autoimmune autonomic neuropathy

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    Community Voices

    Twice in the last month, I lost the ability to walk for an entire day because my whole body would start shaking so hard that I couldn’t maintain balance, even with a walker. One time it was after a short amount of exercise which I hadn’t done in a long time and I almost fainted when I stood up and then I lost function. The second time, I had a hemiplegic migraine and took medication for it that I’ve used for a few years and never had any issues with and I had the same shaking standing and attempting to walk was a problem. I regained a little bit of function by bedtime but not much. The next morning, I was ok again. Is this a symptom of POTS? I have been diagnosed with it. Has anyone had this type of experience? #POTS #AutoimmuneAutonomicGanglionopathy #AutoimmuneAutonomicNeuropathy #MyastheniaGravis #ChronicIllness #Dysautonomia #AutonomicDysfunction

    7 people are talking about this
    Community Voices

    Learning to accept my SFPN this disability pride month

    I’m a long time follower of The Mighty, new(ish) contributor. I’ve been challenging myself to start feeling comfortable speaking publicly about the stigma and isolation of SFPN, and wanted to share one of my first advocacy articles. Would love any feedback others may have
    #AutoimmuneAutonomicNeuropathy #sfpn #ChronicPain #HealthEquity

    Community Voices

    Can’t ACCESS treatment!

    The only available treatment for my 16 year long battle with a secondary autoimmune neuropathy is unfortunately inaccessible to me due to:

    - insurance not willing add it to its coverage guidelines yet

    - out of pocket cost being $9.7k/infusion.

    According to my doctor, I need these infusions for at least 12 months to start.

    This is what medical exclusivity looks like.

    I live every day with neuropathy burning me from the inside out, which is quite literally hell and I cannot access treatment.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #treatment #Disability #Accessibility #access

    38 people are talking about this
    Community Voices

    Internal Hell: Burning from the inside out. A story to remind you to never give up and never give in until you get answers.

    It’s been hell, literally, inside my body as I’ve been burning from the inside out for just over half my life now.

    For nearly 16 years I was brushed off as a liar, a psychosomatic case, an anxious or depressed individual, that I’m too young and must be making up my symptoms.

    What could amyome possibly have to gain by faking their illness?

    To me, I lost everything! I had to change my career right after I graduated. I had been bedridden for 8 out of 15 years. I had a small child and was a single parent who didn’t have family to help.

    I’d seen over 100 doctors in the last decade alone. Most of them say, “you’re a young woman of child bearing age, it’s obviously just anxiety.”

    We’ve gone through the diagnostic odyssey of Lyme (equivocal), EBV (reactivated) which took 5 years of my life, genetic testing, doctors did all the same ANA and CMP and thyroid tests over, and over, and over again and they were almost always within normal limits.

    I’ve been told I just needed to excersize more despite my intolerance to it due to POTS, frequent falls and constant dizziness with syncope. My heart rate jumps 100 points on almost a daily basis.

    I’ve been told it’s all in my head by Mayo Clinic who refused a formal written request for further testing, even after they diagnosed me with Ehlers Danlos Syndrome and confirmed Medullary Sponge Kidney Disease.

    I found out that due to this autonomic dysfunction, I have a second degree heart block which has been symptomatic at rest and when standing. My heart randomly decides to reset which is on a whole other level of scary. My heart rate gets down to the 30s and up in the 190s.

    Finally, I pushed for a different type of testing with a new neurological specialist. The golden standard of a biopsy for small fiber neuropathy.

    Then took the results to a neuromuscular specialist and said what’s causing this? They took my blood and sent in for a WASHU panel and after patiently waiting 6-8 weeks it came back positive for two antibodies.

    My TS-HDS was 80,000 and my Histone H3 was 2,100.

    TS-HDS is an autoimmune heparin antibody and depending on the person it can have very different effects and bind to the blood vessels and even parts of the autonomic nervous system. It gets activated by anything that can set off the immune system. Childhood sicknesses make me bedridden for a week without a warning or even a sniffle.

    Histone H3 is an antibody related to an ataxic gait syndrome that normally affects those ages 65+. Now I know why I have such difficulty walking. It’s so bad that I have opted for a power wheelchair that I use now because I move like a sloth and it’s painful.

    It’s given my back my mobility in a way I never thought I’d have again. But honestly; the best part is validation.

    I finally have answers and proof that this is very real and not just anxiety. Sure, I had some anxiety in not knowing what was wrong. Any person who cares about their daily functional capacity being reduced with no answers would, in my opinion.

    But this is different, this is on paper and real. I’m currently waiting for insurance approval for IVIG therapy. The neuromuscular doctor thinks it may help.

    I wanted to share my story because it’s been hell. Physically and mentally. It’s draining and exhausting when you’re already exhausted. I know it. I’ve been there. I’m still there.

    You have to be your own advocate. You can research potential conditions and request that your doctor rule them out.

    Just know, that there is hope. One day you will get answers so don’t give up, please, hang in there. They say there has to be a storm before the rainbow appears.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #Advocacy #AutonomicDysfunction #Heartblock #EhlersDanlosSyndrome

    18 people are talking about this
    Community Voices

    And now for this week’s Unique Bed!

    <p>And now for this week’s Unique Bed!</p>
    2 people are talking about this
    Community Voices

    How to deal with variability

    I'm finding one of the most challenging things with my many diagnoses is how variable it is from day-to-day, or even hour to hour. If I only had bad days, I think it'd be easier for me to cope with what I am and I'm not able to do. But, since some days are better than others, it's hard for me to adjust my expectations. It's also hard for me to not push myself beyond my limits on my good days, I want to do a better job of respecting the good days instead of trying to do all the things and then regretting it for the next two weeks.

    How do you deal with variability in your condition?
    #EhlersDanlosSyndrome #AutoimmuneAutonomicNeuropathy #Dysautonomia #Disability

    4 people are talking about this
    Community Voices

    Struggling tonight

    Having one of “those” nights... My sister, niece and I are taking a little mini vacation tomorrow - Sunday (No worries, we aren’t going anywhere around crowds or to any “hotbed” states” but we still have our masks & loads of sanitizer packed) so I have had an abnormally extra busy past few days trying to prepare. My body is so sore and hates me right now. I was hoping for a good night’s rest, but due to being so uncomfortable I took a dose of pain meds which makes me insanely itchy despite pre-medicating with Benadryl, Zyrtec, Pepcid, Tylenol, & Phenergan. I was able to fall asleep for about 3 hours but woke myself up scratching, now I can’t sleep. I’m also anxious about the trip for several reasons but mainly right now because we typically fly when we travel because it’s faster and easier on me all around. However, this trip we are driving and it’s about a 5 hour trip without stopping. I am so scared it is going to put my body in turmoil to be in the van that long. We are planning to make frequent stops, I have extra pillows, blankets, hot/cold packs, compression socks, literally everything I can think of to keep comfortable but I can’t help but be nervous. It’s been years since I have traveled more than 1 to 2 hours anywhere. I just want to be able to enjoy myself once we get there.
    #AutonomicNeuropathy #AutonomicDysfunction #Gastroparesis #MultipleSclerosis #TPN #Portacath #PowerPort #ivfluids #SmallFiberNeuropathy #AutoimmuneAutonomicNeuropathy #OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #Malabsorption

    3 people are talking about this
    Cyndie Randall

    What My Daughter Helped Teach Me About Living With Chronic Illness

    I am living with autoimmune autonomic neuropathy and postural orthostatic tachycardia syndrome (POTS). This has colored my life in dark and devastating ways; the emotional weight of it often leaves me trudging through the mud of depression and anxiety. And I’ve slowly awakened to the truth that this illness story is not the only story my life tells. When you’re chronically sick, you know this discovery is a brave and profound one — we can settle into believing our condition is who we are, that our life purpose and our capacity to offer goodness to others is also broken and ill. The following story, through the living and the telling of it, invites me to remember who I really am and that I can choose life, even in the midst of suffering. *** I was washing the butter off the pan that grilled our cheese sandwiches. Early afternoon was here already, and when I looked downward at the soap water and caught view of my pajamas, I remembered my exhaustion from a night of poor sleep. Guilty thoughts about the day being half-wasted had tried to creep in, but they were pressed thin by my 8-year-old daughter Maryn’s roaring laughter over the way my pinky finger lifts whenever I eat handheld food. We had squeezed a grapefruit’s juice into our spoons over the course of the meal. It satisfied both of us, and also ushered in visceral memories of my father feeding me the bitter fruit, piece by piece. I stood at the sink thinking on these things and felt Maryn’s soft presence behind me asking for a hug. She always snuggles in so sweet. “I have a headache,” she said. “Oohhh. I’m sorry. Have you tried drinking some water?” “I will. I’m sure that’ll help. I think I’m gonna lay down.” “OK. I’m glad you take such good care of your body.” I hoped to myself that I had taught her this in some way. I also felt the gritty stirring on my own internal battlefield, reminding me how hard and holy an act of self-love can be. I suggested she camp out in her bed with some books. She disappeared for a moment. I was wringing the water out when she reemerged and moved toward me with another idea. “Maybe we should lay down in your bed and read and then take a power nap.” I tossed the rag toward the sink’s edge and felt a loving surrender happen in me. Yes. Maybe we could both take care of our bodies today and be together while we do it. Maryn searched her shelves and chose three books to carry in along with her princess water cup; I grabbed a half-read Maya Angelou. We settled down underneath my mismatched bedding and there was an unspoken between us about how perfect this was feeling. I took a deep breath to absorb all of what it was and turned my head to find her precious face. “Maryn, do you know how much goodness is in this room right now?” I lifted my chin and smiled and closed my heavy eyes. “What do you see that is goodness?” I asked. “What do you hear? Or maybe you feel it.” “Well, I hear Jack bouncing the basketball and having fun outside. And I hear the birds chirping.” It was my turn. “I feel the breeze on my skin,” I said. “It’s subtle but it’s fresh.” Then we realized together that the window behind Maryn’s head wasn’t open like the one behind mine; she couldn’t feel the coolness like I could. She twisted and reached up and up and found the push too difficult. “Let me help you.” I got it with one strong pull. She buried her head back into the pillow, made a long stroke down the dog’s back and continued on. “And I love the smell of Happy’s awesome breath.” She smiled big toward me and waited frozen for my response, completely pleased by her own sarcastic wit. I knew it could appear from an outside view that little was happening just then, yet not a bit of wasted day was being felt in any of the little. We settled inside the covers of our chosen books and into each other too. We connected without words and took a small few minutes to notice the life around us and nurture it within us, between us. I don’t know how long we had been there when Maryn leaned in and broke the silence. “There are no pictures in this book,” she whispered. “I’ll have to use my imagination.” Cyndie and Maryn *** I hold that day, sickness and all, with so much gratitude. What beauty and connection would we have missed out on had I chosen to mute or withhold my presence simply because of its imperfection? These precious moments, though never painless, remind me why I want to live — not survive, but live — even if I must do it from this battered body. I’m still needed, still wanted, still a carrier of life. I can still give and receive love, however imperfectly or unconventionally it may unfold at times. In light of my chronic health problems, here is one of the most glorious truths I’ve discovered: I am sick, but I am not my illness; I am so much more than a body. So are you, friend. And when our bodies betray us, we still have a profound question to answer — the same one posed to the healthy person: What will I do with the life and love opportunities around me and within me today? We can either disqualify ourselves from them or we can choose to be present for them in the ways we are able. You are still needed, still wanted, still a carrier of life — a giver and receiver of love. Where and how will you choose to notice and nourish that, and to whom will you tell your new story? Your body may be broken, but your heart — your heart is still very much alive! Please allow the world to experience it. Follow this journey on Cyndie Randall. The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.