I'm having multiple odd episodes that are keeping me undiagnosed. Help

Posted by johnwes5819 @johnwes5819, Sun, Mar 10 3:31pm

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.

@johnwes5819

@contentandwell I trust my doctor but she, to me, is a small fish in a big pond. I believe she knows things but isn't as up to speed as I would like and this is many many doctors later. I wasn't diagnosed with fatty liver, except one liver doctor saying the parenchymal liver disease found in the ultrasound "could" be fatty liver. The others said it's nothing to worry about, you're good. However, the doctor that did mention "could be fatty", has not made an effort to move forward and he made it sound like a biopsy is a waste of time and then there is bleeding potentially in the future. Not sure why but it was brushed under the rug.

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@johnwes5819 It sounds like you've got a lot going on. There was one set of symptoms that was familiar to me which raised two questions for me: what is your blood pressure and what is your hemoglobin?

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@hopeful33250

Hello @johnwes5819

I hear your frustration. It sounds as if you are doing all that you can do to advocate for yourself. Your situation is difficult because of insurance restrictions.

Have you considered obtaining a new insurance plan? I'm not sure if you mentioned your age, but if you are on Medicare you might be able to change insurances at the end of the year and get a plan that would offer you more flexibility in choosing doctors and health care systems. The new plan might be more costly, but if you manage the increased cost for one year, it might help you to get a correct diagnosis and thereby be worth the extra cost.

Also, Mayo Clinic has a symptom checker. Here is a link to Mayo's website, https://www.mayoclinic.org/. Just type in "symptom checker" in the search box and it will take you to the right place.

Also, Mayo Clinic has affiliated hospitals throughout the country. These hospitals have the ability to consult with Mayo specialists and to get another opinion on complex cases. You might call Mayo in Minnesota and find out if there are any such affiliated health care centers in your area.

Also, in order to further your research and education, Mayo offers many email newsletters. I subscribe to several. Here is a link where you can sign up for different newsletters, https://www.mayoclinic.org/medical-professionals/publications/sign-up-email-newsletters.

I'm glad that you continue to post and let me know of your progress. I look forward to hearing from you again.

Will you keep posting as you search for help?

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@hopeful33250 Yeah I'm definitely my only advocate. I'm currently not working so there's no way I could afford a better insurance plan. Sadly that's just how it is. I will definitely continue to post as things unfold. Hopefully sooner than later. It's really kicking my butt.

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@parus

Something that has likely been checked out but just in case-A UTI??

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@parus My urine has been checked numerous times. No UTI's have been found.

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@contentandwell

@johnwes5819 This is like the doctors up here, 55 miles north of Boston. They simply do not have the experience in conditions that are less common.
Since it is not fatty liver, I have no other suggestions, until you can get to a major medical center that is a teaching hospital. If you continue to work with the doctors where you are, one of them may eventually come up with a suggestion. That’s what happened to me, the neurologist I was sent to suggested that my problem was my liver, which it was! I was sent for a CT scan, the diagnosis was made, and then I went to Boston for treatment (transplant).
JK

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@contentandwell Yeah that seems to be the case with many people. They see multiple doctors and then that one magic person appears and finds the missing link. I have yet to find that magical person but I'm really glad you were diagnosed. It's always encouraging to hear the success stories. Was your liver causing neurological issues? If so can you be more specific of what was affecting you? Thank you for your concern, I truly appreciate it 🙂

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@slynnb

@johnwes5819 If you've had chem profile (which looks like liver enzymes, kidney function, lipids , electrolytes, LDL -. which is elevated with injury in body tissues, especially the heart, liver, kidney, muscles, brain, blood cells, and lungs, etc) and a CBC (complete blood count) and, i hope, a C-reactive protein test and ANA (for autoimmune diseases) all were in normal parameters, this is reassuring. AND if they've been repeated and are still reassuring, doubly so. Now these tests are not diagnostic but they certain often provide clues if something is potentially seriously wrong and/or progressing. If all seems pretty normal, I don't buy the current wastebasket diagnosis that many physicians turn to – oh, it's anxiety , it's depression. no, sometimes it is sloppy investigation and not keeping up with research on drug side effects and reactions and not thinking outside the proverbial box (because the "regular" box is easiest and I know docs are stressed and pressed for time). But don't give up. If I were you, I'd want a neurological exam (things like MS can sometimes present in unusual ways), a consult with an endocrinologist and a consult with someone who specializes in dysautonomia. There is also a chance you are being exposed to something in your environment – a chemical or pesticide.. something to consider, especially if your symptoms change when you are on a trip or away from your home for a while.

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@slynnb I like that you thought to mention environment and do things change when you're away from home. It's been documented that a guy felt better when he was on trips. There were paints, varnishes, etc. next to his furnace in the basement. The fumes were being pulled into the furnace and he was breathing them in throughout the house. Something similar may not be involved here but it's a valid question.

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@slynnb

@johnwes5819 If you've had chem profile (which looks like liver enzymes, kidney function, lipids , electrolytes, LDL -. which is elevated with injury in body tissues, especially the heart, liver, kidney, muscles, brain, blood cells, and lungs, etc) and a CBC (complete blood count) and, i hope, a C-reactive protein test and ANA (for autoimmune diseases) all were in normal parameters, this is reassuring. AND if they've been repeated and are still reassuring, doubly so. Now these tests are not diagnostic but they certain often provide clues if something is potentially seriously wrong and/or progressing. If all seems pretty normal, I don't buy the current wastebasket diagnosis that many physicians turn to – oh, it's anxiety , it's depression. no, sometimes it is sloppy investigation and not keeping up with research on drug side effects and reactions and not thinking outside the proverbial box (because the "regular" box is easiest and I know docs are stressed and pressed for time). But don't give up. If I were you, I'd want a neurological exam (things like MS can sometimes present in unusual ways), a consult with an endocrinologist and a consult with someone who specializes in dysautonomia. There is also a chance you are being exposed to something in your environment – a chemical or pesticide.. something to consider, especially if your symptoms change when you are on a trip or away from your home for a while.

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@slynnb I've had CRP, HS-CRP, ANA, and many CBC's and CMP's. They're all normal. I had an EMG done at my neurologist and 2 neurologist exams. Both giving me a clean bill of health. Unfortunately, there are no dysautonomia specialists in the entire state of Indiana according to the dysautonomia informational sites. I have yet to do any mycotoxin tests but it's certainly on my list.

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@pearlbaby7

@johnwes5819 It sounds like you've got a lot going on. There was one set of symptoms that was familiar to me which raised two questions for me: what is your blood pressure and what is your hemoglobin?

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@pearlbaby7 My blood pressure fluctuates a lot. It's usually at the 120/80 but during episodes, it can get up to 144/100. My hemoglobin was last checked a month ago and it was 15.3 and range was 13.0 – 17.7 g/dL.

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@johnwes5819

@pearlbaby7 My blood pressure fluctuates a lot. It's usually at the 120/80 but during episodes, it can get up to 144/100. My hemoglobin was last checked a month ago and it was 15.3 and range was 13.0 – 17.7 g/dL.

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@johnwes5819 I'm glad to hear your numbers are good. I was having issues whenever I got up to go to the fridge or restroom. By the time I got back to the couch my heart was beating fast, my oxygen levels were low until my heart rate slowed. At the cardiologist's office my blood pressure was 37/12. No one reacted to that. By the time my cousin called the sheriff to bring EMS to me and I got to the hospital my hemoglobin was 4.4 and went down to 4.2 before the blood transfusions started to turned it around. That's something you can mark as Not It.

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@pearlbaby7

@johnwes5819 I'm glad to hear your numbers are good. I was having issues whenever I got up to go to the fridge or restroom. By the time I got back to the couch my heart was beating fast, my oxygen levels were low until my heart rate slowed. At the cardiologist's office my blood pressure was 37/12. No one reacted to that. By the time my cousin called the sheriff to bring EMS to me and I got to the hospital my hemoglobin was 4.4 and went down to 4.2 before the blood transfusions started to turned it around. That's something you can mark as Not It.

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@pearlbaby7 I'm really so to hear that. Glad it's been caught though. Yeah, I have been to so many doctors and had so many tests that I have an excel spreadsheet in a google doc that I can show new doctors. Seems kind of over the top but I've realized that when you hand a doctor a stack full of physical papers, they skim through it but you can tell they get lost. Mine is actually organized by category like "Parasites/Stool/Bacteria", "Thyroid", "Vitamins". etc. This way it's all right there and neat.

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@johnwes5819

@parus My urine has been checked numerous times. No UTI's have been found.

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@johnwes5819 Okay and thanks for the reply.

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@johnwes5819

@pearlbaby7 I'm really so to hear that. Glad it's been caught though. Yeah, I have been to so many doctors and had so many tests that I have an excel spreadsheet in a google doc that I can show new doctors. Seems kind of over the top but I've realized that when you hand a doctor a stack full of physical papers, they skim through it but you can tell they get lost. Mine is actually organized by category like "Parasites/Stool/Bacteria", "Thyroid", "Vitamins". etc. This way it's all right there and neat.

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@johnwes5819 Great thinking!

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@johnwes5819

@contentandwell Yeah that seems to be the case with many people. They see multiple doctors and then that one magic person appears and finds the missing link. I have yet to find that magical person but I'm really glad you were diagnosed. It's always encouraging to hear the success stories. Was your liver causing neurological issues? If so can you be more specific of what was affecting you? Thank you for your concern, I truly appreciate it 🙂

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@johnwes5819 John, I had non-alcoholic cirrhosis, also called NASH cirrhosis and caused by fatty liver that has not been diagnosed. Apparently, I had it for many years (10 was suggested by the hepatologist) before it presented itself. I had some other symptoms, like a low platelet count, shaky hands, and others that seemed unrelated to anything. Then I suddenly had an episode of confusion. The PCP I had at the time called me on the phone and told me she thought I had Alzheimer's! After that first one I had more, every few weeks or so. They thought these episodes were a neurological problem, thus the neurologist involvement. He literally scoffed at the idea of Alzheimer's.
It took almost a year and a half after the first episode of confusion before I was finally diagnosed. The confusion episodes are called hepatic encephalopathy (HE). By that time I had a new PCP but he too did not diagnose the problem despite multiple symptoms that I discovered afterward were all typical of cirrhosis. A few of these episodes put me in the hospital and that was when the neurologist suggested liver, so they did an ammonia test and sure enough, my ammonia level was high. When you have cirrhosis your liver is not processing things as it should. Normally it would filter out the ammonia but when it does not, it can travel to your brain and cause HE.

Please feel free to ask any other questions you might have.
JK

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Your experience reminded me of the story of Susannah Cahalan in the movie "Brain on Fire". While the symptoms aren't the same, it took a doctor who looked for the rare "zebra" diagnosis to diagnose her with anti-NMDA receptor encephalitis. It literally saved her life. Prior to that diagnosis she was at one point told she was schizophrenic and put into a psych ward. I'm not saying her disease is causing your symptoms, but to point out that getting to a facility like Mayo that have all specialties under one roof and physicians who will work together and look outside the box for rare maladies could allow the puzzle pieces to be put together. Good luck and God bless. I hope you have a diagnosis soon.

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@johnwes5819

@contentandwell The University of Indiana is about 3 hours south of me. However I don't have any tests that raise concern other than the Hepatic Echo that says Parenchymal liver disease but it's broad. My AST and ALT are normal and I'm not jaundice. There's not much to go on to get me through the door.

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has anyone done the cortisol and adrenal function testing? If those are normal – then you can find yourself qualifying for a different set of doctors – but I've for SURE get those done. there is a "stim test" that takes a baseline level of cortisol and then following an injection of something (they never told me what it was) they will take more blood tests to measure cortisol again. Check it out.

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These symptoms are incredibly alarming! Are you in an area where alternative medicine is accepted? Alternative doctor? I have had very positive results with a good accuouncturist. Don’t go for fru fru aromas and music and incense. There is real scientific proof that it works if the accuouncturist knows what they’re doing. Also, get checked for Lymes disease.

Let me reiterate scout acupuncture, however. It works and it’s non invasive and non prohibitively priced. The worst that can happen is it doesn’t work, but you’re not adding anything to your body.

As you can, moderate exercise and fresh air – both of which can be accomplished by taking a walk everyday.

You have serious symptoms that should not be brushed off by any doctor.

I wish you luck and keep reaching out.

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