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 Has anyone checked your liver and gall bladder function? The liver produces bile which emulsifies fats during digestion, and it is what gives color to your stool. The bile is stored in the gall bladder and squirts it into the small intestine through the bile duct. If anything is blocking the duct such as gallstones, it will prevent some of the bile from getting through. Gall stones can become huge like the tip of your finger. I don't have them, but a friend of mine has had them and she was very ill before surgery removed them. If the timing of how fast things move through the intestines is sped up, the stool can be lighter. The stool is actually white in color if there is no bile. that of course is a question to ask a doctor because one cause of a blocked bile duct could be pancreatic cancer that is in the area and a mass could compress the duct. I also sent you a message.

Hi, @johnwes5819– thanks for this helpful breakdown of your story down into your most bothersome episodic symptoms. Thanks to @jenniferhunter for the insights. I thought that in addition, you may also be interested in some input from @hopeful33250 @predictable @oldkarl @dawn_giacabazi and @sandytoes14.

Here is the previous post @johnwes5819 mentions, for reference https://connect.mayoclinic.org/discussion/its-been-a-year-and-a-half-im-an-undiagnosed-mystery/.

What symptom are you most concerned about presently?

@jenniferhunter

@johnwes5819 Has anyone checked your liver and gall bladder function? The liver produces bile which emulsifies fats during digestion, and it is what gives color to your stool. The bile is stored in the gall bladder and squirts it into the small intestine through the bile duct. If anything is blocking the duct such as gallstones, it will prevent some of the bile from getting through. Gall stones can become huge like the tip of your finger. I don't have them, but a friend of mine has had them and she was very ill before surgery removed them. If the timing of how fast things move through the intestines is sped up, the stool can be lighter. The stool is actually white in color if there is no bile. that of course is a question to ask a doctor because one cause of a blocked bile duct could be pancreatic cancer that is in the area and a mass could compress the duct. I also sent you a message.

Jump to this post

Thank you for the reply and message @jenniferhunter

This was my result from my hepatic echo.

**
Real-time sonographic examination right upper quadrant obtained. The gallbladder is unremarkable. No gallstones are seen. No biliary dilatation was seen. Common bile duct measures 2 mm. Heterogeneous known uniform echo pattern liver is seen. No discrete focal liver lesions were seen. No solid or cystic lesions were seen. No intrahepatic bile duct dilatation was seen. Findings suggest liver parenchymal disease. Correlate clinically. Pancreas not seen due to bowel gas. No fluid seen right upper quadrant.
**
It made sense that it says "findings suggest liver parenchymal disease" but after seeing two gasterologist/liver specialist, they both agreed it was possible fatty liver which is very common. So there was no more look into the liver.

@lisalucier

Hi, @johnwes5819– thanks for this helpful breakdown of your story down into your most bothersome episodic symptoms. Thanks to @jenniferhunter for the insights. I thought that in addition, you may also be interested in some input from @hopeful33250 @predictable @oldkarl @dawn_giacabazi and @sandytoes14.

Here is the previous post @johnwes5819 mentions, for reference https://connect.mayoclinic.org/discussion/its-been-a-year-and-a-half-im-an-undiagnosed-mystery/.

What symptom are you most concerned about presently?

Jump to this post

Hi @lisalucier. Thank you for the reply 🙂

There's not really one that's more concerning than the rest. They all seem to work against me. The depressive episodes I have are really scary but I'm pretty sure it's something in my body that's causing the depression. Most of the doctors I've seen don't have time to further investigate. For instance all of my CT and MRI's show abnormal qualities to me after researching. Some which look like ulcers, lesions or cancer. But when you bring it up to a doctor, they don't want to go through finding a radiologist to look over them again or even look at them themselves.

Something is not right, changes are happening, and my body is on the fritz. I do know that I've always been warm and I would go out in 40-degree weather in a t-shirt because it felt good to me. However 2 years ago when my health declined, my hands and feet are always freezing and I need to bundle up and constantly keep a space heater running at home. I get really bad lower back pain after standing for a while, and then my blood pressure goes high and my heart rate jumps high. It could be a form of pots but I don't faint. It's honestly really hard to figure out which direction to start in. That's why I've been to a lot of doctors. Chasing the symptoms is really all you can do. However, I need a team that communicates.

@johnwes5819

Thank you for the reply and message @jenniferhunter

This was my result from my hepatic echo.

**
Real-time sonographic examination right upper quadrant obtained. The gallbladder is unremarkable. No gallstones are seen. No biliary dilatation was seen. Common bile duct measures 2 mm. Heterogeneous known uniform echo pattern liver is seen. No discrete focal liver lesions were seen. No solid or cystic lesions were seen. No intrahepatic bile duct dilatation was seen. Findings suggest liver parenchymal disease. Correlate clinically. Pancreas not seen due to bowel gas. No fluid seen right upper quadrant.
**
It made sense that it says "findings suggest liver parenchymal disease" but after seeing two gasterologist/liver specialist, they both agreed it was possible fatty liver which is very common. So there was no more look into the liver.

Jump to this post

@johnwes5819 Are they giving you a plan to do something about fatty liver? It can be reversed, and if not reversed it can lead to many problems. It is common these days due to our diet and if left to get worse it can lead to cirrhosis, which is what happened to me. I never had a fatty liver diagnosis, no symptoms, which is typical. It has become such a problem that it is being suggested that it should be screened for if a patient is either overweight or diabetic. When I was finally diagnosed and went to a hepatologist, she said I probably had cirrhosis for 10 years before it presented itself.
JK

Hi @johnwes5819. I am as puzzled as you are about your complex of symptoms. I looked at your other message, and it prompted me to respond right away because what I saw stood out so clearly as a potential problem — 50,000 International Units of Vitamin D3. That's a very high daily dose of Vitamin D3 and might be the source of several of your troublesome symptoms. I suggest that you have a direct conversation in person with a doctor you trust, first thing in the morning, about the Vitamin D3 dose. Second, you made no mention of what kind of doctors are on your medical team. Given the range of your symptoms and their mysterious relationships, would you consider arranging for thorough examination by an endocrinologist; this could reveal something about your body chemistry that is not now known — for example, the catecholamines, hormones made by the adrenal glands (epinephrine (adrenalin), norepinephrine, and dopamine). Third, would it be possible for you to undergo a complete examination by Mayo Clinic at Rochester, Minnesota, or Scottsdale, AZ, or Jacksonville, FL? Mayo or a similarly equipped complex of clinics with a history and reputation of patient-directed, full range, diagnosis and treatment would be a good option to consider. We can help you make arrangements with Mayo. Martin

@contentandwell

@johnwes5819 Are they giving you a plan to do something about fatty liver? It can be reversed, and if not reversed it can lead to many problems. It is common these days due to our diet and if left to get worse it can lead to cirrhosis, which is what happened to me. I never had a fatty liver diagnosis, no symptoms, which is typical. It has become such a problem that it is being suggested that it should be screened for if a patient is either overweight or diabetic. When I was finally diagnosed and went to a hepatologist, she said I probably had cirrhosis for 10 years before it presented itself.
JK

Jump to this post

@contentandwell Thanks for the reply. I'm not on any plan for the liver. I was told it was nothing to worry about from 3 different liver specialists. Not really sure what I can do except bother a 4th doctor. This area is really rough for finding superior doctors. But I definitely suspect something is up with my liver given all the symptoms.

@predictable

Hi @johnwes5819. I am as puzzled as you are about your complex of symptoms. I looked at your other message, and it prompted me to respond right away because what I saw stood out so clearly as a potential problem — 50,000 International Units of Vitamin D3. That's a very high daily dose of Vitamin D3 and might be the source of several of your troublesome symptoms. I suggest that you have a direct conversation in person with a doctor you trust, first thing in the morning, about the Vitamin D3 dose. Second, you made no mention of what kind of doctors are on your medical team. Given the range of your symptoms and their mysterious relationships, would you consider arranging for thorough examination by an endocrinologist; this could reveal something about your body chemistry that is not now known — for example, the catecholamines, hormones made by the adrenal glands (epinephrine (adrenalin), norepinephrine, and dopamine). Third, would it be possible for you to undergo a complete examination by Mayo Clinic at Rochester, Minnesota, or Scottsdale, AZ, or Jacksonville, FL? Mayo or a similarly equipped complex of clinics with a history and reputation of patient-directed, full range, diagnosis and treatment would be a good option to consider. We can help you make arrangements with Mayo. Martin

Jump to this post

@predictable Thank you for the reply. I was given the vitamin D3 at a high dose to get my levels back in range and now it is back in range. However, my symptoms have been the same since before I started the vitamin D3 and nothings gotten worse or better. I would love to go to the Mayo Clinic. Unfortunately, I can't afford it and my insurance has me tied to the state I'm in. I've had lots of labs done and wish there was a way to just send everything over to them but I know it doesn't work that way. I'm in Indiana and there really isn't much out here as far as teams that work together for a patient. It almost sounds like make-believe to have that kind of service out here. So far I've seen 2 cardiologists, 1 electrophysiologist, 3 gastrologist/liver specialists, 2 allergy specialists, 2 therapists, 2 psychiatrists, 1 endocrinologist, 1 hepatologist, 1 urologist, 3 DO's, 3 MDs, and 1 ND.

Luckily through all of this, I've been able to keep my sanity and keeping motivated for answers. I would love to visit the Mayo but financially luck isn't on my side right now. I haven't been able to work in 2 years and disability laughed in my face 3 times.

Well @johnwes5819 I'm in deep sympathy for your feelings of uncertainty about where to turn. Your collection of medical personnel is impressive, but may I ask: Who's in charge? That is, does your medical team have a leader and a communication system to share personal information? Were you referred to that variety of specialists by a personal care physician who does that for a living? I hope we can track down a promising medical practice in Indiana that could offer you the kind of universal diagnosis and treatment that you need. Meantime, your focus and intensity in search of causes and treatments are awesome. There must be a medical service in Indiana that could help you manage and direct your care. Martin

@johnwes5819

Hi @lisalucier. Thank you for the reply 🙂

There's not really one that's more concerning than the rest. They all seem to work against me. The depressive episodes I have are really scary but I'm pretty sure it's something in my body that's causing the depression. Most of the doctors I've seen don't have time to further investigate. For instance all of my CT and MRI's show abnormal qualities to me after researching. Some which look like ulcers, lesions or cancer. But when you bring it up to a doctor, they don't want to go through finding a radiologist to look over them again or even look at them themselves.

Something is not right, changes are happening, and my body is on the fritz. I do know that I've always been warm and I would go out in 40-degree weather in a t-shirt because it felt good to me. However 2 years ago when my health declined, my hands and feet are always freezing and I need to bundle up and constantly keep a space heater running at home. I get really bad lower back pain after standing for a while, and then my blood pressure goes high and my heart rate jumps high. It could be a form of pots but I don't faint. It's honestly really hard to figure out which direction to start in. That's why I've been to a lot of doctors. Chasing the symptoms is really all you can do. However, I need a team that communicates.

Jump to this post

Hello @johnwes5819

I'm inclined to agree with Martin. @predictable, that a consult with an endocrinologist might be helpful. Some of your symptoms sound like a problem with your parathyroid (different than the thyroid, but in a similar location). You might ask specifically to have a blood test done to check on the parathyroid hormone levels. I would also encourage you to seek a second opinion at a Mayo facility or at the very least a university medical center with a multidisciplinary approach.

I hope you find some answers. Will you post again?

@predictable

Well @johnwes5819 I'm in deep sympathy for your feelings of uncertainty about where to turn. Your collection of medical personnel is impressive, but may I ask: Who's in charge? That is, does your medical team have a leader and a communication system to share personal information? Were you referred to that variety of specialists by a personal care physician who does that for a living? I hope we can track down a promising medical practice in Indiana that could offer you the kind of universal diagnosis and treatment that you need. Meantime, your focus and intensity in search of causes and treatments are awesome. There must be a medical service in Indiana that could help you manage and direct your care. Martin

Jump to this post

@predictable Thank you for your sympathy. it started with me jumping through the hoops of a primary care doctor sending me to a psychiatrist. I tried 6 months worth of antidepressant medications that made me feel worse overall. With no background in medical but someone that has a great grasp on learning new information. I took it upon myself to read 100's to 1,000's of the long boring mayo clinic assays that nobody fully reads but I did. I started with biochemistry, then cellular biology, and so on. When I went to see the psychiatrist for a 7th prescription to try, I asked her about vitamins and the precursors to serotonin. She basically said, "none of that matters" that's when I knew the doctors I was seeing were cookie cutter doctors that belong at band-aid hospitals. So I had to research for myself. Because of my random adrenal surges that didn't seem to have a rhyme or reason, I had my cardiologist check my urine for catecholamines to exclude pheochromocytoma and I've been at this journey by myself. I have an ND right now who's work with me but it's been a slow process. I've only been seeing her for a few months. There hasn't been one doctor in charge because they either run out of ideas or my issues are just too complex. I would love to have a captain of the ship but for right now it's just me. Most of my doctors have told me I'm more knowledgeable than their students. I really don't want to know any of this stuff I just want to fix myself since none of the doctors are.

@johnwes5819

@contentandwell Thanks for the reply. I'm not on any plan for the liver. I was told it was nothing to worry about from 3 different liver specialists. Not really sure what I can do except bother a 4th doctor. This area is really rough for finding superior doctors. But I definitely suspect something is up with my liver given all the symptoms.

Jump to this post

@johnwes5819 If there is a chance that you have fatty liver you really should see a hepatologist. If that is impossible, at the very least look it up and find out what you should not be eating/drinking. I wish mine had been discovered sooner so I could have avoided cirrhosis and a liver transplant.
The university of Indiana has a liver transplant program so I am sure there must be hepatologists there and other gastroenterologists. Is that anywhere near you?
JK

@hopeful33250

Hello @johnwes5819

I'm inclined to agree with Martin. @predictable, that a consult with an endocrinologist might be helpful. Some of your symptoms sound like a problem with your parathyroid (different than the thyroid, but in a similar location). You might ask specifically to have a blood test done to check on the parathyroid hormone levels. I would also encourage you to seek a second opinion at a Mayo facility or at the very least a university medical center with a multidisciplinary approach.

I hope you find some answers. Will you post again?

Jump to this post

@hopeful33250 Thank you for your reply. I would like to speak with an endocrinologist. I had visited one that needed a referral but I needed something wrong in order to be referred. So my doctor used the low vitamin D diagnosis as a reason to see him last year. Well after visiting, he said my labs looked fine and his daughter that quit college because of anxiety and depression had the same symptoms as me. So he was biased because of his daughter. He gave me a number for a psychiatrist and that was it. No further testing, no extensive work up. Just "your labs from your other doc look fine except for vitamin D, take a vitamin D supplement, and call this psychiatrist, take care". I've never been to another endo since. That was in March of last year. I would love to visit the mayo or university but my insurance kind of has me tied down to Indiana.

@contentandwell

@johnwes5819 If there is a chance that you have fatty liver you really should see a hepatologist. If that is impossible, at the very least look it up and find out what you should not be eating/drinking. I wish mine had been discovered sooner so I could have avoided cirrhosis and a liver transplant.
The university of Indiana has a liver transplant program so I am sure there must be hepatologists there and other gastroenterologists. Is that anywhere near you?
JK

Jump to this post

@contentandwell I can try another liver doctor but they tend to think I'm wasting my time.

@contentandwell

@johnwes5819 If there is a chance that you have fatty liver you really should see a hepatologist. If that is impossible, at the very least look it up and find out what you should not be eating/drinking. I wish mine had been discovered sooner so I could have avoided cirrhosis and a liver transplant.
The university of Indiana has a liver transplant program so I am sure there must be hepatologists there and other gastroenterologists. Is that anywhere near you?
JK

Jump to this post

@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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