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.

@predictable

This is to confirm what I said earlier: Vitamin K is the most common antidote for Warfarin (Coumadin). I say this with personal knowledge, being a user of Warfarin for more than four years and having "enjoyed" a stroke when I got careless with my Coumadin doses last summer. Martin

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@predictable Martin, I understand now why you wanted to make sure everyone understood the issues with Vitamin K and Warfarin. Do you have a choice in which blood thinner your doctor prescribes? Would one of the newer ones be a better choice if you forgot to take it once in awhile? Do you monitor your blood pressure too? I'm glad that you are able to talk about your experience and what you learned. My mom's issues with blood clots in her legs are because she can't walk very well and is sedentary in a wheel chair. Her Eloquis is expensive, but it doesn't require the regular blood testing of Warfarin. She's on it as a preventative now.

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@carmelo1morrone

I am going to ask one question. Have you had a MRI before this for something else and did they use a dye?

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@carmelo1morrone Never had an MRI before the last 2. Never had dye in my system either. Thank you for asking. 🙂

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@afrobin

Excellent advice! I don't see where this is written but if you are taking 50,000 IU of vitamin D3 per day, FIFTY TIMES the suggested dose…that could be the cause of all your symptoms. Why would you take so much? I don't understand. Excess vitamin D causes all kinds of reactions in your body. I read that it can take a year to rid your body of the excess amount of vitamin D. Have your blood levels checked,
Fatty liver is very common among those who are overweight.
I think it is important to drink plenty of water every day to flush your system and go for big walks to stimulate all your internal organs and clear your mind. Put sun screen on if you live in a warm climate so that you avoid even more vitamin D from the sun.
Good luck, John!

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@afrobin I'm no longer taking it because my blood levels are in range now. But it was 50,000 IU of vitamin D3 once per week not daily. After my kidney stone, I started taking it alongside vitamin K2. Thank you for replying!

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@slynnb

@johnwes5819 Somehow, I missed the info that you are taking mega doses of Vitamin D . This can be toxic! Hypervitaminosis D is NOT caused by sun exposure ( it is erroneous advice to tell you it is) nor by diet . Your body regulates the amount of vitamin D produced by sun exposure, and even fortified foods are not loaded with excess vitamin D. The problem with too much vitamin D is that it causes calcium to accumulate in your blood. Symptoms of hypercalcemia include – weakness, bone pain, kidney problems nausea, vomiting, confusion, abdominal pain.. and other symptoms from MANY different parts of your body.

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@slynnb I was taking 50,000 iu of vitamin D3 once per week not daily. Then I developed a kidney stone a few weeks after taking it. After that, I started taking vitamin K2 alongside the D3. My blood levels are now in range so I'm no longer taking it. But my issues had been going on long before I even started D3.

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@becsbuddy

@johnwes5819 I’m so sorry you’ve been going thru all of this! I strongly encourage going to a university medical center. When I was very sick last year, I begged for an MRI, but the doctors here could barely interpret it. My husband got on the phone and called University of Colorado Health. From my symptoms,etc, they put me into the neurology clinic and I’m being well taken care of. Yes, it means a long drive to Denver, but… I sure wish you luck. Let us know what happens! Becky

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@becsbuddy Glad to hear you're doing better. Yeah, I wish I could get into a university. I'm still trying hopefully sooner than later. All the best to you. 🙂

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@jenniferhunter

@slynnb @johnwes5819 I wanted to pass along something I learned from my environmental medicine doctor about Vitamin D supplements. He does test my blood vitamin D levels to optimize them, and the supplement he has me take is both Vitamin D and Vitamin K2 because the K2 is to regulate and prevent the excess calcium to be deposited in the blood stream. That supplement is from Orthomolecular, and just called K2 D3. Vitamin K is really important, and if you don't get this in your diet, it should be in your Vitamin D supplement.
Here is an explanation of how K2 inhibits the deposition of calcium on the wall of blood vessels.
https://www.nutraceuticalbusinessreview.com/technical/article_page/Vitamin_K2_new_research_confirms_essential_role_in_heart_health/114933

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@jenniferhunter Thank you for the info. I was already aware of this. After I was taking vitamin 50,000 IU of vitamin D3, a few weeks later was when I had my first kidney stone. After I passed the stone I started taking 100 mcg of K2 daily to accommodate access calcium. Glad to hear someone else knew this. Thanks for the reply.

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@mehron

It is usually very frustrating when there are symptoms but all labs are normal. On the other hand, normal labs are encouraging, indicating major body systems are functioning well despite whatever process may be going on. We do not know you medical history, family history, social history or travel history. The episodes you described, as you mentioned, do not clearly point to a specific diagnosis. If we were to only go by US findings of liver, and intermittent chills plus a variety of vague symptoms:

Unusual causes of paranchymal liver disease on imaging may include metabolic disorders like Hemochromatosis or Wilson's disease or Autoimmune disease. Earlier stages could be hard to diagnose. Dr Vupalanchi is a good hepatologist at St Vincent Hospital.
When dealing with fluctuating unexplained chronic symptoms it may be appropriate to evaluate your home and work environment for potential exposure to toxins through water, air vents, car, medications, partners or food. Your travel history may have exposed you to diseases doctors in Indiana do not look for, like malaria that can cause intermittent chills. About 12 years ago it affected a number of people in Chicago. Ask your primary provider for related testing or consider consulting an Infectious disease specialist for chronic viruses that my reactivate causing vague symptoms including chills like ebv. Lyme and Erlichiosis disease may be hard to diagnose. Lyme antibody will be negative for many weeks after an infection so early negative labs may be false. Since you live in Indiana, consider seeing Dr Misra at IU, infectious disease.
Dr Imad Shawa is an internist/pulmonologist/critical care doctor affiliated with st Francis Hospital in Indiana. He is very experienced in work up of complicated or unusual cases. However he primarily sees pulmonary patients in private practice.
If no clear diagnosis is made, an option is to optimize healing ability of your own body by trying a "lifestyle medicine program" while you continue your search Avoid alcohol to protect your liver. Best wishes.

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@mehron I truly appreciate your reply. I've considered Wilson's disease but was never brought up by any of my doctors. They're not moving on autoimmune disease because my ANA was negative. I'm sure there are loopholes in that test but nobody considered moving forward to further investigate. Are there standard tests you know of for environmental toxins? The only ones I know of are at the naturopathic testing sites but their test cost an arm and a leg. Is there any more common testing facilities that do this?

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@afrobin

Excellent advice! I don't see where this is written but if you are taking 50,000 IU of vitamin D3 per day, FIFTY TIMES the suggested dose…that could be the cause of all your symptoms. Why would you take so much? I don't understand. Excess vitamin D causes all kinds of reactions in your body. I read that it can take a year to rid your body of the excess amount of vitamin D. Have your blood levels checked,
Fatty liver is very common among those who are overweight.
I think it is important to drink plenty of water every day to flush your system and go for big walks to stimulate all your internal organs and clear your mind. Put sun screen on if you live in a warm climate so that you avoid even more vitamin D from the sun.
Good luck, John!

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Hi:
I take Vitamin D2 and Vitamin D3, one is a prescription and the other is over the counter. So I take Vitamin D2 at 50,000iu per week and a 5,000 Vitamin D3 every day. I have Secondary Hyperparathyroidism and all the sunshine will not help me at all. It’s important to know your numbers and get tested, thank goodness for my Cardiologist that discover my severe Vitamin D, low Calcium and my Osteoporosis. Every bone in my body was hurting me for over 15 years and Doctors thought I was crazy.

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@johnwes5819

@mehron I truly appreciate your reply. I've considered Wilson's disease but was never brought up by any of my doctors. They're not moving on autoimmune disease because my ANA was negative. I'm sure there are loopholes in that test but nobody considered moving forward to further investigate. Are there standard tests you know of for environmental toxins? The only ones I know of are at the naturopathic testing sites but their test cost an arm and a leg. Is there any more common testing facilities that do this?

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Hi:
Yes, you can asked your Primary Doctor for a toxins test, but you might have to pay out of your own pocket or unless your Primary Doctor is willing to write a letter to your Health Insurance Company or if your Doctor indicates she/he is looking for a certain disease. I had Mercury and 12 other toxins in my body. My Health Insurance did pay for my tests. I had to pay for the medication because I took the natural approach. It was well worth it.

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@mehron

It is usually very frustrating when there are symptoms but all labs are normal. On the other hand, normal labs are encouraging, indicating major body systems are functioning well despite whatever process may be going on. We do not know you medical history, family history, social history or travel history. The episodes you described, as you mentioned, do not clearly point to a specific diagnosis. If we were to only go by US findings of liver, and intermittent chills plus a variety of vague symptoms:

Unusual causes of paranchymal liver disease on imaging may include metabolic disorders like Hemochromatosis or Wilson's disease or Autoimmune disease. Earlier stages could be hard to diagnose. Dr Vupalanchi is a good hepatologist at St Vincent Hospital.
When dealing with fluctuating unexplained chronic symptoms it may be appropriate to evaluate your home and work environment for potential exposure to toxins through water, air vents, car, medications, partners or food. Your travel history may have exposed you to diseases doctors in Indiana do not look for, like malaria that can cause intermittent chills. About 12 years ago it affected a number of people in Chicago. Ask your primary provider for related testing or consider consulting an Infectious disease specialist for chronic viruses that my reactivate causing vague symptoms including chills like ebv. Lyme and Erlichiosis disease may be hard to diagnose. Lyme antibody will be negative for many weeks after an infection so early negative labs may be false. Since you live in Indiana, consider seeing Dr Misra at IU, infectious disease.
Dr Imad Shawa is an internist/pulmonologist/critical care doctor affiliated with st Francis Hospital in Indiana. He is very experienced in work up of complicated or unusual cases. However he primarily sees pulmonary patients in private practice.
If no clear diagnosis is made, an option is to optimize healing ability of your own body by trying a "lifestyle medicine program" while you continue your search Avoid alcohol to protect your liver. Best wishes.

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Hello @mehron

First, let me welcome you to Mayo Connect. I so appreciate all the helpful suggestions you provided for @mehron. The reasoning behind the suggestions was impressive.

As you are new to the Connect community, would you like to introduce yourself to us? From your post can I assume that you have had experiences similar to @mehron or perhaps you have some involvement in the medical field? Please feel free to share more about yourself as you are comfortable so.

I look forward to you continuing to post.

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@jenniferhunter

@predictable Martin, I understand now why you wanted to make sure everyone understood the issues with Vitamin K and Warfarin. Do you have a choice in which blood thinner your doctor prescribes? Would one of the newer ones be a better choice if you forgot to take it once in awhile? Do you monitor your blood pressure too? I'm glad that you are able to talk about your experience and what you learned. My mom's issues with blood clots in her legs are because she can't walk very well and is sedentary in a wheel chair. Her Eloquis is expensive, but it doesn't require the regular blood testing of Warfarin. She's on it as a preventative now.

Jump to this post

Jennifer, I have studied the literature on the anticoagulants and remain committed to Warfarin (Coumadin). When I started on it, it was the only anticoagulant that had a ready antidote. That became crucial to me after a friend and neighbor on Warfarin died when the ER to which he was taken by public ambulance had no Warfarin antidote on hand, so they called for a helicopter to take him to another hospital. He died enroute from a brain bleed. I sang at his funeral.

There are now two anticoagulants for which antidotes are on hand in ERs that care about the quality of their life-and-death services — for Warfarin and Pradaxa. No antidote for Eliquis has yet been approved by the FDA.

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@johnwes5819

@jenniferhunter Thank you for the info. I was already aware of this. After I was taking vitamin 50,000 IU of vitamin D3, a few weeks later was when I had my first kidney stone. After I passed the stone I started taking 100 mcg of K2 daily to accommodate access calcium. Glad to hear someone else knew this. Thanks for the reply.

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@johnwes5819, @jenniferhunter Oh my goodness. That happened to me after being prescribed a high dose D3 regimen. Kidney stones. At the ER they thought it couldn’t be a kidney stone because I was female. Thanks for connecting the dots for me. Be safe and protected today. Chris

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@predictable

Jennifer, I have studied the literature on the anticoagulants and remain committed to Warfarin (Coumadin). When I started on it, it was the only anticoagulant that had a ready antidote. That became crucial to me after a friend and neighbor on Warfarin died when the ER to which he was taken by public ambulance had no Warfarin antidote on hand, so they called for a helicopter to take him to another hospital. He died enroute from a brain bleed. I sang at his funeral.

There are now two anticoagulants for which antidotes are on hand in ERs that care about the quality of their life-and-death services — for Warfarin and Pradaxa. No antidote for Eliquis has yet been approved by the FDA.

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@predictable @artscaping This has been an interesting discussion and we've learned a lot by sharing experiences. I'll ask some questions of my mom's doctors about Eloquis. I wasn't aware that having an antidote for a blood thinner could be an issue. Thank you.

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I didn't have all of those just some and I have Guillian Barre Syndrome and I am almost sure they done know why or how its starts, but it has some of those symptoms.. Sorry I don't have more positive words.

Liked by johnwes5819

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Thought I'd share another "episode" that may or may not be helpful. Another part of having chills and shakes. Usually is accompanied by diarrhea, frequent clear urination. I'll drink the normal amount I always drink to stay hydrated but it's nothing over the top. But lots of clear urination is usually following the chills, shakes, and diarrhea.

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