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I'm having multiple odd episodes that are keeping me undiagnosed. Help
Hello,
I posted before in another group in its entirety but I think it's too broad and there could be a multitude of theories and explanations. So I'm going to break my story down into my most bothersome episodic symptoms. To start, everything on the surface looks like panic disorder or anxiety. However, my different episodes seem to be helping each other keep me feeling frantic more days than not so on the surface it looks like anxiety. I've had lots of lab work testing including thyroid, Lyme, sleep apnea home test, brain MRI, spine MRI, abdominal ct scan, and way too many doctor visits with no answer, but they do agree on one thing. The symptoms are weird and seem to be more than just anxiety. There are little bits here and there but unfortunately not enough to go on.
Keep in mind these episodes aren't all going on at the same time but they're not giving me any recovery time and feel like i'm sinking further down the hole. It's like fighting 5 bullies one at a time and losing. Just as you feel like you can get up another bully hops in.
Episode 1: After waking up with head pressure, teeth chattering, shivering, lower back pain, and sweating. Oral temperature is ALWAYS between 93.8 F and 94.8 during these episodes. Also, every day is constant cold hands and feet that never happened until all of these episodes started.
Episode 2: Brain fog, head pressure that feels like you're being pushed down when standing (like when you've had one too many drinks), usually later in the day when that feeling wears off, I'll have adrenaline body tingling, uncontrollable thoughts of self-harm and head chatter. (Not dwelling on things or worried about things, it's just the mind doing what it does and I have no control.) Also, my eye will twitch like crazy before and during these.
Episode 3: When standing for a long period of time, like cooking or washing dishes, and sweating starts to happen my heart rate increases and get extremely dizzy and feels like I'm being physically pulled down.
Episode 4: An overly excited feeling, almost like needing to yell or run to get adrenaline out, Heart rate is low.
Episode 5. Sharp colon pain, yellow stools (frequently), stools that look sickly or unhealthy, and constipation more often than not. I had a colonoscopy recently and I was told everything looks good.
I've tried SSRI's and benzodiazepines and they don't stop these episodes from occurring. I've tried strict diets and those don't help.
If you have any thought about even one of these episodes please don't be shy to comment. Thank you so much for taking the time to read.
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I guess the answer is yes and no. I take a good probiotic but the reason is because I take a lot of antibiotics. I’ve been on daily antibiotics for almost 3 years.
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1 ReactionI believe you need to go to an internist who is “trained to treat simple and complex problems...coordinating patient care with other specialists as difficult medical problems arise. I got this definition from PIEDMONTHEALTHCARE.COM. Hopefully there should be a choice of several internists close by. They are pretty common. My internist was awesome and solved a lot of complex issues for me. Also I have put you on my prayer lis.t! Hope this helps.
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3 Reactions@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.
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3 ReactionsAbout 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.
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4 ReactionsGod bless you! You are an example to us all. Keep as well as possible!
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1 Reaction@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
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4 ReactionsYes.. i've suggested and posted about dysautonomia repeatedly over the course of many weeks re @johnwes5819 's problems.. Dysautonomia, however, describes an imbalance between the sympathetic and parasympathetic nervous system and not the cause of that imbalance - in many cases the cause is never determined but other disorders can be the basis of it.
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3 ReactionsYou are a true inspiration!
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3 Reactions@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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3 Reactions@afrobin I agree that we need to research everything, and be our own advocate, but I do think most doctors do want to see your health improve. If your doctor does not, you should find a better doctor.
I have a couple of issues about my PCP but I really do believe he cares about my health. I know when I was diagnosed with non-alcoholic cirrhosis he went the extra mile and researched to suggest where he thought the best place to go for treatment would be. I think most of my doctors are caring people.
JK
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