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

Posted by johnwes5819 @johnwes5819, Mar 10, 2019

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

@hopeful33250 Yes it's very difficult with the insurance restrictions. Indiana has Indiana University but from what I've read they don't operate as Mayo or Cleveland clinic does. https://iuhealth.org/

I've been doing research on my own and I certainly can see how hyperparathyroidism comes to mind. I had calcium and PTH done and those were in range. I will definitely do more research though. Every doctor I've seen says "Your tests are very thorough and well thought out, who's your doctor?" and I always answer "me". because most of the tests were demanded by me sadly I would love to work extensively with an endocrinologist but I've had bad experiences just like with other specialty doctors. Maybe the Mayo Clinic could be a possibility for me someday but financially it's unfeasible for me right now Thank you so much for your advice and thoughts. I really appreciate it all. 🙂

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

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@parus

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

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Good one👍🏻Forgot that😊

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@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 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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@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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@francisco82

I feel your pain. I'm going through this myself. I freak out. I feel like loosing the battle but also know that it's our mind. Only one that can control its us . Dont let it control you. Stay positive.

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@francisco82 Thanks for the advice. Good luck to you

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@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.

Jump to this post

@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

Jump to this post

@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.

Jump to this post

@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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