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.

@afrobin

Hi slynnb, You're getting me started. I have a particular beef where statins are concerned. My pharmacist told me that years ago the 'normal' level of cholesterol was a certain number. Then Big Pharma reduced what is considered normal. Then it reduced it yet again!…so that today 44% of men over 60 in the US are on statins! They are not innocuous chemicals. There are side effects such as memory loss, muscle loss, liver damage…
Big Pharma is very aggressive and powerful in the US. If a doctor doesn't toe the line and prescribe to their standard, they can be in major trouble. A doctor cannot take the chance of an impact on his career by NOT prescribing statins to everyone whose cholesterol is above Big Parma's 'normal' standard.
The European Society of Cardiology and the European Atherosclerosis Society recommend that only 15% of people 60+ be on statins. Apparently now it is not cholesterol that one should be monitoring to prevent heart attacks and strokes but one's C reactive protein. My husband who has always had very high cholesterol (and who refuses to take statins like his siblings do) has his CRP monitored regularly and because he eats a very healthy diet AND is a big walker, it is normal.
Here is a Canadian documentary that explains that ONLY a man in his forties who has had a heart attack should be on statins.
https://www.cbc.ca/natureofthings/episodes/the-cholesterol-question
And that is my anti Big Pharma rant for the day! LOL

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@afrobin @slynnb Regarding prescription drugs, patients do have a choice with their physician. There is a branch of medicine that doesn't promote the use of prescription drugs, but instead tries to prevent a health problem with lifestyle changes. I go to one of these M.D. doctors who is an environmental medicine doctor. You can find a list of them at https://www.aaemonline.org/find.php They are not mainstream and may or may not be in network for insurance plans. The pioneer in this field was the doctor who started this practice, and you can find information on the website. https://www.ehcd.com/

Liked by Dee

@carmelo1morrone

John I mentioned this very thing that I am in the process of testing for and that is Gadnolinium in your body, which is what is used to intense the pictures on a MRI. Some of the very items you are mentioning as results this dye, doe not all are mention that you describe, but who knows. I am doing the test , which is a 24 hour urine test and found that my hospital lab does the test and Lab Corp does not. I have some of the symptoms and I am doing the test to rule out regular symptoms for NATURAL ageing process.

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The actor chuck Norris is sueing over that due to his wife having problems after MRIs. The problem is symptoms could be from other things too. I think it would be safe to say if you didn’t have symptoms and then had them after the MRI then it’s possible.

Liked by Dee

@jenniferhunter

@afrobin @slynnb Regarding prescription drugs, patients do have a choice with their physician. There is a branch of medicine that doesn't promote the use of prescription drugs, but instead tries to prevent a health problem with lifestyle changes. I go to one of these M.D. doctors who is an environmental medicine doctor. You can find a list of them at https://www.aaemonline.org/find.php They are not mainstream and may or may not be in network for insurance plans. The pioneer in this field was the doctor who started this practice, and you can find information on the website. https://www.ehcd.com/

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I suffer from severe anxiety from getting chronic illness beginning 48 hours after vaccinations. Something is so wrong with the system. And yes BIg Pharma controlls it.

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@shelby99

I suffer from severe anxiety from getting chronic illness beginning 48 hours after vaccinations. Something is so wrong with the system. And yes BIg Pharma controlls it.

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Are you working on your gut biome? I go to a doctor of naturopathy (university graduate in science) and she has me on a gut healing regimen. 80% of our immune system is in the gut.

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@slynnb

HA! You are preaching to the choir here… latest research shows lowering LDH ( the "bad" cholesterol) to levels many docs recommend increases stroke risk in women, too.. What is most important is the HDL/LDH ratio, but a lot of doctors don't pay attention to it.. just the total and it's easier to write a prescription than to look at all the details, including lifestyle.

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I meant "LDL" not "LDH", Also the risk is for hemorrhagic stroke ( of course, always observe the caveat that if something may raise the risk , that doesn't mean it raises the risk for everyone ) and the research specifically is talking about LDL below 70. The current "ideal" LDL tha many doctors push is 100 ( again, in my opinion, they should be looking at the HDL/LDL ratio, primarily). See Neurology, April 10: https://n.neurology.org/content/early/2019/04/10/WNL.0000000000007454.long

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@afrobin

Are you working on your gut biome? I go to a doctor of naturopathy (university graduate in science) and she has me on a gut healing regimen. 80% of our immune system is in the gut.

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I guess the answer is yes and no. I take a good probiotic but the reason is because I take a lot of antibiotics. I’ve been on daily antibiotics for almost 3 years.

Liked by Dee

I believe you need to go to an internist who is “trained to treat simple and complex problems…coordinating patient care with other specialists as difficult medical problems arise. I got this definition from PIEDMONTHEALTHCARE.COM. Hopefully there should be a choice of several internists close by. They are pretty common. My internist was awesome and solved a lot of complex issues for me. Also I have put you on my prayer lis.t! Hope this helps.

@coralbells1

I believe you need to go to an internist who is “trained to treat simple and complex problems…coordinating patient care with other specialists as difficult medical problems arise. I got this definition from PIEDMONTHEALTHCARE.COM. Hopefully there should be a choice of several internists close by. They are pretty common. My internist was awesome and solved a lot of complex issues for me. Also I have put you on my prayer lis.t! Hope this helps.

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@coralbells1 Thank you. I'm glad to hear you have found a doctor that was able to solve your issues. That's great. I've visited several internists, and all of them were at a loss. There's only so much testing they can do, and if they don't find anything, they don't have a next move. Sadly. Thank you for the prayers. Thank you.

@johnwes5819

@coralbells1 Thank you. I'm glad to hear you have found a doctor that was able to solve your issues. That's great. I've visited several internists, and all of them were at a loss. There's only so much testing they can do, and if they don't find anything, they don't have a next move. Sadly. Thank you for the prayers. Thank you.

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About 11 years ago I went to NIH looking for answers. I went down with a dx of Stiffman Syndrome. I got laughed at and yelled at for wasting their time. A couple of months ago I went for EMG studies and had contractions. I asked the doc if he knew what it was. Yes,it's Stiff Person Syndrome! In early 2000 I went to Boston, Greenwich, CT, and NYC. I received three separate dx. Autonomic dysfunction, orthostatic hypotension, and small fiber neuropathy. No one put together until 2012 when a pain management doc said that I had CRPS. Medicine is imperfect and I know I have a very unique body. Just with StiffPerson Syndrome I am one in a million! I don't do well with medications. Between allergies and bad side effects, I try to stay away from as much as possible. I do better with hands on thus osteopathic manipulative medicine works for me in many ways. My spiritual life keeps joy in my life and my nurturing skills puts my attention on my husband with dementia and my four children and five grandchildren. I feel fortunate to be able to still drive and also to do some chores from my power wheel chair, keep financial things in order, and spend time in my Christian walk praising and praying. Pain is part of my life. It doesn't rule my life but once in a while when I have had it and resort to oxycodone. Getting diagnosed is not a walk in the park but when someone finally hits the nail on the head, I have found tremendous relief, even when there is no cure.

God bless you! You are an example to us all. Keep as well as possible!

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@johnwes5819

@coralbells1 Thank you. I'm glad to hear you have found a doctor that was able to solve your issues. That's great. I've visited several internists, and all of them were at a loss. There's only so much testing they can do, and if they don't find anything, they don't have a next move. Sadly. Thank you for the prayers. Thank you.

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@johnwes5819 – I send your description of episodes to a friend who has a great deal of experience in seeking and obtaining diagnoses for her own "odd" symptoms. This is her response: A couple of thoughts to pursue.

Dysautonomia – http://www.dysautonomiainternational.org/page.php?ID=34 this may explain some of the symptoms, but it's hard to diagnose.

An endocrinologist can test for Adrenal Insufficiency. The best test for that is a Cortisol treat that must be done about 8 am.

A gastroenterologist can test for Exocrine Pancreatic Insufficiency (EPI). That would explain the gastric pains, light stools and would cause low vitamin levels that would then lead to some of the other symptoms.

These are just some possibilities, given the symptoms. I hope this helps.

Dysautonomia International:
What is dysautonomia? Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the automatic functions of the body that we do not consciously think about, such as heart rate,…
dysautonomiainternational.org

Yes.. i've suggested and posted about dysautonomia repeatedly over the course of many weeks re @johnwes5819 's problems.. Dysautonomia, however, describes an imbalance between the sympathetic and parasympathetic nervous system and not the cause of that imbalance – in many cases the cause is never determined but other disorders can be the basis of it.

@barbbie

About 11 years ago I went to NIH looking for answers. I went down with a dx of Stiffman Syndrome. I got laughed at and yelled at for wasting their time. A couple of months ago I went for EMG studies and had contractions. I asked the doc if he knew what it was. Yes,it's Stiff Person Syndrome! In early 2000 I went to Boston, Greenwich, CT, and NYC. I received three separate dx. Autonomic dysfunction, orthostatic hypotension, and small fiber neuropathy. No one put together until 2012 when a pain management doc said that I had CRPS. Medicine is imperfect and I know I have a very unique body. Just with StiffPerson Syndrome I am one in a million! I don't do well with medications. Between allergies and bad side effects, I try to stay away from as much as possible. I do better with hands on thus osteopathic manipulative medicine works for me in many ways. My spiritual life keeps joy in my life and my nurturing skills puts my attention on my husband with dementia and my four children and five grandchildren. I feel fortunate to be able to still drive and also to do some chores from my power wheel chair, keep financial things in order, and spend time in my Christian walk praising and praying. Pain is part of my life. It doesn't rule my life but once in a while when I have had it and resort to oxycodone. Getting diagnosed is not a walk in the park but when someone finally hits the nail on the head, I have found tremendous relief, even when there is no cure.

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You are a true inspiration!

@johnwes5819

@coralbells1 Thank you. I'm glad to hear you have found a doctor that was able to solve your issues. That's great. I've visited several internists, and all of them were at a loss. There's only so much testing they can do, and if they don't find anything, they don't have a next move. Sadly. Thank you for the prayers. Thank you.

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@johnwes5819 Same here, my internist was at a loss as to what I had, it took a neurologist to suggest it was my liver. I chose an internist as my PCP because I was told by friends, some of whom are doctors, that they are better diagnosticians than family practice doctors. They probably are, but mine sure missed what my problem was.
JK

@afrobin

I really believe that 9 times out of 10, it is medications that cause a myriad of health issues. I cannot emphasize enough that one must look up and learn about the side effects of any drug you take. And aim to get replace the drugs with lifestyle changes…where possible. I suffered for a year with coughing fits only to discover that it was the blood pressure medication that was causing them. How did I find out? The doctor never asked, "Oh, btw, do you cough much?". No, I decided to check the side effects of the triamterene & HCTZ and sure enough, COUGHING was a big side effect. Had I known I could have spare myself a year of coughing fits…that actually caused a bladder cystocele that I now have to have operated on. I am telling you, RESEARCH anything and everything you put into your body because it is never without consequences! And you are the only person who is really invested in improving your health. The doctor is not.

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@afrobin I agree that we need to research everything, and be our own advocate, but I do think most doctors do want to see your health improve. If your doctor does not, you should find a better doctor.
I have a couple of issues about my PCP but I really do believe he cares about my health. I know when I was diagnosed with non-alcoholic cirrhosis he went the extra mile and researched to suggest where he thought the best place to go for treatment would be. I think most of my doctors are caring people.
JK

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