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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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @slynnb "@johnwes5819 I absolutely agree that medications are a very frequently overlooked cause of sometimes debilitating and..." + (show)
@slynnb

@johnwes5819 I absolutely agree that medications are a very frequently overlooked cause of sometimes debilitating and worrisome symptoms - and by "overlooked," I mean by physicians as well as people taking the drugs! A case in point is what I predict will be revealed as an extremely serious problem over the next decade or two : common protein pump inhibitors taken by countless millions and now sold over the counter. From heart arrhythmias and fatigue from low magnesium to unexplained dizziness (often blamed on "anxiety" ), to an increased risk in serious kidney disease, heart attacks and pancreatic cancer and more are now known potential sequalae ..an increased risk in dementia is not proven but suggested by some studies. yet people keep popping them. And doctors too often keep declaring them as "safe and effective" - because, let's face it, they calm symptoms easily and it's quicker and easier than to deal with other potential causes and solutions to GERD and heartburn (and, no, PPIs now are fairly well proven to NOT prevent esophageal cancer as was previously claimed and some research suggests the opposite..)The US is a nation of drug takers and while I totally support medication that is needed and I promote and love and respect science, and research, it is disheartening to consider how many people take multiple drugs they do not necessarily need with little thought or attention paid to what they may be doing to that person and how multiple drugs interact - and if they could be causing strange symptoms. Having said all that, I still think it is highly unlikely, John, that you are suffering from multiple ills. I still think the best explanation so far that covers most all of your symptoms is a form of dysautonomia.

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@slynnb Yeah it's certainly not medications because I'm not on any and haven't been for some time. I certainly think it could be some form of an autonomic disorder. It was one of my first guesses a few years ago when this started but it's hard to find doctors that understand it. I've had 2 cardiologists decline because they simply don't dabble in that at all.

REPLY
johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @sirgalahad "johnwes5819 I would strongly recommend if you are in USA and not far from the Mayo..." + (show)
@sirgalahad

johnwes5819 I would strongly recommend if you are in USA and not far from the Mayo clinic they have 3 locations or near UCLA that you get a referral to be assessed for Dysautonomia or what I suggested .the other thing is to go online and look up Mims pharmaceutical book .which has all medications listed and referred to by doctors and specialist and have a look at the medications and see what the contraindications are involved and or see if the medications aren't reacting with each other and the constipation and insufficient fluids and kidneys issues and liver and gut issues could mean inflammation of the gut lining and intestine . .the important thing is to get someone to write down all the meds you are on and have a look and query if too many meds . but a review at mayo clinic and or Ucla if in America would be strongly advisable

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@sirgalahad Thank you for your reply. I truly appreciate it. I'm currently not on any medications and haven't been for quite some time. Unfortunately, I can't afford to go to Mayo. Just traveling funds alone. I haven't had employment in almost 2 years because of this. I was hoping the 30 doctors I'd see in this area would have been able to help but that wasn't the case.

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slynnb | @slynnb | Apr 5, 2019

@johnwes5819 You haven't had a tilt table test, then. UAB has an extensive autonomic testing department. I would call them and get a referral to someone in your area or to some place you can travel to. https://www.uabmedicine.org/web/medicalprofessionals/autonomic-testing-laboratory Or try Vanderbilt - they have a well-known autonomic dysfunction clinic. https://ww2.mc.vanderbilt.edu/adc/ 615-322-2318

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1 reply
johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @sirgalahad "@lisalucier , I forgot with my Autistic to ask @johnwes5819 if he has had blood work..." + (show)
@sirgalahad

@lisalucier , I forgot with my Autistic to ask @johnwes5819 if he has had blood work done for his liver LFT and alt and ast ,kidney function tests urea ,uric acid and creatine, Thyroid function and parathyroid , piturity gland ,adrenal gland for a tumor, Pancreatic enzymes and also gall bladder and bile . sorries because of the diverse symptoms I cant thin k of which one to pick for you to focus .except due to medications I would look at the health of your liver and kidneys and gall bladder and for to look at the hormone levels in particular thyroid and also to rule out diabetes . I am a bio medical scientist and as didn't point any areas in your torso of pain sights and tightness and uncomfortable . I am not a doctor I diagnose from blood tests and morphology screening and pass the results onto the consultant and specialist doctors I am also autistic . hugs and I hope you get to mayo clinic and get a good proper work up to actually identify what's is triggering your symptom's

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@sirgalahad I sent you a PM.

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johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @shelby99 "Hi john, I was diagnosed with depression and anxiety for similar reasons despite having big wounds..." + (show)
@shelby99

Hi john, I was diagnosed with depression and anxiety for similar reasons despite having big wounds and hair loss, and multiple odd symptoms including body temperature going down to 94. I just wanted to tell you that the conventional Lyme test suck. Although I’m not suggesting it’s that I’m just saying that if you continue to have medical symptoms without answers you may want to get a specialty Lyme test done by igenex.

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@shelby99 Thank you so much for replying. Sorry to hear about the depression and anxiety. I know how you feel and it's a pain in the ass, to say the least. I had my Lyme test done through my ND and she went through MDL.
http://www.mdlab.com/resources/testing-menu/
If you type in Lyme to the search you can see the list of tests. I've had all of those done and everything came back negative. Not sure what your thoughts are. Thanks so much for your reply 🙂

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1 reply
johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @hopeful33250 "@johnwes5819 I don't recall you mentioning seeing a urologist, but given the frequent urination, it might..." + (show)
@hopeful33250

@johnwes5819 I don't recall you mentioning seeing a urologist, but given the frequent urination, it might be worth another specialist appointment.
What do you think about seeing a urologist or nephrologist?

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@hopeful33250 I saw a nephrologist last year because my urine came back with high protein, so I assumed kidney issue but it was blown off and said it's common. Then fast forward about 6 months to the development of my first kidney stone (due to high dose Vitamin D, and my doctors not recommending K2 along with it, I developed a kidney stone) then I went to a urologist for the kidney stone. He checked my prostate and said I have nothing to worry about. However......My symptoms? Apparently, just keep on trucking, right? Doctors are the worst....

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1 reply
johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @parus "@johnwes5819 Lyme is difficult and has a way of acting up when other things are going..." + (show)
@parus

@johnwes5819 Lyme is difficult and has a way of acting up when other things are going on. It seems as though it lies dormant at times. Anymore it is hard to tell what symptoms mean as they can mimic other things. Any type of an infection can cause mood issues. I do know I have as @shelby99 pointed out that Lyme can be difficult to diagnose after so long. Conventional tests will not detect thus after a certain amount of time-don't know the time frame. I have always been an outdoors, nature type person and was diagnosed with Lyme in 1983 and little was known. Seems little is still known.
Again, only a comment as I can only go with how it has been for me.

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@parus Sorry to hear that. Yeah my Lyme test was done through MDL. http://www.mdlab.com/resources/testing-menu/

My ND says they're good but I'm so not knowledgable in Lyme, I wouldn't even know where to begin with trustworthy testing. How were you finally diagnosed in 1983? Also what were your symptoms? If you still have symptoms, which ones? Thanks so much for replying. I appreciate it 🙂

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johnwes5819 | @johnwes5819 | Apr 5, 2019
In reply to @slynnb "@johnwes5819 You haven't had a tilt table test, then. UAB has an extensive autonomic testing department...." + (show)
@slynnb

@johnwes5819 You haven't had a tilt table test, then. UAB has an extensive autonomic testing department. I would call them and get a referral to someone in your area or to some place you can travel to. https://www.uabmedicine.org/web/medicalprofessionals/autonomic-testing-laboratory Or try Vanderbilt - they have a well-known autonomic dysfunction clinic. https://ww2.mc.vanderbilt.edu/adc/ 615-322-2318

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@slynnb Thank you for the info. I will look into these. Fingers crossed. 🙂 xx

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 5, 2019
In reply to @johnwes5819 "@hopeful33250 I saw a nephrologist last year because my urine came back with high protein, so..." + (show)
@johnwes5819

@hopeful33250 I saw a nephrologist last year because my urine came back with high protein, so I assumed kidney issue but it was blown off and said it's common. Then fast forward about 6 months to the development of my first kidney stone (due to high dose Vitamin D, and my doctors not recommending K2 along with it, I developed a kidney stone) then I went to a urologist for the kidney stone. He checked my prostate and said I have nothing to worry about. However......My symptoms? Apparently, just keep on trucking, right? Doctors are the worst....

Jump to this post

@johnwes5819
Hmmm, how distressing!

REPLY
shelby99 | @shelby99 | Apr 5, 2019
In reply to @johnwes5819 "@shelby99 Thank you so much for replying. Sorry to hear about the depression and anxiety. I..." + (show)
@johnwes5819

@shelby99 Thank you so much for replying. Sorry to hear about the depression and anxiety. I know how you feel and it's a pain in the ass, to say the least. I had my Lyme test done through my ND and she went through MDL.
http://www.mdlab.com/resources/testing-menu/
If you type in Lyme to the search you can see the list of tests. I've had all of those done and everything came back negative. Not sure what your thoughts are. Thanks so much for your reply 🙂

Jump to this post

I’m so sorry. I guess a lot of people go through these mystery diseases that cause so much agony. I had a lot of trouble with the medical community and still do. I was vaccinated when this all started so I’m not a happy camper. It’s been a long time too (10 years). A good 4 years straight I just wanted to die rather than continue the road. My Lyme test came up negative too but I’m treated with antibiotics by a Lyme literate doctor. Its helped thus far. I’m also on low dose naltrexone. It helps with modulating the immune system and inflammation. I don’t think it has any bad side effects. Maybe you could talk to your ND about it. They been giving it off label for many ailments. You can look it up yourself too. Low Dose Naltrexone.

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