration's Adult listing of Impairments: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
Social Security Administration's Childhood Listing of Impairments: https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm
Apply for Social Security Online (Adult): https://www.ssa.gov/disabilityssi/
Apply for Social Security Online (child):
Disability Secrets: http://www.disabilitysecrets.com/
Florida Woman Claims she was Unfairly Denied Unum Payments: http://www.chattanoogan.com/articles/article_29001.asp
National Organization on Disability: http://www.nod.org
Online Lawyer Source http://www.onlinelawyersource.com/social-security-disability/index.html
Job Accommodation Network: http://janweb.icdi.wvu.edu/
U.S. Department of Labor Office of Disability Employment Policy: http://www.dol.gov/odep/
Giving a Chance Foundation (for members with Chiari I Malformation, Syringomyelia, Basilar Invagination, Tethered Cord, Ehlers Danlos, Hereditary Disorders of the Connective Tissue, Pseudotumor Cerebri, etc.) http://www.givingachance.org/
Find prescription drug programs for which you may qualify: https://www.pparx.org/Intro.php
Air Care Alliance: www.aircareall.org
Angel Flight: www.angelflightamerica.org
The National Patient Air Transport Helpline: http://www.patienttravel.org/
*This page is a work in progress. New links will continually be added. If you would like to volunteer to find links to add to this page, please let us know .
Information sheets to help you prepare for your trip to the ER or to a new medical practice.
The pdfs of these sheets can be downloaded here Patient Guide - medical trips.pdf for easy printing.
Medications - current
Name dosage prescribed by to treat what symptom
NOTES: allergies and notes about reactions to meds should be detailed here.
Illnesses: (be sure to include when you had the illness, treatment for the illness and whether you completely recovered or are still being treated for this illness)
Surgeries: (date, what the surgery treated, was it successful or not? If not, what lasting complications, if any)
Specific test ranges or numbers - standard to you. HR range:
Doctor or medical professional most familiar with your illness
This crossword was developed by DINET volunteer and Board of Directors member, Trudi Davidoff based on the information and articles posted on DINET's Facebook page during the month of December. Click the link to the pdf below the image for full size. You can also print the puzzle from the link as well.
*hint - if you get stuck that's where you'll find the answers The answers are also available in the Word Bank at the bottom of the page. Enjoy while you learn.