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I'm having multiple odd episodes that are keeping me undiagnosed. Help
Brain & Nervous System | Last Active: Oct 19, 2023 | Replies (203)Comment receiving replies
@coralbells1 Thank you. I'm glad to hear you have found a doctor that was able to solve your issues. That's great. I've visited several internists, and all of them were at a loss. There's only so much testing they can do, and if they don't find anything, they don't have a next move. Sadly. Thank you for the prayers. Thank you.
Replies to "@coralbells1 Thank you. I'm glad to hear you have found a doctor that was able to..."
@johnwes5819 - I send your description of episodes to a friend who has a great deal of experience in seeking and obtaining diagnoses for her own "odd" symptoms. This is her response: A couple of thoughts to pursue.
Dysautonomia - http://www.dysautonomiainternational.org/page.php?ID=34 this may explain some of the symptoms, but it's hard to diagnose.
An endocrinologist can test for Adrenal Insufficiency. The best test for that is a Cortisol treat that must be done about 8 am.
A gastroenterologist can test for Exocrine Pancreatic Insufficiency (EPI). That would explain the gastric pains, light stools and would cause low vitamin levels that would then lead to some of the other symptoms.
These are just some possibilities, given the symptoms. I hope this helps.
Dysautonomia International:
What is dysautonomia? Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the automatic functions of the body that we do not consciously think about, such as heart rate,...
dysautonomiainternational.org
@johnwes5819 Same here, my internist was at a loss as to what I had, it took a neurologist to suggest it was my liver. I chose an internist as my PCP because I was told by friends, some of whom are doctors, that they are better diagnosticians than family practice doctors. They probably are, but mine sure missed what my problem was.
JK
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About 11 years ago I went to NIH looking for answers. I went down with a dx of Stiffman Syndrome. I got laughed at and yelled at for wasting their time. A couple of months ago I went for EMG studies and had contractions. I asked the doc if he knew what it was. Yes,it's Stiff Person Syndrome! In early 2000 I went to Boston, Greenwich, CT, and NYC. I received three separate dx. Autonomic dysfunction, orthostatic hypotension, and small fiber neuropathy. No one put together until 2012 when a pain management doc said that I had CRPS. Medicine is imperfect and I know I have a very unique body. Just with StiffPerson Syndrome I am one in a million! I don't do well with medications. Between allergies and bad side effects, I try to stay away from as much as possible. I do better with hands on thus osteopathic manipulative medicine works for me in many ways. My spiritual life keeps joy in my life and my nurturing skills puts my attention on my husband with dementia and my four children and five grandchildren. I feel fortunate to be able to still drive and also to do some chores from my power wheel chair, keep financial things in order, and spend time in my Christian walk praising and praying. Pain is part of my life. It doesn't rule my life but once in a while when I have had it and resort to oxycodone. Getting diagnosed is not a walk in the park but when someone finally hits the nail on the head, I have found tremendous relief, even when there is no cure.