A Disclaimer About My Postings. - Anxiety and Depre...

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A Disclaimer About My Postings.

JEG325 profile image

This is JEG 325. A nurse just took exception to my posting. She pointed out that worldwide only about 1/2 of 1% of all people have SJogrens. That includes the primary and secondary versions of this annoying disorder. She further claimed that people with anxiety and depression could well fantasize themselves into having just about any disease or disorder. So, I will address this concern....I only post general information for use by the public. I go to extremely well accredited sites and I quote their stats directly. Is it likely that anyone reading this post has Sjogren's Syndrome.I would say probably not. But, if you have the symptoms and the markers, does it hurt to be tested? Probably not. My father always said, 'an ounce of prevention is worth a pound of cure.' So, here is two pieces of advice. Just because I write about a rare disorder don't let yourself go crazy and assume that you automatically have this problem. On the other hand, if you legitimately meet the symptoms & markers don't be afraid to be tested either. Always be careful with any information you read and consider long and hard before acting on it. Here's wishing you all good health, mentally and physically....

15 Replies

The tennis player Venus Williams has this condition. I did have the test for this some time ago in connection with a general malaise. The test is done by a dentist and is non invasive. It involves sucking a bitter candy for a few minutes and then the saliva output is measured.

Agora1 profile image
Agora1 in reply to b1b1b1

I didn't know that b1. Everyday I learn something new on this forum :) xx

NCAQuilter profile image
NCAQuilter in reply to b1b1b1

I don't take advice about my health from a nurse! Yes, they have medical training, but not in medical diagnosis!.Your posting about the symptoms and markers is important, especially to someones who needs treatment and didn't realize it! One half of one percent is still at least 350,000 miserable people. And there may be more if more people were tested.

The reason I don't take advice from a nurse is, I have emphysema. I've never smoked, haven't been around smokers very much, yet here I am! My DENTIST suggested I be tested for a gene malfunction that messes with the heart, kidney, liver and lungs. Her son has kidney problems because of the gene. My daughter's sister-in-law and her husband are RN's, and have been for about 30 years, working in a hospital. Both said no gene does 'that' and I couldn't have emphysema because I never smoked! I was tested for the rogue gene, and emphysema. Guess what! I have both! When I tell a nurse in a Dr's office, they roll their eyes.

So, don't rely on nurses opinions. Rely on medical tests and doctors. They know.

JEG325 profile image
JEG325 in reply to NCAQuilter

NCAQuilter, I responded to her directly and pretty much let her have it. My last two doctors ignored my low vitamin D level, telling me I was fine. For D, 50 is normal, below 30 is low, below 10 is life-threatening. My number had slid all the to 14.1! The day I saw the last doctor for the last time, I had a massive potassium low that caused my sugar level to drop to a dangerous low and I passed out just before I could eat dinner. Does that sound fine to you? I finally went out and got some vitamin d-3 over the counter and started taking it. All of my symptoms improved right away, About 2 weeks ago I found a 2017 university study that concluded beyond the shadow of a doubt that super low vitamin D causes super low potassium & magnesium. The whole thing turns into a vicious cycle that collapses in on itself, worsening rapidly if nothing is done. My last doctor told me to take that info with a grain of salt. I now take potassium, magnesium citrate & vitamin D-3. I fired the damned doctor. My symptoms improved about 50% though with the just the addition of those 3 things. My point is, I did the research (something I'm outstanding at), applied it and had to manage my own health. I start a new doctor in Nov.. She's from India and not near so dead set against alternative medicine. But, some damned nurse is not gonna stop me from reaching out around the world to help everyone who undertsands what I'm posting. Thanks for the positive feedback. I needed it as I was feeling a bit down after I wrote that post.

NCAQuilter profile image
NCAQuilter in reply to JEG325

Keep it up. The postings on this site that refer to medications are given, I've found, to help others. We need every bit of insight we can get. The three 'alternative' meds you've found are great at helping people with depression. With winter coming, I'm stepping up my D3 to cope with SAD. My doctor is not just an MD, she's a DO. A DO is an MD who has taken extra courses that study alternatives to pharmaceuticals.She has helped me a lot. A caution: research (which you do) before taking an alternative or vitamins. Some are toxic, such as iron for older men. Rely on your pharmacist to help.

Keep up the good work. We need people like you.

Calm_mama profile image
Calm_mama in reply to JEG325

Hey there JEG325

I should have told you that I am a nurse practitioner. I have been an RN for 25 years and an NP for 18 of those years. I am not here to give medical advice so much as to give support and encouragement to people with anxiety and the resulting depression, coming mostly from a personal experience rather than from a healthcare background. I am not a mental healthcare provider, but I see mental health issues often because, well, they are simply so common.

It seems to me that quite a large number of people looking for answers and help on this site are in the throes of anxiety and often have become depressed by their symptoms. It also seems that a large subset of these folks are suffering with health and somatic anxiety. At a certain stage of anxious suffering, people are very prone to suggestibility. I see a lot of suggestibility on this site. Frequently, people travel down the detours and rabbit holes of searching for the medical problems that may be causing their physical symptoms, when in fact, these searches can delay recovery. Not always, but often the better approach is to look no further than the basic workup, and the assurance by the health care professional that their symptoms are, in fact, directly related to anxiety. When that acceptance grows, the symptoms diminish, and people start to feel better. I have seen this over, and over again in friends, family members, and yes, in patients I've worked with.

I see you've "let me have it" . Please feel free to continue to "let me have it" :) . I will feel free to continue to respond to your posts that contain health related information and recommendations, with my goal being to provide facts if I know them, and context for the information you provide, within the anxiety paradigm. Not everyone here is in a state of suggestibility- and many here can most certainly put information into context quite well. But I do think it's that important for those people who are in a state of high suggestibility to put a reaction to the suggestion that they may have some rare condition into the correct balance in the context of their anxiety.

Now you and I actually agree on some things. We agree that there is a middle ground. extrapolating from all you say, I think we also agree that the holistic approach and alternative medical approaches are underutilized - I would say that's true for all areas of medicine. I think we agree more on things than disagree. I'm actually looking forward to more discussions with you. I'm not here daily, but when I am, and if we interact, I think that as long as we are respectful in our interactions, that you and I are going to get along beautifully.

JEG325 profile image
JEG325 in reply to Calm_mama

I think I'm already in love. I do have a couple of exceptions to your statements. First of all, no one should accept anything as a 100% fact. The 'assurances' of doctors are just about as often in error as they are accurate. That's because all fields of medicine are basically only understood poorly at best. It's like trying to have a Model T mechanic work on a 2018 Jaguar. Therefore, those of us who are capable should always research our own problems if we can and try to find out what the latest cutting edge researh says. I happen to be very good at that. But, where I may differ from some, is that I want my doctor to listen to me without looking down his nose at me and to investigate any pertinent info I find. Not to pick on you directly, because I think you have a beautiful spirit, but, my last two primary care providers were Nurse Practitioners. They did a miserable job of taking care of me because they never looked beyond the primary diagnosis of Hypokalemia to see what else might be going on. In other words, why was I continually bleeding off high amounts of potassium? Finally in desperation, I started researching my problems. Both Nurse Practitioners ignored a very, very low Vit D level. In even worse desperation I started researching it myself. I found cutting edge 2017 university research that conclusively proved that super low vitamin D causes super low potassium & magnesium in a horrible downward spiral. If left untreated it could actually cause you to die! And low and behold, low Vit D is a major contributor to anxiety and depression symptoms, which is why I mentioned it to start with! But, all 3 of those things need checked if you have a major deficiency in any of them. My last Nurse Practitioner insisted I was just fine, though later after that very same visit, I passed out due to another random potassium crash. I have added Vit D to my prescription potassium & magnesium citrate improving my health right away. But, I figured that out, not my health care provider. Now, I'm dealing with super dryness problems. Henceforth, my interest in Sicca and Sjogren's Syndrome. I will have myself tested because I value my health over and above the words of a health care provider. I have some responsibility for taking care of myself through all walks of life and I aim to exercise it. But everyone reading this hear me clearly: Neither my opinion, nor Calm Mama's opinion or a holistic approach to medicine is intended to replace primary care physicians. Your goal should be to work with them. But, never be afraid to ask questions or do your own research either. Remember, as I always say. 'The doctors work for you, not vice versa.' Also remember that the beautiful spirit known as Calm Mama is entitled to her opinion too. Otherwise, I wish her and all people reading the posts on this site, good mental and physical health....

I don't have a problem with people sharing their knowledge and opinions about medical issues, it's not a diagnosis or professional advice but I don't see the harm in suggestions or recommendations. People can look into it if they think it's relevant or interesting but if they've got any sense they'll get it checked out by a professional. I can't count the number of times I've hit a brick wall with fully qualified medical professionals and then done my own research and found out what the problem was. Ok so I can't diagnose myself or anyone else but my health is partly my own responsibility and I usually find most doctors are glad if you can shed some light and give them a starting point. My psychiatrist is quite closed minded about ADHD symptoms and treatments so I regularly have to wave some guidelines under his nose to get him to take me seriously and one of the GPs at my local surgery (I'm in the UK) is so unbelievably arrogant it's impossible to communicate with him properly but generally I find they take you seriously and look into your concerns if you have done your own research. I would probably still be struggling with ADHD and fibromyalgia being untreated if I hadn't told my doctors I thought I had it and my daughter's autism would probably still be undiagnosed cos she's so high functioning she was under the radar everywhere except at home. Nurses or anyone else on here haven't got access to our medical records and can't test us through a forum so they're no better informed than the rest of us who can read, everyone's opinion is as valid as anyone else's online and there's nothing wrong with sharing an opinion with someone who asks for it, as long as they don't pretend to be a doctor or anything. Haven't these judgemental naysayers got anything better to do than try to police people who they have nothing to do with? I for one am grateful for people shedding some light if I have a query and I'm not naive enough to take everything I read literally so I think people who complain about you and others doing that should mind their own business unless they've got anything constructive to say!

JEG325 profile image
JEG325 in reply to rach1402

Thank you, rach 1402. I never said I was a doctor, merely that I was researching some info for Starrlight and I thought I would share it. What they do with it is up to the readers. I've had plenty of problems trying to get doctors to take me serious. They ignored my critically low vit d until I finally did something about it myself. I have several of the symptoms of Sjogren's Syndrome & will probably have myself checked. I feel that's the responsible thing to do. If I help 1 other person, then I will have been well justified in what I'm doing. Peace, love, light & happiness to you....

rach1402 profile image
rach1402 in reply to JEG325

Thanks and the same to you 👍 I hope you find out what is bothering you soon and get taken seriously without too much of a battle!

Thank you. I have a lot of experience because a lot of people have helped me and my family. I'm trying to pay it forward. Thank you for the affirmation. I also find your posts to be very informative.

I believe that if a patient says something is wrong, it is the responsibility of a health care provider to get to the bottom of it! To be brushed off is not only insulting, but dangerous. If I feel something is wrong, something IS wrong. I may be a hypochondriac, but that is a mental disease that needs treatment!!!! I believe the 'brush-offers' are quacks who have built boxes for patients, and if you don't fit into one of their boxes YOU are wrong. 'Nuf said.

JEG325 profile image
JEG325 in reply to NCAQuilter

I couldn't agree with you more. My last Nurse Practitioner was an especially offensive 'brush-offer', I have many years of knowledge about herbs, vitamins and supplements. I plan on mentioning it little at a time and in the proper context. I will not be dissuaded by the poor general class of medical doctors we have today. On the other hand, I am a peaceful man myself. If Calm Mama wants to talk peacefully, I'm all for it. I like your responses and I look forward to more comments from future posts of mine. Be extra happy and healthy for me....

Right now I am healthy and happy. My husband played several songs for me that I found very inspiring. They could be taken in a religious context, but I'm taking them in the context of the people helping me, especially my husband. Susan Boyle has a beautiful voice. Her album HOPE is especially meaningful now: You'll Never Walk Alone, You Are the Wind Beneath My Wings, Amazing Grace, Bridge Over Troubled Waters, and others. Before her appearance on America's Got Talent, she sang in a church choir, so that may influence her choice of songs. Listen and enjoy. A wonderful way to meditate!

JEG325 profile image
JEG325 in reply to NCAQuilter

Thank you for that. I will look it up and add it to my playlists. I love music.

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