I want to say that my mom went through YEARS of hospital visits and testing and even had failures getting a correct DX from both the Cleveland Clinic and Mayo Clinic. We were told she had a brain tumor (she doesn't) but they did discover an AVM www.mayoclinic.org/diseases-conditions/brain-avm/home/ovc-20129992, that has nothing to do with her condition.
TMI: She vomits every few weeks. Still does. What it is, is a twist in her bowel caused by scar tissue from localized radiation (uterine cancer) or a back surgery where they think the surgeon may have nicked her bowel. It is never stabilized long enough to see it. We rushed her to the hospital when a episode first started and they finally found it, after seven years of hospital stays and tests. They won't do surgery because of her age and the fact the it is not life threatening, only miserable.
All this to say, don't give up. Journal, advocate for yourself, keep pushing. I wish you the best.
I am so sorry you are going through this. Getting no answers and feeling like you're being ignored/dismissed is the worst.
Have you talked to a psychiatrist? I wonder if they would be willing to be your ally that this is not traditional anxiety, but appears to be a physical health problem, and maybe they could suggest another doctor/specialist?
This is actually a really good idea! My PCP and counselor talk when planning treatments sometimes. It really helped to have them on the same page with certain things. Ex I know I'm overweight right now, but I'm terrified that any kind of dieting will throw me back into bad unhealthy old patterns, so we are working on a plan for me to work with a nutritionist instead of a standard diet protocol. It also helps with stuff like when I was having issues with my digestive issues last year and was getting depressed from being constantly ill, not socializing because I was sick/did want to suddenly be sick while out, etc. It makes a big difference when the doc knows she's depressed because she's sick, not sick because she's depressed. Hugs.
Keep a diary. You also have to start telling doctors what you want, be honest with them, tell them you want whatever test imaginable to figure out this issue.
It took me six or seven years to get a lupus diagnosis. I first started having symptoms when I was 17. About 1/2 my hair fell out in one month. I kept it in a bun because it would gather all over my clothes and I was afraid to do anything with it. I had a doctor ask me to take my hair down and then proceeded to tell me that maybe if I'd get it cut or something it would look better and start growing. I had another doctor tell me that my muscle weakness and inability to get myself out of bed easily was probably because I didn't exercise enough and my muscles were weak. I had another tell me it was stress and gave me a script for Xanax.
Doctors can be assholes, not all of them became doctors because they have a deep desire to help people. You have to weed out the ones who just want a paycheck and that unfortunately can take quite a while. Don't give up now, and when they treat you like shit you just have to walk out with your head up.
I also agree with the celiac or gluten intolerant posts. I thought that immediately when I read your posts. I have strange symptoms like eye pain, ear pain, headaches and bloating when I eat it but tested normal. I cut it out on my own and feel so much better. Maybe do a Whole 30 and then add things back in one by one. I think I have an egg intolerance as well after doing that, and it is easier to see connections than a food diary. Good luck!
I also have a history of anxiety, but it hasn't been a problem for upwards of 20 years. Any time I'd see a doctor, they'd immediately tell me that my GI issues were anxiety. One doctor checked me up and down, was obviously puzzled, and started grasping not at straws. She found my history of anxiety and said "I knew it. You just look like a nervous nelly. You need to relax, stop drinking lattes, and try some yoga." Bitch please. I believe my celiac diagnosis and multiple good allergies would say that it's not just being a "nervous nelly." And you know what? Being sick and dismissed by people who are supposed to care for you MAKES ANYONE ANXIOUS.
Ummmmm, I *may* have. Why? Did you hear something that sounds familiar and want to *reply* to it?
You should have seen me having my aha moment on the train today, lol. You sounded great!
I'm glad you're feeling better!
Thanks! I hate the sound of my own voice and I made a lot of grammar mistakes. It's hours of interviews edited down and I am embarrassed of all my umms and "likes" but hey, I did the best I could - there were some emotional moments during the interview and I was also nervous.
kwynn Do you have any updates that you can share? I really do help that you are feeling better and found a doctor that listened to your concerns.
I will gladly update!
Long long story short - physical therapy took away the headache. A chiropractor (I was previously very skeptical) took away the other weird symptoms - dizziness, twitching, etc.
I *still* get headaches and symptoms if I don't go to the chiropractor or don't spend enough time lying down - like if I get a short night of sleep, I am more affected. But I am fully functional now and have been at at least 70% since May and 100% since August as long as I stay on top of it.
Possible diagnoses are SCM muscle problem or atlas/vertebrae out of place, or maybe a combo of being out of alignment and then the muscle pulling. I believe - my theory - that I have a pinched nerve and my artery is being pressed on by muscle/bone when I am upright and it eases off when I am laying down.
However, as a result of my involvement with the podcast, I am getting an angiogram on my carotid artery to make sure I don't have a dissection. I doubt the test will show anything - since my problem is when upright and the tests are done while lying down.
Sooo - it is open-ended. Podcast should be updated when they know more.
The podcast is called "Reply All." And don't judge me too harshly for it - I was emotional about things that were brought up, especially my late husband's passing and I was also nervous. There are a ton of grammar mistakes too which I am kicking myself for.
This is the weirdest thing... My DH was just telling me last night at dinner about this excellent episode of a podcast he listens to that reminded him of Dr House and the story sounded oddly familiar. Now I know why! I'm glad you're finally getting the treatment you need, it is so ridiculous that it can be so hard to get a Dr to take you seriously.
Omg I listen to podcasts to help me sleep and I was like kwynn should hear this woman!!! and woke up to reply to this post.
Please don't judge yourself so harshly! You sounded bright and articulate and painted such a clear picture of your suffering. It truly sounded like a nightmare. I'm a big fan of traditional medicine, but it's evidenced-based so if there's nothing a doctor can see, hear, or feel, you're shit out of luck, which sucks. I'm so glad that you're feeling better.