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I'm having multiple odd episodes that are keeping me undiagnosed. Help
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.
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"Fatty liver" is a finding that is extremely common in the US population - it is primarily caused by the same factors that result in "prediabetes" and type 2 diabetes and often tied to metabolic syndrome .It isn't a disease, per se, although often called "fatty liver disease" ( or sometimes "fatty liver steatosis") - it is an umbrella term for having more fat than normal in your liver. Most people extra fat in their liver don't have symptoms but some people do , including fatigue and enlarged liver. It can progress but the opposite is also possible! Weight loss, a healthy diet and exercise are key! Good luck.
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1 ReactionHello, all -
Thought you might be interested in a brand new group dedicated to COVID-19 https://connect.mayoclinic.org/group/covid-19/ Mayo Clinic Connect just opened up. If you're interested in following it, click the +Follow in the upper right hand of the page. Please feel free to look through the discussions, participate where you'd like and start new discussions about topics relevant to any aspect of coronavirus, COVID-19.
You may have several things. You may have POTS (Postural Orthostatic Tachycardia Syndrome). The heart is not strong enough to pump blood to the extremeties when you stand or sit, but lying down helps. (episode 3)
You may also have low thyroid and a symptom of that is sensitive to cold. (episode 1)
You may also have celiac disease and that's why you are often constipated and have yellowish stools. Both can be symptoms of celiac disease. (episode 5) Have you tried the elimination diet to see if food bothers you? With celiac it is wheat/gluten.
This is incorrect information. Having POTS does NOT mean that your "heart is not strong enough..." It means your sympathetic nervous system is - to use non-medical terms - out of whack. In medical terms, POTS describes a common form of autonomic dysregulation characterized by excessive tachycardia (your heart beating over 100) upon standing in the presence of orthostatic intolerance. In other words, when you stand up, your autonomic nervous system doesn't send the correct signals quickly enough to tell the blood in your lower extremities to get it back to the heart to be pumped to the brain in a timely manner.. so you may feel light headed or even faint. Let's be careful not to frighten people into thinking , if they have POTS they have a weak heart. That's wrong. Just being deconditioned is often a cause and slowly getting back in shape can turn POTS around. Please see the NIH for correct information on POTS: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page
Thank you for the information. When I mentioned to my cardiologist that my HR can go up alot from lying down in my bed to getting up to go to the bathroom, and sometimes in my walk for no reason, his answer is the same as yours.. "conditioning". I do not feel faint or out of breath when thus happens. Actually I didn't know I even have this until I got my fitbit and notice this irregularity. I'm trying to get myself back to shape even though I have hip and leg pains. Hopefully it will get better.
I have type 2 diabetes and also. Stage 3 breast cancer and had mastectomy on my left breast. Would diabetes have caused that.
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1 ReactionHi @rach1009, welcome. What a beautiful picture of you and your little one. Huge smiles. I hope you'll add the picture to your profile. 🙂
When diagnosed with cancer, people often search for reasons why. What caused this? What did I do? Was it something I could've avoided? Etc.
Diabetes doesn't cause cancer. However, diabetes, especially type 2, can increase the risk of developing other conditions such as heart disease, kidney disease, and cancer. You can read more here:
- Diabetes and cancer: What you should know https://www.mdanderson.org/publications/focused-on-health/Diabetes-and-cancer.h26Z1591413.html
But remember, with cancer risk, it’s never just one thing,
Rach, I think you might like to join this discussion about diabetes and managing breast cancer in the Breast Cancer group.
- Managing Breast Cancer and Diabetes https://connect.mayoclinic.org/discussion/managing-early-stage-breast-cancer-and-diabetes/
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2 ReactionsJohn, please see an infectious disease specialist asap. Please know that not all doctors are created equal, do your research and find one that will listen to your concerns. They should do a blood smear checking for pathogens (bacterial and parasitic-including protozoa), check proteases and your IgE level as well as numerous other things. When you had your hormone panel done, did they check your estrogen levels? Did you go into any lakes or ponds before your symptoms began? I’m sure you’ve had a CBC done, was there anything unusual? Was your wbc-count normal?
I think you should look in POTS (Postural orthostatic tachycardia). It is often overlooked even though it's not uncommon. You need to see a cardiologist and ask to be tested for that specifically.
In my healthcare system cardiologist not available for quite some time. Advised pcp should have protocols to help with daily activities to lessen orthostatic intolerance/pots suspected symptoms. Simple things like sleeping with upper body elevated, sit side of bed before fully getting up, and legs up while resting with plenty of water throughout day really do seem to help. Hope this helped!🙂