Hypoparathyroidism

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Hypoparathyroidism
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    Community Voices
    Community Voices

    Is there anyone out there? I'm struggling with this condition and no one thinks it's serious. I need to hear from people who "get it".

    Community Voices

    Is there anyone out there? I'm struggling with this condition and no one thinks it's serious. I need to hear from people who "get it".

    Community Voices
    Community Voices

    Undiagnosed Autonomic Problems

    Hi. I had an attack of Transverse Myelitis fourteen years ago in 2007. Thankfully, I have had a great deal of recovery with only slight disability remaining. A year and a half ago I had a meal at a restaurant with a friend. About half an hour later I passed out. My blood pressure went extremely low. I was taken to the hospital by ambulance. I was released a few days later with no diagnosis. Then, last September (2020), I had a second episode of Postprandial Syncope. I had eaten a veggie burger and some tempura green beans, so not a huge meal. I was subsequently hospitalized. A Cardiac Tilt Table Test showed abnormal autonomic function. My cardiologist said it was due to my heart having difficulty pumping blood back to my upper body due to my Transverse Myelitis lesion at T5-7. MRIs done at that time show my old TM lesion as well as two brain lesions that are enlarging, one in my right Inferior Frontal Lobe and one in my left Pons. My MRIs show a history of smallStrokes. They also show increasing white matter. These were compared to MRIs done fourteen years ago when I had my TM attack. I recently wore a Holter monitor, and it shows that my heart function is good.



    My Neurodegerative Deseases doctor told me I don't have Multiple Sclerosis. I had a genetic test for hereditary Transthyretin Retinol Amyloidosis (hATTR). Thankfully, it was negative. A week ago I had two hours of Autonomic Testing including a Neurological Tilt Table Test. I also recently had two Biopsies on one of my legs that will be analyzed with a Red Stain Test. I haven't gotten back results for either of these.



    Besides the Postprandial Syncope, and bouts of serious frequent Diarrhea, I also have an increasing problem with Myoclonus. It occurs frequently when I am ill of tired. I do not loose consciousness during these seizures. This has been going on for years, but is now getting much worse.



    Besides Transverse Myelitis, in 2007 I was diagnosed with Antiphospholipid Syndrome. In 1991 had Thyroid Cancer with Follicular Adenoma and Papillary carcinoma. I have post surgical Hypoparathyroidism from that surgery. In 1984 I had a hysterectomy due to a ruptured Uterus with Adenomyosis. About a year and a half after that, I had an Oophorectory because of rupturing blood filled growths on my ovaries. I also have well controlled Adult Onset Asthma.



    I'm listing all this old medical history because who knows, maybe it bears some relationship to my current Autonomic problems.



    My question is, does anyone have anything resembling my weird cluster of symptoms, especially the digestive problems and myoclonus? Please let me know if you do. I feel very alone in this journey and would appreciate any suggestions on what to pursue with my Neurodegerative Specialist.

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    Community Voices

    Any one out there with a child who had HypoPARAthyroidism ?

    I have a 10 years old daughter with HypoPara. This is all new for us and I would like to connect with other parents with children with HypoPara. Here in my community the endocrinologist says this is rare and not many kids have it.

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    Community Voices
    Community Voices

    To My Son, Who Helped Me Realize I Am 'Enough' – Illness and All

    Dear Louis, Today we were talking about the trip we took last month so I could be seen at Mayo Clinic. I told you how sorry I was that mommy is sick and has to go to the doctor so much, and what you said to me is something I will hold in my heart forever. You said, “It’s OK that you’re sick, I’m just glad you’re my mom.” You brought me to tears. I feel so guilty for getting sick, but hearing that helped me see that I am enough. Just as I am. Illness and all. That I am not the burden and failure I tell myself I am. That I matter and am loved. You are only 8 years old and have more understanding and empathy than most. Thank you for all of the sunshine and beauty you have brought into my life, and the lives of everyone around you. You are an amazing person, and I am so proud of you and the young man you are becoming. Life hasn’t been what I had planned for, and I know me getting sick has been hard on everyone. There’s so much I want to be able to do with you, but can’t because I don’t feel well. I have felt guilty for every precious moment I had to spend at the hospital, that I would much have rather spent at home with you and our family. I am so thankful for the special moments we are able to spend together, and the times I am able to push through and we are able to make extra special memories. At the age of 5 you told me you wanted to be a urologist so you could help sick people like mommy. I know that no matter what you decide to do that you will continue to have a positive impact on the world around you. The world needs more kind hearts, and it gives me hope when I see what loving, caring and sweet people you and your brother and sister are becoming. Since you were born eight years ago, I have had nine kidney stone operations, and two parathyroid operations – my second parathyroid operation leaving me with hypoparathyroidism. The past five years have been so scary and uncertain, but together and as a family we have been brave and will face this together. Your dad and you kiddos have taught me so much about what really matters, and unconditional love. I am so thankful you are a part of my life. I’m also thankful for your grandmas, great-grandma, and loved ones who care about us. I am so thankful for your dad for being a source of unconditional support and not giving up on me. I am thankful for your brother Ben and your sister Zoe for being such a beautiful part of our family. You guys bring so much sunshine into my life, and I am so lucky to be your mommy. You make my life so beautiful. Thank you for being you. Love always,Mom Getty Image by ARTindividual