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    How I Went From Normal to Rare

    Part 1 of 2 My journey with brain disease begins in 2017. I began having daily migraines that were so painful I couldn’t manage life anymore. I would still push myself and go to work every single day, even though I was in excruciating pain. When I was having migraines, they were always in the back of my head on my left side. I have been very lucky to have a doctor who always believed me when I told her that something was not right. When I went to see her about the headaches, she sent me to have an MRI of my head. I was honestly convinced that I had fibromyalgia, or some other debilitating chronic pain disorder. Imagine my shock when I received a voicemail from the doctors office, telling me they found an unknown abnormality in my brain. That is never easy news to hear, but getting it on a voicemail made it even worse.

    I found a neurologist who was able to see me fairly quickly. He did an assessment on me, and we reviewed my MRI results together. The abnormality on my brain was actually in my cerebellum, adjacent to my brain stem. The abnormality was a #CavernousAngioma . My neurologist referred me to a NeuroSurgeon at Barrow Brain and Spine. I met with the neurosurgeon about a month later, where we decided that the best course of action was to watch and wait. The lesion on my cerebellum had previously bled, but I did not have any symptoms outside of migraines. I would have a follow up MRI in six months, then eventually it moved out to annually.

    In August 2020, I had an MRI that showed my angioma was plumping up. My neurosurgeon was concerned that it was preparing to bleed again. Because the angioma was so close to my spinal cord, my neurosurgeon felt that it was time to start talking about surgery to resect the angioma before it bled. Because of the Covid pandemic, I was not able to have surgery until February 2021. The surgery was a success! The entire angioma was resected. However, it was very friable and ended up bleeding during surgery.

    Recovery consisted of vestibular physical therapy and lots of rest. I was most scared that somehow my personality would be removed during the surgery. I was not aware that HOD was a possibility for me. Two months after surgery,I was finishing up physical therapy but I wasn’t getting any better. In fact, I seem to be getting worse. When you have surgery in the back of your brain or on your brain stem, it severely affects your balance. I was dizzy all the time ( like I had just gotten off of a merry-go-round) and I started to have a lot of eye pain in my right eye only. I called my neurosurgeon and he asked me to see my ophthalmologist to look at my eyes. When I went to the ophthalmologist, I told her that it felt like my eyes were swimming through gel and I couldn’t see what I wanted to see. The images were coming in very slowly, and it looked like everything was jumping up and down. The eye doctor found that my eyes were very healthy, my optic nerve was perfect, but that my eyes were off vertically by 3°, and that I had developed radial nystagmus in my left eye. I had some pretty severe double vision, but my brain was working very hard to meld the image together, so I didn’t notice the double vision too much.

    Once the ophthalmologist determined that this was not an eye issue, my neurosurgeon sent me for a new MRI. And this MRI, they found a new lesion that look like a demyelinating lesion, and it was thought that I might have multiple sclerosis. I sent all of my records up to the Mayo Clinic in Scottsdale, and asked them to review my case. They accepted me, and I was assigned to a neurologist who specializes in multiple sclerosis. He ran several tests including a test that checked for auto immune diseases in my blood. I was also sent for a spinal tap. All the test came back clear, there was no MS. It was then that Mayo’s radiologist reviewed all of my prior MRI’s and determined that the lesion was actually Hypertrophic Olivary Degeneration. Both mayo clinic and Barrow Brain And Spine told me that very little is known about HOD, and that the lesion would likely resolve on its own.

    I immediately found the Hypertrophic Olivary Degeneration support group on Facebook, and asked them what I should expect. To my surprise, the lesions do not resolve on their own. In fact, this is a forever diagnosis. The only information we have as patients comes from each other. One of the leading symptoms of HOD is fatigue, so it’s very difficult for us as patients to fight for our health and answers. The Hypertrophic Olivary Degeneration Association gives me hope that the newly diagnosed won’t have the same struggle in the future that we have now.

    I have since been able to return to my career and accounting/finance. I was concerned at the onset of HOD that I would not be ab


    Hello from Starbucks!

    Hi everyone, I am at a Starbucks near my house. I just joined The Mighty because I have a friend with EDS and she linked a story from here. Anyway, I was surprised severe myopia or even Low Vision was not one of the categories to choose from when setting up your profile. Anyway, I'm glad there's a group for us. I am corrected to about 20/80 and have nystagmus. I have some retina issue and eye randomness that I was born with. I can't see well enough to drive.

    Quick question, does anyone else have issues going to places like Target or any big box store to get glasses? My prescription is -15 and -17 and the person wasn't able to put my prescription into the computer. She'll get her manager to see if there's a certain "YES THIS IS A REAL PRESCRIPTION" button to push on the computer to enter my prescription and finish my order, and they will call me Monday to confirm. But man, I definitely felt like the oddball who is not 'normal' enough to do normal things like drive and get eyeglasses at a regular place, but my eyes are not so severe that I require a cane or anything like that.

    #Blindness #LowVision #myopia

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    It helps to have a bit of color to brighten your mood. Advice Please! Depressed & chronically https://ill.Need someone to come into my home.

    At one time I had National Counseling Group come into my home. I live on the couch. Contact with world is my phone. I'm 57 Grandma of 7.All my family lives out of town. I use be outgoing and energetic, now I'm homebound the most I get done is a load of laundry once a week maybe some dishes. I have no company other than a friend who acts as an aide. He works nights and basically doesn't do anything to really motivate me. I had a group called The national counseling Group last year they came for 10 hrs a week. 1 kind lady .Helped mentally alot. Like many of you I'm very isolated. I have adrenal insufficiency which I take steroids for so I can end up very sick very fast which normally keeps me very lethargic and fatigued. I feel like I am a shell of myself. It's very depressing in itself. I don't get dressed. I bathe once a week otherwise I wash up downstairs. I try reading inspirational short devotionals in the morning and I pray. My family is too busy with their lives to have much to do with mine. I see my doctor next week and I want it to ask him about palliative care to get help to live more fully with my chronic conditions. I have recently undergone a lot of tests find out that I have sinusitis tachycardia heart issues mild, I have tried antidepressants in the past they have helped at times but I also have had many side effects some permanent .Have a very difficult time adding medications to my list because of my liver and my other health issues so unless it's natural I try to avoid it. I eat fairly clean as I'm a vegetarian. Basically I feel like I'm dying inside. I know I need help I ask God for help and I'm waiting. Any suggestions even if they sound crazy please I'm very desperate. P. S. I don't want to kill myself. It's gonna happen naturally if nothing changes. I am lonely and need a friend. I do have counseling Mondays video chat. Trying to get my aide paid. So he can help me. Maybe I can teach him to help me rather then just do things for me. Thank you My Mighty Family.❤️

    These are some things. They don't define who I am. I have Overcome much in my life. I will fight to get help. I just don't want to feel or be alone anymore . 🥀♥️P. S. I am going to start a painting. XO

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    Cuddles my best friend

    By request I am sharing a pic of my best girl friend Cuddles.Resued her 3 years ago.My emotional support . I'm in love. Please share a pic. of your support pet or stuffed animal.
    #Depression #RareDisease #sjogrens #Anxiety #Fibromyalgia # IBS #ChronicFatigue #Vertigo #SpinalStenosis #UnknownDiagnosis #InspirationalQuotes #Crafting #Nystagmus


    Being alone with Nystagmus #

    So I was born in 1970 with Nystagmus. My parents were told oh it's only cosmetic and will not affect her vision ...really??? So I did not have any accommodations in school until I went to college in the late 90s. That is a long time to struggle. Where I live noone knows anything about Nystagmus even the eye drs know almost nothing. I do not know another human being with Nystagmus. I hate to meet new people or drs. I always can tell when a new person first notices my condition because it's like they latch onto my eyes when we are talking and they are really distracted. That has led me to constantly look at the ground around other people. I have social anxiety really bad. I am exhausted because I have spent almost 50 years trying to keep up with people without low vision not knowing I had low vision without anything to compensate for the challenges of everyday visual challenges so I am really excited to find other people with this condition and to hear what helps you manage in such a visual world.


    Disappointed again

    So I have this vacationed planned with my one best friend starting this Saturday. We’ve planned it 4 months now . We are driving my daughter from the Bay Area to Oregon for horse camp and then making a road trip just us two. I have an eye condition called Nystagmus in only one eye and driving, especially long distance is very hard because my eye moved involuntarily. I don’t have control of it. It’s a small movement but enough to cause depth perception problems and double vision and dizziness. Well, my friend just bailed on me! I understand she has a lot of problems right now , to long to go into, but I was going to pay for this trip and now I have to figure out how to get my daughter there. I can try to drive but my anxiety will be through the roof! This camp cost $1,200 and she’s so excited and it’s been planned for months. I’m so fed up with people and being disappointed all the time. No one cares about me. No one understands my eye condition because they can’t see it, just like they can’t see and don’t understand depression . This world sucks!!! And now I’m even more alone !! Feeling so depressed and having hard time functioning because I need to figure this out . I may just drive but it will be so so so hard 😢😢


    Thread of Depression

    livingwithss logo

    Have you ever wondered which Superficial Siderosis symptom is the most commonly shared and often the most incapacitating? Sensorineural #HearingLoss, #Ataxia, and Myelopathy are all horrible. Statistically, 50% of SS patients will have to cope with at least one of the big three if not more. It may surprise you to the most common clinical symptom Superficial Siderosis patients suffer from is #Depression. Not everyone falls head first into a pit of despair, but the battle for your health wears down even the most optimistic person.

    As your #Disability progresses stressors take over; slowly your quality of life begins to change. Conversations become impossible to follow and going to work a nightmare. Diplopia or #Nystagmus robs you of your ability to drive. The bonus, if you live in a rural area without access to public transportation, say goodbye to your job and your independence. If you’re one of the lucky few to develop anosmia enjoying your favorite foods is now a memory.

    Stress And Depression

    Chronic stress can naturally evolve into Depression, but there is also evidence of a biological connection. Screening Superficial Siderosis patients for Depression needs to be a regular part of their plan of care. Loss of concentration, sleep disturbance, cognitive and behavior changes can be the cause of and caused by Depression. Increased physical pain and fatigue can be real consequences in a depressive state. Friends or family often believe feeling sad is run-of-the-mill, so it’s easy to miss the distress.

    When Robin Willams took his life, he was not aware he had Diffuse #LewyBodyDementia. His widow wrote an essay in 2016 for a neurological journal titled “The terrorist inside my husband’s brain.” She describes his struggle in vivid detail; he was “growing weary.” That is a perfect description for all of us who are touched by superficial siderosis.

    The last few years have been very hard on Gary. He had to give up his job. They made him stop driving. A sister lost her battle with #Cancer. Stress and #Anxiety. His physical deterioration continued body pain, constant headaches, and hearing. But the most significant noticeable change was his short-term memory. I could feel the Depression taking hold. It continued to worry me for months. We were sitting in the kitchen just before Christmas when the conversation turned to Robin Williams. Gary said, in a moment of honesty, he understood what drove Robin to commit #Suicide.

    Taking Control

    Gary entered the VA healthcare system this past January. I brought up our conversation from December in his new patient interview. Depression and suicide are two big trigger words with the VA. Gary explained he merely meant he understood what would drive someone to take their life. I was given instructions for emergency intervention if it ever became necessary.

    This October we traveled to Little Rock for an updated neuropsychological exam. His first test was in 2014. The results were consistent with his previous testing. No signs of #Dementia but there was still mild cognitive decline with short-term memory loss. Clinical was a significant contributing factor regarding memory problems. Dr. Fazio suggested starting a treatment plan, but Gary has chosen to decline therapy at this time. We returned home with the understanding of the importance of annual screenings and caregiver intervention.


    Still Here and Mighty Resilient


    By Mystery Lady

    In 2005, my life changed in one day.

    A mystery illness entered my life and had me bedridden overnight where I remained for the first two years of my journey. Immobilized by unrelenting pain, my fatigue was debilitating to the point that I could no longer will my body to move. I felt closer to death than to life. On most mornings, as I woke up from a night of broken sleep, my first thought was often astonishment at the realization that I was still alive. On some days, I could eventually muster enough energy to get out of bed and have breakfast after which I would “kiss the couch” for the next 12 hours, getting up only to feed the cats or visit the bathroom. Anything else was out of reach. I did not have the energy to read or watch television or talk. All I could do was lie there, and survive.

    Unbeknownst to me at the time, there would not be any significant improvement over the next decade and a half. Doctors were baffled by my medical dilemma and many called me “mystery lady”. No one could explain how a 47-year old woman had gone from leading a full life of working, traveling, socializing and volunteering to a complete inability to produce energy for such mundane activities as brushing my teeth, going up a flight of stairs in my home or taking a shower. During the first few years of my illness, I collected diagnoses of exclusion including #InterstitialCystitis, irritable bowel syndrome, post-viral chronic fatigue, mitochondrial dysfunction, food intolerances and #SinusTachycardia. Yet, no cause or treatment was offered and specialists adopted a “wait and see” approach year after year. My life was passing me by…

    Twelve years after that fateful day when my body broke down, I was assigned a new family physician who turned out to be both a blessing and a turning point. She meticulously studied my case and listened to me with intent as I told her about my journey into #ChronicPain and illness. She did not doubt the severity of my pain being expressed through dozens of symptoms plaguing me from head to toe. Dr. O. was clear from the start that she and I were to form a therapeutic alliance built on trust and truth. Under her medical leadership, specialists ordered tests and offered medical hypotheses to help figure out the puzzling mystery. Tests were done for #Hyperthyroidism, pheochromocytoma, carcinoid tumour, mast cell activation disease, porphyria, #Vasculitis, acromegaly and #AdrenalInsufficiency. All turned out to be negative. And yet, my pain persisted as did a myriad of symptoms ranging from episodes of sudden elevation in blood pressure and tachycardia to complete intolerance to heat, an inability to concentrate, unusual sweating, flushing and edema of my face, hands and feet, burning skin, migraines and shock-like pain in my legs, anosmia, and most of all, incapacitating left-sided abdominal pain. For the last 14 years, I’ve been trying my best to manage 30-odd symptoms. Pain does not take a vacation…

    As of 2019, some of my symptoms have been given a “home” (diagnosis). After two years of ongoing testing and follow-ups from March 2017 to May 2019, most arrows are pointing in a clearer direction: neurology, auto-immunology, rheumatology and oncology. Recent diagnoses now include #Nystagmus (a vision condition in which the eyes make repetitive, uncontrolled movements), #Erythromelalgia (intermittent episodes of severe, burning pain), #Rosacea (chronic inflammatory skin condition) and #Osteoarthritis (wearing down of cartilage). Other investigations still in process include myalgic encephalomyelitis (ME), small intestinal bacterial overgrowth (SIBO), #Fibromyalgia, central sensitization pain syndrome, #Dysautonomia and a neuro-endocrine secreting tumor. It’s quite the load.

    As I enter my 61st year of life, my journey to wellness is far from over, yet I take comfort in the fact that I am still here, still resilient and still committed to finding solutions, treatment and stability in my symptoms. I wish to share some encouragement and personal insights on resilience with all of you who are experiencing chronic pain and #ChronicIllness.

    • How do we maintain a sense of hope when the medical community doesn’t have answers, and thus, cannot formulate a treatment plan for us?

    • Where do we find solutions when our illnesses are rare and research on orphan diseases is scarce?

    • How do we get back up after collapsing emotionally, physically and spiritually on a daily, if not hourly basis?

    • How do we maintain a love of life while our health is in turmoil and we have lost all sense of normality?


    On my worst days, I would commit to making it through the next five next minutes without allowing my brain to worry about how long my suffering would last “this time” or even if it would ever stop. Although I was in a constant level of daily pain and fatigue, flares would drive it up to the point of being unmanageable and I often wound up at the emergency department. I’ve had 24/7 flares lasting up to three months at a time, sometimes longer. By focusing only on the few minutes ahead of me, I could survive and maintain my resilience minute by minute. Living five minutes at a time has been a saving grace.


    When I had a particularly difficult day and felt the darkness of despair shadowing me, I would ask my husband for a pep talk to get me through. He would sit by me, hold my hand (without stroking it as even the slightest touch created even more fatigue or pain), and would pronounce four key words that got me through many, many difficult moments. He would use his most compassionate voice and say to me, looking straight into my eyes: “This too shall pass”. Every single time he did that, he empowered my resilience and helped me find calmness in the midst of adversity.


    You know how a bookmark allows you to find your place in a beloved novel and if you misplace your bookmark, you lose your place in the story and you find it a little frustrating? Illness is like the lost bookmark in the sense that it takes away your “place” in life, and that is more than a little frustrating! The life I used to have and enjoy is no longer a possibility (at least, not in this moment) and I understandably grieve such an immense loss. Yet, if I only see the “big picture” of that life-altering loss, I tend to panic and struggle because the grieving process is requiring more energy than I can produce. To maintain my resilience and uphold hope, I break down my losses in little pieces and grieve the lost bits and parts of my life in manageable increments. I allow myself as much breathing room as I need in between my grieving moments.


    When I compare my life today to the life I had before chronic illness, I feel my resilience go dark and I lose my way on the journey. It takes a fair amount of courage to accept a new normal and I resisted it for a long time thinking that if I accepted it, I was allowing illness to settle in. Acceptance is not surrender; it is simply accepting what is in this moment. No more, no less. The trick for me is to keep remembering that there may come a time when science and medicine will have a better understanding or a treatment for what ails me. I could get better. My health could improve. There could be a doctor out there who will figure out how these symptoms fit together and how to help me recover, rebuild, restore. Resisting comparison and maintaining hope in a small corner of my mind shines a light on my resilience.


    Chronic pain and chronic symptoms tend to play the same tune over and over again in our mind and body. A never-ending cascade of sour notes and disharmony! We know all too well the words to the song and each note scratches our heart like fingernails on a blackboard. My most fragile self tends to show up at bedtime when my home is filled with stillness. It is then that my mind starts to work in overdrive and weakens my resilience. In those moments, I choose wise words to quiet down my worries. I borrow from the Emotional Freedom Technique whereby a certain phrase is used while tapping on specific acupressure points. Although I don’t do the actual tapping exercise while I’m in bed, I adapt the EFT phrase to my reality of the day and repeat it in my mind to block out negative thoughts that interfere with falling asleep. For example, on a day when I feel overwhelmed by fear, I might repeat a phrase similar to this one: Although I have insecurities about my future, I deeply and completely know that I am in the safest place I can be right this moment.

    I hope that what I have shared with you will resonate on some level and be helpful on your journey. How do you remain resilient? What tools do you use to help you stay in the light? What inner resources do you tap into to make it through each day? I would love to hear from you if you wish to share tips and advice on staying resilient. I look forward to learning from you.