Guillain-Barre Syndrome

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    LEMS Advocates: Never Accept ‘I don’t know’ When Looking for Answers

    Navigating a rare disease diagnosis can be challenging and is often filled with many doctors appointments, trial and error with different treatments and misdiagnosis. One condition, Lambert-Eaton Myasthenic Syndrome (LEMS), is known for being difficult to diagnose, as it can mimic other health conditions. LEMS is a neuromuscular condition that primarily affects the muscles in the arms and legs, causing weakness that makes walking difficult. People diagnosed with LEMS typically also have small cell lung cancer, which is why receiving the correct diagnosis early is so important. To better understand the misdiagnosis journey faced by people living with LEMS, The Mighty reached out to three LEMS advocates about their experience. Meet Ashley, a nurse who has lived with LEMS for five years: Ashley was 25 when she first experienced symptoms, beginning with chronic acid reflux. A GI doctor diagnosed it as acute stress and recommended yoga and deep breathing. Not surprisingly, that didn’t help: “After that, I started noticing more weird symptoms. My pulse shot way up. I was living with a baseline pulse of 160. And at work, it would go in the 200s.” After passing out at work, she met with a cardiologist who diagnosed postural orthostatic tachycardia syndrome (POTS) , a neurological condition that affects blood flow. That just didn’t seem right to Ashley. She got a neurology referral, and was lucky enough to be matched with one who had some experience with autonomic nervous system disorders. Eventually the truth came out. Ashley’s diagnosis journey took a full year, and she feels very fortunate. “I know people that have gone 10 years waiting for a diagnosis. So I truly consider myself to be lucky.” Because her employer was understanding, Ashley has kept working. Her colleagues were a different matter. “They were not nice to me at all about it. They ostracized me, they told me that if I was that sick, I shouldn’t be a nurse. They didn’t think it was fair that I got special treatment.” COVID-19 complicated her work life, too. Because of her health, Ashley doesn’t care for COVID patients, which struck her colleagues as unfair. “That was honestly one of the hardest things for me to deal with. It was heartbreaking.” With treatment, though, Ashley’s LEMS symptoms have improved.. One of her most important treatments is regular IV therapy and she’s careful to stay on top of it. She learned how important it was during a medication shortage two summers ago: “I went without treatment for three months and that quickly humbled me because I realized how much I needed it. I actually am at the point where I look forward to getting it because I know, once I get it, I feel so much better.” She advises patients to not give up when an initial diagnosis doesn’t ring true. “Make sure you advocate for yourself, make it known how much your life has changed, and don’t give up until you get a diagnosis. Find a doctor who’s like you – someone who just won’t give up. Sometimes it feels impossible, but it’s not. There will always be someone down the road to help you or to give you an answer.” Meet Emily, a nurse and 20-year LEMS advocate: Emily’s first sign of something strange came in November 2000, when she was 35 years old. “I was normal when I went to bed, but I woke up with severe back pain. I had what I described as heaviness in my legs. I first thought I had a back injury. Over the course of eight months, I progressed to almost complete muscle loss and atrophy of my lower and upper extremities.” Also, a nurse, Emily simply couldn’t keep up with her work duties. “I went from seeing 10 patients a day to only being able to see two, I would get extremely fatigued, I would not walk places because I couldn’t make it. So, it was a pretty quick progression.” Emily was her own worst critic; it was her family and co-workers who pushed for an answer. “I was like, ‘Oh, just tough it out,’ but the pain just got too bad. My family noticed though. They said, ‘Look, ou need to go see somebody.’” Her primary care doctor prescribed physical therapy (PT), assuming she had a back injury. Not only did PT not help, her symptoms actually became worse. “My family ended up taking me to the ER. The doctor recognized that I had absent reflexes, and the way that I walked was not normal. And so, he was actually worried that I might have had multiple sclerosis.” MS was the first incorrect diagnosis. She also went through diagnoses of myasthenia gravis and chronic inflammatory demyelinating polyneuropathy (CIDP) and even conversion disorder, a psychological condition in which a person has unexplainable blindness, paralysis or other nervous system symptoms. “Basically, they said I was ‘making it up.’” It took eight months to find the right answer. Finally, a neuromuscular specialist diagnosed her with LEMS. “I was relieved but scared. [I had so many questions:] Am I going to die? Can I be a mom? Will I ever get better?” Unlike Ashley, infusion therapy made Emily sick, giving her terrible headaches and nausea. Medications that work directly with acetylcholine and calcium, two important players involved in LEMS, are now the cornerstones of Emily’s treatment. Her advice for people with newly diagnosed LEMS? “Don’t give up. Demand a higher level of care. Don’t accept ‘I don’t know’ as an answer, because that’s not okay.” Meet Julianna, a 30-year LEMS veteran: Juliana has no problem describing her life with LEMS: “It’s like a roller coaster ride that you can’t get off. That’s my best description – very high highs and very low lows. I have been on my deathbed, in hospice twice already- those are the lowest lows. And my high highs are when I make a comeback, like I’m doing right now. Just feeling my strength again, trying to focus on making my muscles stronger.” Juliana was on a Colorado hiking trip in 1992 when something started to feel different. . “I was just having a really rough time with my hike down some of the rocks, and took a couple of falls. I thought I didn’t give myself enough time to adjust to the altitude. When I got back to work, I  just walked down the hallway and fell. I thought maybe my heel caught in the carpet.” When she fell a second time, a co-worker stepped in. “She was married to a doctor, and she said ‘I’m going to get you in and seen by a doctor and have you checked out because there is just something not right.’” Juliana was also prescribed physical therapy. “I started having such a hard time getting out of the whirlpool bath. My body went limp and they could barely get me out of there. My next step was to see a neurologist, and this is where I got really fortunate because this guy really dug for me.” She had the familiar first misses: MS and myasthenia gravis. When those tests came back negative, Juliana got a referral to a muscular dystrophy clinic, where the truth was revealed. An electromyogram, which measures a muscle’s response to electrical simulation, painted a clear picture of LEMS. The diagnosis came eight months after her first fall. “I’m one of the longest [diagnosed] living patients with LEMS. It’s been 30 years now.” Juliana gives huge credit to a multidisciplinary neurology team at the University of Colorado, which manages her care. Getting the right team together isn’t easy, but it’s a must, she said. “You want someone who’s knowledgeable and who’s going to dig, dig into your case. If you’ve got a good advocate on your side, then you’ve got it made. Those people are really hard to find. But you need a team.” As a senior member of the LEMS community, Juliana has shared her experience and wisdom with hundreds of other LEMS patients. “I have a Facebook group that’s international with over 1,300 people in it –we’ve been able to bring people all over the world together.” Juliana wants people to know that while a LEMS diagnosis is a tough turn in life, it’s not the end. “This condition is treatable [and finding a treatment that works for you can be] life-altering.” Like Emily and Ashely, Juliana says being tough and persistent is the key to getting a diagnosis and being your own proactive health manager. “You need to hang in there and keep being persistent. Be willing to do some educating with your healthcare provider, because a lot of times you’re the first person that they’ve ever seen with LEMS.” Looking for LEMS resources? Check out LEMSaware to find a downloadable health care provider discussion guide, symptom tracker and more! Learn More

    Community Voices

    Help!!

    <p>Help!!</p>
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    Why Guillain-Barré Syndrome Awareness Can Save Lives

    May is GBS Awareness Month. If you have never heard of this disease (and even if you have), please take this opportunity to learn more about it, and share what you’ve learned with others. It could change someone’s life. Guillain-Barré syndrome (GBS), discovered in 1916, is a rare (approx. 1 in 100,000 per year) neurological disease in which the body’s immune system attacks the nervous system by destroying the myelin sheath surrounding the nerves. This impairs the ability of signals to travel to and from the brain, resulting in multiple symptoms throughout the body, such as vision issues, difficulty swallowing, lack of coordination, and prickling/burning sensations, etc. The primary symptom is weakness, which varies in severity from mild to complete paralysis, where the individual is unable to breathe independently. It can affect anyone of any age, and it usually develops after a viral or bacterial infection. In some very rare cases, it can develop within a few weeks after immunization. Symptoms begin to appear in the lower part of the body, and work their way up to the head. Recovery may take six months to a year, and sometimes longer. Most people fully recover, but some individuals may experience permanent residual weakness or neuropathy. There are three main variants of GBS. They are all autoimmune disorders, and present with similar but slightly different symptoms: –Miller Fisher syndrome (MFS): Discovered in 1956, this rare (1-5% of GBS cases) variant is milder than GBS, and symptoms begin in the head and work their way down the body. Recovery begins 2-4 weeks after onset, and most people fully recover, but may have residual weakness. -Bickerstaff brainstem encephalitis (BBE): Discovered in 1951, this variant is extremely rare (less than 0.01 per 100,000 per year), and more severe than GBS. Symptoms usually begin in the head and work their way down the body. It is difficult to diagnose because standard tests and scans often show no abnormalities. BBE often results in an acquired brain injury, long-term impairments, and recovery may take years. –Chronic inflammatory demyelinating polyneuropathy (CIDP): Classified as a disease in 1971, it is considered the chronic counterpoint of GBS, with patients sometimes spontaneously recovering, and sometimes relapsing throughout their lifetime. There is no known cause for CIDP, but it sometimes develops in conjunction with other polyneuropathies. It is the most common treatable chronic neuropathy, but it is as rare as GBS (0.6-1.7 per 100,000 per year). It is extremely difficult to diagnose because there are no tests to definitively identify it, and the symptoms are similar to the symptoms of many other conditions. In December of 2009, after receiving a series of vaccines, I developed BBE, and was placed in a medically induced coma for six weeks. I spent 18 months in the hospital and two years in rehab, relearning everything from eating to toileting to walking. The long and difficult journey was made all the more terrifying by the lack of awareness and information about the disease. That is why I write this story now. Not to share my experience in all its horrifying detail. Not to inspire or commiserate or garner sympathy. But to help spread information and awareness so that hopefully, in the future, people who develop these diseases won’t experience what I did. When the first symptoms (blurred vision, weakness) began to appear, I visited the ER at my local hospital. The tests and scans showed no abnormalities, so I was sent home after being told to stop spending so much time on the computer. I returned half a dozen more times with new and worsening symptoms (double vision, dizziness, poor balance and coordination, difficulty swallowing). Each time, further investigation turned up nothing, and I was sent home with a new diagnosis that was, at best, an educational guess (atypical migraine) and at worst, nothing more than a blow-off (psychosomatic response because of my mental illness). The doctors doubted me, my husband began to doubt me, and I even began to doubt myself. But I intuitively knew something was wrong, I could just “feel” it, and I was becoming very worried. It wasn’t until I attended an appointment with my GP (the same one who administered the vaccinations) that the situation was taken more seriously. She sent me to a neurologist that day, who sent me to a neuro-ophthalmologist. I returned to the neurologist a couple of days later (now with one eye paralyzed and unable to swallow my own saliva), and was immediately admitted to the hospital. Over the next week, I was examined by several doctors from various disciplines, went for dozens of scans, tests, and X-rays, had countless vials of blood taken, endured two lumbar punctures and an NG tube insertion. As the results kept returning “inconclusive” or with no abnormalities, and my health continued to deteriorate, the doctors scrambled to research my symptoms and potential links. My family and I felt helpless and frightened. Nobody had ever seen this before. The neurologist suspected it was an autoimmune disorder, but with no answers from the tests or scans, and very little medical information about my specific combination of symptoms, the diagnosis was a mystery. My neurologist finally made a tentative diagnosis, an “educated guess” if you will, based on my symptoms, their progression, and the research he had done. I was given intravenous immunoglobulin (IVIg) in the hopes of slowing and reversing the disease. It was too late, however, and a few days after Christmas, I went into respiratory arrest. I was intubated, placed on a ventilator, and put in a medically induced coma. During the next six weeks, the battle was all about keeping my body alive as it struggled through multiple crises. My family waited anxiously, and rushed to the hospital each time the doctors thought I might be losing the battle. Each time they asked questions, the answers they received were vague and uncertain, inevitably followed by “we just don’t know that much about this disease.” When they were asked to sign a DNR, the doctors were unable to tell them what the “odds” were of whether I might recover and what condition I would be in if I did. It was a terrifying, heartbreaking, confusing time for my loved ones, made so much worse by the lack of information, expertise, and prognosis. When I emerged from the coma, cognitively sound but physically damaged, there were still more questions than answers. I spent the next several years puzzling and surprising doctors as I recovered in ways no one thought possible, yet not fully recovering in other areas. Today, I am disabled, I use a power wheelchair, and I live a fairly independent life in a Family Care Home (my own suite inside my caregiver’s home, where she lives with her husband and two sons). I have learned that if my symptoms were taken seriously earlier, the IVIg might have been effective in reversing the course of the disease. If I hadn’t needed to be ventilated and put in a coma, I wouldn’t have suffered so many life-threatening complications. If there was more information and awareness about GBS and its variants, the doctors may have been able to treat me sooner and more effectively. If there had been more research and case studies to reference, we may have had clearer answers and possible prognoses. If…if…if… This is why GBS awareness is so important. Awareness = Interest = Funding = Research. We cannot control whether we develop a rare disease like GBS, but with early intervention and proven treatments, we may be able to slow or reverse its course and lessen the severity. With research, we may discover new ways to detect the disease, rather than making a diagnosis (an educated guess) based on symptoms alone. With trials and case studies, we may be able to predict the short and long-term effects of the disease, and doctors may be able to give clearer answers. And all of this would mean the patient may be diagnosed and treated sooner, lessening the severity of the disease, shortening the recovery time, improving the prognosis, and easing the fear and anxiety of everyone involved. Learn more: Guillain-Barré syndrome: Miller Fisher syndrome Bickerstaff brainstem encephalitis Chronic inflammatory demyelinating polyneuropathy

    Community Voices

    Help

    I got diagnosed in December 2014, I have never recovered. I don’t know what’s wrong with me. I have intense flare ups regularly that feel like I’m getting GBS all over again.
    #GuillainBarreSyndrome

    1 person is talking about this
    Community Voices

    Help

    I got diagnosed in December 2014, I have never recovered. I don’t know what’s wrong with me. I have intense flare ups regularly that feel like I’m getting GBS all over again.
    #GuillainBarreSyndrome

    Community Voices
    Community Voices

    Doctor With Zero Clue

    I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!

    2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
    -and-
    I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?

    I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.

    Any wisdom/thoughts you may have are appreciated. Sending good energy to you.

    #ChronicInflammatoryDemyelinatingPolyneuropathy
    #ChronicInflammatoryDemyelinatingPolyradiculoneuropathy
    #GuillainBarreSyndrome
    #NeurologicalDisorder
    #BurningMouthSyndrome
    #Undiagnosed
    #UndiagnosedDiseaseNetwork
    #UndiagnosedRareDisease
    #RareDiseaseDay

    3 people are talking about this
    Community Voices

    Fell out of bed this morning. I broke my fall by smashing my face into corner of night table. Now I’m bedridden again. #ChronicPain

    7 am I was getting into bed and somehow wound up on the floor. My wife heard things falling and ran in to help. Been using ice on worst bruising, especially my jaw. Now in bed. Hurts all over. Made #PostPolioSyndrome and #GuillainBarreSyndrome worse - dizzy, lost positional awareness, double vision, and every muscle is in pain. Otherwise I’m doing fine.

    5 people are talking about this
    Community Voices

    Newbie

    I was diagnosed at the end of 2019 with Guillain-barre syndrome. The pain had subsided from how badly it was in the beginning, however, it still keeps me up all night. I'm glad to have been recommended this group so I don't feel so alone #GuillainBarreSyndrome

    7 people are talking about this
    Community Voices

    Life long complications from COVID-19 - encephalitis

    There is a lot to that paper that I’m sharing with you today, but you get the main idea by reading the first 3 small paragraphs 😉

    It is a small percentage of people going on to develop complications, but with the number of COVID-19 cases rapidly nearing 37 million of cases worldwide, even small percentages translate in a greater number of people being affected by complications #Encephalitis #Stroke #Encephalopathy #GuillainBarreSyndrome . Those are people who are likely to have life long effects on their health 🙁.

    We tally up the number of deaths from COVID-19, but I think that the nature and number of people developing complications on the back of this infection should also be monitored. Those who go on to live with effects of complication will further affect the health system...those numbers should be taken into account too right? 🤔

    www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)3...

    1 person is talking about this