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Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.] |
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02-03-2012, 12:04 AM | #1 | ||
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New Member
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I've just been diagnosed with a rare autoimmune disorder called hashimotos encephalopathy. It means the thyroid antibodies a0lso attack the brain. Started immunosuppressant ssteroid, prednisone tappered down. Next is plasmapheresis. Does anyone have knowledge of my diagnosis or of plasmapheresis?
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02-03-2012, 12:22 AM | #2 | |||
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Wisest Elder Ever
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Some of the posters at the myasthenia gravis forum get plasmapheresis...
You might post there for answers to this procedure. http://neurotalk.psychcentral.com/forum77.html Type the term into the search engine on the first page there in the upper right, and all posts will show where you can look around. It is always useful to search, because the board here has been around for years now, and some posters move on. Their posts however may still be useful to you.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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04-23-2012, 10:03 PM | #3 | ||
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New Member
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I am trying to find a doctor with knowledge of this disease.
Could you, please give me the name and a contact number of the doctor? |
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04-25-2012, 09:30 PM | #4 | ||
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Diagnosed Aug 2010. Receiving treatment at Houston Medical Center.
8-9 years of sluething to determine. Receiving corticosteroid infusion treatment once a month. It has been very effective for me. Tried oral corticosteroids, without success. Can discuss physician via private email. |
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07-18-2012, 08:44 PM | #5 | ||
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New Member
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It has been years of suffering for me as well. Fari PS, The site does not allow me to send my email to you. See if you can get the name to me. God bless Fari |
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12-19-2012, 11:06 PM | #6 | ||
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New Member
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Hello,
Saw your post (forwarded below) offering to provide he name of the doctor treating your HE. My mother has elevated anti tpo antibodies and neuro-cognitive symptoms consistent with HE. Doctor is attempting to treat it, but would like to consult with another doctor who is more experienced with HE. Would you provide me the name and contact info for your doctor so we may see if he is willing to consult via phone or email with our doctor to answer a few questions? Would be deeply appreciated. Also, when you say you tried oral corticosteroids without success, which one were you on specifically? What dosage and for how long. Did you have *any* response at all to the oral, or none at all? Asking because my mom initially appeared to improve in the first week on 80 mg oral prednisone, then she backtracked to where she was before even though dosage was not lowered and we've had not further improvement (its now the 3rd week). Did you experience something like that, or just no sign of improvement at all on the oral steroids? Thanks so much for reading this and hoping for your reply. Can email me privately ** Thanks, Linda Quote:
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10-15-2015, 02:45 AM | #7 | ||
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Newly Joined
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Has anyone recovered or seen any one having recovered from this Hashimotos Encephalopathy? Please send a private email to me. thanks.
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11-18-2015, 12:47 PM | #8 | ||
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Junior Member
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Can you please tell me what led to your diagnosis? I have antithyroglobulin antibodies (but low) and have been experiencing very bizarre psychiatric symptoms and high anxiety/panic. All other levels in range although on the low side for TSH. They tested me for all the other paraneoplastic conditions that can cause this. I heard that it doesn't matter what your titer is. Just wondering how it came about for you. I wish you well.
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11-19-2015, 03:26 PM | #9 | |||
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Grand Magnate
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The information in this link (and links therein) might help people who live with Hashimoto's Encephalopathy; http://www.thyroid-info.com/hashimot...phalopathy.htm .
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12-10-2016, 01:03 AM | #10 | ||
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Hi. First time on. Hoping I can connect with someone with answers. Was dx'd with Hashimotos approx 9 years ago in ER when I developed chest pain. Levels were completely off. At the the time they thought I had lupus also but did not have all the markers. Went on synthroid. Life went one. I slowly got worse. As of this date I have been hospitalized for a TIA. During workup found to have nodule on thyroid. Having difficulty with memory, walking, parasthesia, swelling face, eyes, difficulty opening left eye. Was worked up in hospital and am now being seen at MS clinic. Scarey. But probably best thing that happened. Had testing done. Alll my labs are way off. Sed rate way too high, WBC low, spinal did show one banding only. I have just finished 5 days of solumedrol IV treatments. Some slight side effects but I'm hopeful. However prior to starting neurologist called to tell me she made an emergency endocrinology appt for me next week as my. Thyroid pyroxidase numbers way to high. I'm am currently on 220mc synthroid. Sorry. I know this is wording. A bit overwhelmed
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