Hypoparathyroidism

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Hypoparathyroidism
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    I’m new here!

    Hi, my name is kittyyyykatt. I’m new to The Mighty and look forward to sharing my story.
    let’s go people!
    #MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #Hypoparathyroidism #HypermobilitySyndrome #JointHypermobilitySyndrome #ehlers-DanlosSyndrome

    5 comments
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    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".

    #Hypoparathyroidism

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    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".

    #Hypoparathyroidism

    Post

    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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    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.

    2 comments