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.

@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….

@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 🙂

@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

@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….

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@johnwes5819
Hmmm, how distressing!

Liked by johnwes5819

@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 🙂

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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.

i am sorry to hear all of those symptoms you are getting, but did you try alternative medicine, a chinese doctor? that is my next step, i will try one of them, it is expensive, but i hear good things, cause myself i started with anxiety, panic attacks, sweating cold, depression, pain in my back, migraine, ecc… still taking one pill every night, and i have peptic ulcer now, my stomach still hurts, i only eat a few things a day, i am waiting to do another gastroscopy, hoping the results will be good, and then i will try alternative medicine, i wish you well, take care.

Liked by johnwes5819

@fde11

i am sorry to hear all of those symptoms you are getting, but did you try alternative medicine, a chinese doctor? that is my next step, i will try one of them, it is expensive, but i hear good things, cause myself i started with anxiety, panic attacks, sweating cold, depression, pain in my back, migraine, ecc… still taking one pill every night, and i have peptic ulcer now, my stomach still hurts, i only eat a few things a day, i am waiting to do another gastroscopy, hoping the results will be good, and then i will try alternative medicine, i wish you well, take care.

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I spent a tremendous amount of money in alternative medicine including Chinese. Boy I was hoping for the placebo effect if not anything. I still say look up low dose naltrexone!

@shelby99

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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@shelby99 I have an appointment with my doctor on Thursday. She's been talking about Naltrexone as well as DHEA. But it's not based off lab results. For instance, my DHEA was normal and yet she feels the need to have me take DHEA which doesn't make sense to me. But I will research the LDN and consider it. Thank you very much for all of your info. Any more tips, feel free to post them. 🙂

@johnwes5819

@shelby99 I have an appointment with my doctor on Thursday. She's been talking about Naltrexone as well as DHEA. But it's not based off lab results. For instance, my DHEA was normal and yet she feels the need to have me take DHEA which doesn't make sense to me. But I will research the LDN and consider it. Thank you very much for all of your info. Any more tips, feel free to post them. 🙂

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I tried LDN but my pain level was too great and I was not able to take oxycodone with it. I am now taking CDB oil capsules and am pleased with the results so far. I have, when needed, been able to take the oxycodone.

@barbbie

I tried LDN but my pain level was too great and I was not able to take oxycodone with it. I am now taking CDB oil capsules and am pleased with the results so far. I have, when needed, been able to take the oxycodone.

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Yes you cannot take any opiates with it. The reason I thought it might be good for John was not so much for pain but for his immune system. I thought maybe getting that functioning better would help other issues. I agree that I don’t feel LDN is the best option for pain relief. But your right with CBD or even THC with it. They say it’s a natural antibiotic. You can do LDN with cbd/thc. I’d have to look up DHEA. Is that for detoxing?

@johnwes5819

@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.

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@johnwes5819 John, most Doctors of Internal Medicine are MDs. DOs can also be internists. Most people believe that MDs know more than DOs but I personally have no idea. Highly regarded colleges like Dartmouth have DO programs now so I believe they are credible doctors. I think people are just skeptical because it's a relatively new type of physician. Here is a link to an explanation from the Dartmouth site:
https://www.dartmouth.edu/prehealth/other_health/osteopathy.html

Just as with MDs, I am sure there are DOs who are good and some who are not as good. As they say, what do they call the person who graduates last in the class at medical school? Answer: Doctor.
JK

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@johnwes5819

@shelby99 I have an appointment with my doctor on Thursday. She's been talking about Naltrexone as well as DHEA. But it's not based off lab results. For instance, my DHEA was normal and yet she feels the need to have me take DHEA which doesn't make sense to me. But I will research the LDN and consider it. Thank you very much for all of your info. Any more tips, feel free to post them. 🙂

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Just looked up the DHEA. I have a high genetic breast cancer issue. My mother died at 57 with bone cancer too so I personally wouldn’t take it. I also for some reason have high cholesterol ever since this illness. You should try the LDN. At least it can’t hurt trying it. And maybe a marijuana card. It definitely helps with head pain! I’m on so many antibiotics that the additional made me so tired (even just cbd) and I don’t really like the high. But I’ve had some bad head pain that I’ve used it and it (marijuana) does the help. I’m definitely going to use at least cbd when I get off antibiotics though!!

@johnwes5819

@shelby99 I have an appointment with my doctor on Thursday. She's been talking about Naltrexone as well as DHEA. But it's not based off lab results. For instance, my DHEA was normal and yet she feels the need to have me take DHEA which doesn't make sense to me. But I will research the LDN and consider it. Thank you very much for all of your info. Any more tips, feel free to post them. 🙂

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I just looked up the drug naltrexone and it states that it is used in alcohol and opiate addiction. I'm confused…

@afrobin You apparently Googled "naltrexone" but did not understand that LDN is what I believe was being mentioned on this page. .. Yes, LDN ( Low Dose Naltrexone) involves the same drug used to treat addiction but it has different effects and USES in very, very small amounts – SEPARATE FROM AND NOT RELATED TO ADDICTION. That's why it is used to treat autoimmune diseases and, sometimes, fibromyalgia. It's also used to treat several dermatological conditions and other conditions. I have no opinion on whether it is effectivebut it is being used by certain doctors and is being researched and has been for over 20 years ( you can find research papers in the National Library of Medicine).

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@contentandwell

@johnwes5819 John, most Doctors of Internal Medicine are MDs. DOs can also be internists. Most people believe that MDs know more than DOs but I personally have no idea. Highly regarded colleges like Dartmouth have DO programs now so I believe they are credible doctors. I think people are just skeptical because it's a relatively new type of physician. Here is a link to an explanation from the Dartmouth site:
https://www.dartmouth.edu/prehealth/other_health/osteopathy.html

Just as with MDs, I am sure there are DOs who are good and some who are not as good. As they say, what do they call the person who graduates last in the class at medical school? Answer: Doctor.
JK

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I prefer DOs to MDs. Most of my doctors are DOs. I find they have a better outlook on treating people with as little meds as possible. With my long allergy list to meds I find DOs far more sensitive to my needs. The last MD I saw for a procedure wanted to give me an antibiotic that produced anaphylaxis in me. He said it wasn't a true allergy, just a side effect. I refused to take it and he is no longer a doctor of mine. My PCP does OMM as part of my visit. He sees me for a half hour. He cares about me physically, mentally, and spiritually. He also happens to be the same age as my older son! My pain management doctor , also the same age as my older son and a DO, as did my PCP both asked me to be a patient of theirs – one through seeing me in an osteopathic clinic for osteopathic manipulative medicine and the other by a request from an older pain management doctor who couldn't deal with my allergies. They and my other DOs show more interest in the person they are treating than MDs who are looking for meds to get them out of the office. My husband's sleep doctor is a DO and the other day when my husband exhibited a strange behavior that has become normal to him, he has some form of dementia, the doctor pursued by asking relevant questions and asked me to get his other doctors to send him reports. He also expressed compassion for my situation. DOs aren't people who have been rejected by med schools as I use to hear. They just have, in my opinion, a deeper desire to help people in a different way than MDs. Osteopathy has been around for over a century.

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