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

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

Dear John I have a lot of your symptoms which in my case I partly explain by the fact that I have a short transit because I had a colon resection. Pain can raise Blood Pressure & your fast heartbeats are probably the results of anxiety. It is frightening to have symptoms we cannot explain..so we become anxious & that by itself can create weird symtoms. It is a vicious circle. I have also been disgnosed with IBS Yellow stools are probably caused by a lack of digestive enzymes. What helps me with all of the above is meditation. As we age our neuro system like our other systems deteriorate & create strange hard to explain symptoms as well. Good 🍀🍀🍀🍀

Liked by 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

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.

@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.

Jump to this post

@shelby99 Lyme disease really has horrible effects. I think the test has to be done within a certain window of time or it's not accurate.

There is a doctor in MA who I have heard is the foremost expert on Lyme, being an area where it is relatively common. The wait for an appointment is many months. We have a number of family members who have it, and have recurring problems from it.
JK

Liked by Parus

@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?

@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.

@contentandwell

@shelby99 Lyme disease really has horrible effects. I think the test has to be done within a certain window of time or it's not accurate.

There is a doctor in MA who I have heard is the foremost expert on Lyme, being an area where it is relatively common. The wait for an appointment is many months. We have a number of family members who have it, and have recurring problems from it.
JK

Jump to this post

Yes Im right next door to MA and there is a good Lyme literate doctor in Cumberland RI (Lyme center) too. I agree about the test and unfortunately the better one Igenex you may have to pay a bit for but it also might be worth it. I paid so much in alternative treatment w/o success. Now I lived on handfuls of antibiotics daily for almost 3 years and it’s helped but now afraid to get off. I’m on another post cause my symptoms are the same as Morgellons (and not the delusional one). Although I’ve been told that which blows my mind since I was a mess. Being ill certainly causes anxiety and depression when your not getting answers. I have symptoms similar to ptsd from suffering so long (almost 10 years).

Liked by johnwes5819

@afrobin

Hello John, You are really suffering terribly. I feel very bad for you because it sounds like you are going through absolute hell!
Check the meds you are on. They are OFTEN the cause of all kinds of nasty side effects. For example, a side effect of meds for rheumatoid arthritis is paranoia and psychosis!
Often when a patient in hospital presents with a host of seemingly unrelated symptoms, they call in an internist to figure things out. Can you go to see one? Don't worry about the cost if that is an issue because your health is precious and it sounds like your quality of life is seriously compromised. Can you insist on being admitted to hospital to undergo a battery of tests to figure out what is causing all these symptoms? No one should have to live with such a condition and have no idea what the diagnosis is. Let us know what happens…hopefully very soon!

Jump to this post

@afrobin Thank you. I am suffering in the worst way. I'm currently not on any medications and haven't been for a long time. Unfortunately, I've been to a number of internists and none of them have been able to help me. When you think Internist, or DO, you may think more inclined or knowledgable than an MD, unfortunately, this isn't the case. I'm a living testament to that. I wish it was that easy but I've had lots of tests including all of the basics.

I was dx with autonomic dysfunction years before I finally got a dx of Complex Regional Pain Syndrome. I probably had the CRPS when I was dx with the autonomic dysfunction but I don't think many knew about CRPS 20 years ago. My range of temperatures 93 to 98. Heart rate 43 – 140. Episode 3 sounds a lot like autonomic dysfunction. I have Reynauds but I also have small fiber neuropathy confirmed by two biopsies that cause very cold feet and hands, but then so does CRPS! No one has ever treated my a d. It does leave me wondering at times.
I have resolved my yellow stool by taking a product called Energy Greens in a smoothie. You might give it a try. Just google it. I think the founder's name is Yuri Elkaim – not sure of the spelling of that last name. I use it every morning.
Keep seeking. You WILL find!

Liked by johnwes5819

And don't forget probiotics!

Liked by shelby99

@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.

Jump to this post

@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.

@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

Jump to this post

@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.

@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

@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

Jump to this post

@sirgalahad I sent you a PM.

@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.

Jump to this post

@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 🙂

Please login or register to post a reply.