I feel incredibly hopeless.

in reply to @morganjane I am so sorry about your dilemma, and totally understand, really. I have been to so many doctors, have been dismissed by more, and have been left feeling hopeless like you. Like you, I do not suffer from hypochondria, and I generally do not complain about my health problems, even to my doctor sometimes, because I know he could care less. This is my experience, as the medical system has changed so drastically, as many know.
I suffer from many of the problems you have described, which are suggestive of an autoimmune disorder. Have you been evaluated by a rheumatologist? Keep in mind that many tests for autoimmune disorders may come up negative, but this does not necessarily mean that you do not have an autoimmune disease, as has been explained by my doctor. The gum disease is a result of the dry mouth, probably.
You mentioned crying, are you depressed? I know that I cry a lot, and I figure that is just part of my healthcare journey or my general personality of a "sensitive artist." I am currently tapering off of an antidepressant because my doctor and I both agree that my depression is not due to a chemical imbalance, but rather a result of the stress and certain things going on in my life presently.
Sometimes we have a "rare" disease, one that takes years to diagnose, and this seems to be my situation. Beginning in 2000, I began losing weight quite rapidly and unintentionally, dropping from 125 to 93 pounds as of today. I have been told this may be due to the fact that my liver and pancreatic ducts are dilated and that one of the side effects of this problem is no appetite. I deal with it.
Have you had a physical lately? That may be of benefit, especially in light of the many symptoms you described. One thing that caught my eye was the urinary hesitancy, and I too had this problem and was referred to a urologist who performed many tests which led to me receiving a neurostimulator to help my bladder. It works. I am on my second implant because the first one was not MRI compatible. You might want to find out if you can see a urologist in this regard. The device really is helpful, especially since I was constantly getting UTI's as a result of having to use catheters. It is worth looking into.
The temperature issue, is it hormonal? I have the same problem, and while my OB/GYN initially thought my problem was hormonal, and suggested I drink black cohosh tea, she now thinks the problem is more suggestive of a malignancy, and I am being checked for the same. However, I have heard from many women who have said that the tea is very helpful. Amazon has some great selections, and it might be worth a try.
You have IBS? Can more fiber be added to your diet? You can buy fiber pills if you do not want to take that powder stuff, which frightens me ever since someone told me that after they tried it with water, the powder "blew up" in her mouth and she could not swallow it. LOL. I know this is not funny, I was just recalling the visuals as I was typing this.
I do not know what to say to you about the weight gain, other than that you mentioned that you crave sweets and carbs. Can you try healthier food options when you have these cravings? I know it is hard because I too have a sweet tooth and the other night I ate an entire bag of those chocolate/peppermint squares, and the results were "official." I have been told I have IBS, but with chronic diarrhea, and that really it is colitis. Do you have a gastro specialist?
I have finally accepted that I have a rare disease, and there is a terrific website for those of us who have a rare disease. However, I would certainly try to get a complete physical, as well as the referrals I mentioned previously.

It certainly sounds like you have a lot of different things going on, and while we want our doctors to be magicians, they are not. Many should not be doctors in the first place, in my opinion. Medical care has changed, and you are correct that often you do not have enough time to even ask questions when you do get an appointment. Last year a doctor threw me out of his exam room while I was in the middle of a question, Suffice to say, I no longer see him, or any gastro specialist for that matter. It can be maddening trying to get an answer. I have a hematologist who I often have to send notes to when I get lab results back, and all of my messages are filtered through his "nurse navigator" who I call Nurse Ratchet, because I never really know if the doctor sees my messages or not.

And for what it is worth, I recently had a sinus infection, but it returned with a vengeance, and when I messaged my doctor on Friday about the possibility of another antibiotic, he refused, and instead said he wanted me to have a CT scan of my sinuses. My response was, "seriously?" Today I had a temperature, more sinus pain worse than before, so called Teledoc and got my antibiotic. Go figure. Even the Teledoc doctor was astonished that my PCP would not prescribe something based upon my symptoms.

Again, I am sorry you are suffering and I hope I have helped somewhat by giving you some ideas. I too have insomnia, and really got up to finish an art project, but decided to check this site for any notifications because they always make me feel less alone.

Take care and good luck on your medical journey.

Sorry for your debilitating health conditions. My cousin got many of the same symptoms from mold in her house. Her dryer vent in the attic was the cause and hidden from view in the walls. It spread throughout the house and she finally got mold specialists to remove it. So many symptoms, seems like it is environmental toxicity. I am not an expert or anything . Just thought it might be worth mentioning.

I am so very sorry you are suffering so badly. I wish I could help but I am just another soul on this earth who is suffering also.

Hi morganjane,

Saddened and troublef by your post this morning.

I know you said you don't have a lot of resources, but can you make a trip to another facility with a friend? I know it is hard but I would try to make this happen.

There ARE good and caring doctors out there. You have not found the right place but please, please.....keep trying until someone listens.

Cindy

Premature menopause caused by long-term stress and possibly chemical exposure at work.

Insurance has ruined the medical profession. You are all right. It is not the same. I can remember when a visit with the doctor meant you took off all your clothes, put on a skimpy gown and lay down on one of those bed things. I had a wonderful doctor then. He came in and started at the top of my head and examined every part of my body to the soles of my feet. No, it is not pleasant to have someone's hand up your vagina, but he was able to feel all my "inside" organs and knew if anything was not as it should be. This does not happen any more. They just look at the computer and you are lucky if he even listens to your heart. My cousin's husband was a doctor who taught at a prestigious university. He told her that they were no longer getting the best and brightest students. They were going elsewhere. And in medicine, as in all things, someone has to graduate last. Is this all this country is capable of?

@morganjane There are a couple of things that come to mind. In your history are there bodily injuries (such as a whiplash?) or exposure to foreign materials in your body, perhaps extensive dental work? I ask because surgical implants are made of foreign materials and root canals contain toxic substances and I've been down that road myself and I know that removing my old toxic dental work improved my health a lot. I had also fractured my ankle recently, and the titanium fixation plates were causing pain and hives. I had them removed and my health and asthma improved. Are you exposed to mold where you live or work? That can cause health issues. Do you spend time outdoors? Some of your symptoms are common with Lyme disease and the many co-infections that are associated with a tick bite. Tick bites don't always cause the expected "bullseye" rash and a bite can easily be missed. Did you ever have a high fever that was unexplained?

I have had thyroid nodules for years, and had Hashimoto's thyroiditis which is an autoimmune thyroid condition. That was likely caused by the 50 year old silver amalgam dental fillings according to my environmental medicine doctor. My blood work was off the charts for the antibodies against my thyroid, and now after several years and after removing all the metals from my body, my blood work is now in normal range and no longer indicates Hashimoto's. The thyroid is very sensitive to toxic substances. Not everyone reacts to metal surgical plates, but I also became allergic to metals in pierced earrings no matter what I tried. I did also notice your tattoos, and tattoo ink has been written about in medical literature for toxicity.

Mainstream medicine may not look for a cause for these kinds of things. I found that my functional medicine and environmental medicine doctors were helpful for this, and they also optimize female hormones. There can be different reasons for thyroid nodules. I had multiple nodules associated with Hashimoto's and over time they shrank as I got better. My doctor said a single nodule is more of a concern for a suspected cancer. I did have a needle biopsy of the largest nodule which is a simple procedure and cancer was ruled out. I think it was an ear nose throat doctor who performed the procedure. An environmental medicine doctor can also advise the patient to see other specialists and recommend what specialties would be considered.

Here are some links with information about environmental medicine and Lyme disease. Lyme is misunderstood and it is hard to find a specialist who understands how to cure it if it is chronic.

In this discussion, "Lyme Disease and Neuropathy", you'll find a discussion and this comment has some specific information:
https://connect.mayoclinic.org/comment/237077/
Environmental Medicine
They can be allergy specialists and look at the functional chemistry in the body and optimize health. Here is a provider finder.
https://www.aaemonline.org/find-a-practitioner/
I have a current doctor who is also an allergy specialist in functional medicine who is in the Forum Health Group https://forumhealth.com/ They have doctors nationwide.

Typically these doctors look for a cause of a problem instead of prescribing something to treat an effect or symptoms of a problem. They may not be able to address all of your issues, but they may be able to help with some of it that is allergy or immune related.

There is also the practice that started this field of medicine. That is the Environmental Medicine Center Dallas in Texas. Here is there website. https://www.ehcd.com/ There is information at this website about issues they can treat.

Mold Toxcity
https://www.ehcd.com/mold-and-health
Perhaps some of these other avenues could help lead to an answer for you. It will likely take some time, perhaps years to trace the issues and find the source. You'll have to advocate for yourself. I didn't have answers for years on some of my issues, but it was worth it to keep searching. I have lots of seasonal allergies as well as sensitivities to chemicals, fragrances, and I react to mold exposure with asthma. I learned a lot of this just in my experience of what worked and how my health was improved. Even though my thyroid is better now, I still need to take thyroid medication because damage was done and my thyroid can't produce enough of what my body needs. My functional medicine doctor looks at thyroid function differently than a main stream medicine doctor who tends to look at "average" blood readings based on entire populations where many people in that average have thyroid hormone levels that are low.

Wow, thank you for all of your suggestions. I wasn’t expecting anyone to respond to be honest. To answer some of your questions, I did have 2 root canals I think within about a year of the onset. I do recall around that time I also had an abscessed tooth that I had to get surgically removed. Oh & I’ve got a metal filling that I’ve had for maybe 20 years or so. I do remember watching that documentary called “Root Cause” or something like that & I was shocked to say the least. Definitely something I need to read up on.

I was tested for Lyme which came back negative but I can’t remember the last time I was outside where I could have gotten bit, so I didn’t think it’d be that anyways.

Since I work from home now, I’m here 24/7 & to be honest I have no idea if there’s mold. I’m not quite sure how I’d go about checking in to that but it’s not a bad idea. I live in an apartment complex that was built maybe…10 years ago? Idk.

I’ve seen a rheumatologist & the guy was probably one of the most unprofessional doctors I’ve come across. I had been referred there by my PCP (by my request) & there’s no intake paperwork, I get in there & he has no file or anything on me, & he asks why I’m there & if I’ve had any bloodwork done….he couldn’t even bother to look at the referral with my paperwork & labs…I tried explaining it all to him & he literally doesn’t touch me or anything, just immediately asks “have you heard of Fibromyalgia?”….. I was so mad because he didn’t even attempt to dig a little deeper or order additional tests, he just said my labs sound fine & there’s nothing he can do for me. The labs I had done were just your basic complete panel that you get done yearly. So the rheumatologist was a bust & I won’t be going back to that dude again.

Since day one I’ve really felt it has to do with either my thyroid or some sort of autoimmune disease. My father has hypothyroidism. But when the labs are normal, a lot of doctors don’t want to order more specific tests for thyroid like TPO or whatever else there might be. Like….why not just do it to humor me? It’s not going to hurt them in any way.

I truly don’t feel like what I have is anything super rare, I think we just don’t have competent doctors here & I hate to say that but I’ve had repeated bad experiences. I get it, they probably see a LOT of patients who are actually hypochondriacs. I know that has to be incredibly annoying. But being dismissive to each person who presents with a condition that isn’t your run of the mill common ailment, can be detrimental to one patient like myself with a legit health concern.

It’s just frustrating & it can be daunting trying to find help when you’re so limited on funds & living in a state with no resources. I’d LOVE to go to Mayo or Vanderbilt or UDN but it’s just not feasible. To add to my pity party, it doesn’t help that I live alone, I’m single with no kids, no family that I speak to, & no close friends anymore.

I just wish I had access to more caring doctors. It breaks my heart that the people we go to when we are at our worst, who we depend on to have our best interest at heart & to hopefully help us get better, have been the people with the least amount of compassion. I know there are still good caring doctors & nurses out there, they’re just more of a rarity now.

That’s the end of my little rant. Thank you again so much for all of your help. You’ve given me more avenues to explore which is great. 🖤

I’m wondering about autoimmune diseases? I think 🤔 mold exposure to. Keep pushing forward, don’t give up. It’s sad when you feel so sick and you feel yourself getting worse. The medical system is hard to navigate, it seems like no one really has time or willingness to listen to the whole story.

I am so sorry to read about you situation. I have encountered some of the same reactions from 1 doctor so far. Others are just perplexed, but do try to help me. Most of my doctors practice at a very large, world renown teaching hospital. So I am fortunate. Still…they are stumped on a lot of this.

I can just say what I have experienced. One of my doctors diagnosed me with Post Covid Syndrome. I had most the symptoms, though a mild case, but my one test came back negative. He said it doesn’t matter. Still probably had it. Afterwards, my symptoms started, including smell and taste disorder, which sounds small, but is HUGE. They are currently my biggest concerns. It’s unreal how taste and smell can impact your life. I actually feel really good! It’s just the symptoms that won’t leave me alone! It’s as if my body is at war after being attacked.

I have many, but not all of the symptoms you list. Most of my tests are normal. Like blood, EMG, MRI, etc.

I do have longterm T1 diabetes and hypothyroidism. I have an appointment with a rheumatologist for evaluation of Sjogren’s. It can cause many problems in the body.

Have you been tested for Lyme disease and heavy metal poisoning? Also, vitamin deficiency?

My neurologist prescribed me antidepressant med for anxiety and depression. I may try it. I’m in talk therapy. It helps a lot! That is important imo, because it provides a place to share and get supportive feedback.

My next step is to explore a Functional Disorder specialist and/or Post Covid Syndrome center.

Acupuncture and physical therapy have helped me tremendously and have brought my only relief from pain symptoms. I hope you can find some help. Please post what you find out. So many are searching for answers.

Don’t lose hope! There is always hope! Keep in mind, there are better days ahead.