Any thoughts?

Hello @hopefulhealing and welcome to Mayo Clinic Connect.

You are an excellent historian with your health history and that is important given the kind of problems you have experienced throughout your lifetime. You do not mention your age but you certainly are dealing with many different problems, some of which you said might be genetic in origin. I'm just wondering if any of your doctors have recommended any genetic testing? If not, this might be something you could ask your doctor about. You mentioned the possibility of having an endoscopic ultrasound (EUS) which sounds like a good idea given many of your symptoms.

Is there any family history of these types of problems? Have you been seen by a rheumatologist who can look for auto-immune disorders?

I would like to invite some other members to this conversation including @astaingegerdm, @becsbuddy and @gingerw. Perhaps they can offer some other suggestions.

@hopefulhealing, what is your most difficult symptom right now?

I am intersex, and like almost all people with intersex syndromes, I have my share of problems. Not as many as you have, but enough for my taste.
I did not find comprehensive help for any of them, until I went to the Mayo Clinic in Minnesota, where I was turned inside out, and upside down.
I cannot be healed, because my body is pretty screwed up, but my problems are dealt with, and I can live a normal, almost pain free life.
I live in southern Florida, but travel annually to Minnesota to be treated by the docs at the Mayo. In between I see them via Zoom.

You might want to see if you can have the Mayo docs will treat you, too?

Thank you for your response. I am a 38 year old female. Most difficult symptoms right now is the extreme exhaustion, the weight that won't come off (so uncomfortable especially when bending over-hard to breath), the weird vision issues with anxious feelings, and the low sugar issues.
I went to a rheumatologist years ago and that was who "diagnosed" me with dysautonomia.

Thanks for reaching out @lindes. I am sorry you have been struggling, but I am happy to hear that someone has been able to help. What is the best way to get help from Mayo?

Gee, @hopefulhealing , you certainly have a lot going on! But how frustrating to not get any answers. Many members have come to Connect with the same dilemma, so know that you are not alone. Ive included a link to a discussion in the Autoimmune group that is somewhat similar to yours:
https://connect.mayoclinic.org/discussion/at-a-loss-multiple-consultations-still-no-answer-any-idea/
Maybe @change25 could join the discussion and tell you about his journey
Have you tried any doctors at a large medical center or university teaching hospital in your area? The doctors there are more accustomed to putting vague symptoms together and coming up with answers. You can try Googling “medical centers of excellence” in your state.
I hope you have some success. Will you let me know what you learn?

Hey Becky, I'm more than happy to share my thoughts if it helps in any way.

It's awful and frightening when you are experiencing multiple symptoms with no known cause. @hopefulhealing you've done a wonderful job of monitoring and tracking your health. Have you been with the same medical team or switched at any point?

Where I went wrong initially was presenting with too many symptoms at once where the Dr was overwhelmed and it definitely slowed my progress. It wasn't until I recieved guidance from those such as Becky where I could narrow my symptoms down to 2 or 3 key issues which drastically improved the service I recieved.

Your "IBS" diagnosis definitely needs to be looked into further. If you haven't already I'd make sure IBD has been ruled out as that can cause sinus issues along with fatigue and other issues you are suffering with. Then I'd probably see a Gynaecologist to see if they can shed a light on the other concerns you have.

You're in good hands, it's a fantastic forum with wonderful members so take everything they say on board and I wish you all the best in your journey and health.

@becsbuddy thank you for your response. I went to a Reproductive endocrinologist at Johns Hopkins but they basically told me all the same things as my fertility doctor. I am trying to figure out how to get involved with a program that would be open to running numerous tests and think outside the box. I guess I was hopeful the Hopkins doctor would dig a bit more and be the one to finally help, but was not open to trying anything else or digging any deeper.

@change25 I hope you are feeling better! Thanks for taking time to connect. I have seen some many doctors off all kinds and I guess I just wish I was able to find someone or someplace to just get a work up from a team. Instead it is one doctor I work with for months....nothing. I get referred to another type of doctor....months...nothing.
I'm appreciative of the comments being made and maybe this will help point me in the right direction.

@hopefulhealing I’m sorry that things aren’t working out yet. Just be persistent in your search. Did you look for a regional medical? Any luck? Try to see a rheumatologist with cross-training in autoimmune diseases.
Also, pare your list of symptoms down to those bothering you the most and try grouping them together. Do most of them fit into a category, like heart or skin or reproductive? This will make it easier for the doctor
All of this can take awhile, but it is worth it in the end
Keep me posted!

Absolutely, it is an extremely frustrating process. The medical world are generally brilliant - though when it comes to something rare or different diagnosis takes far too long in my opinion and this needs to change.

You are being a good advocate for yourself and are doing the right thing by getting involved in forums such as this. Google is also helpful as you can stumble on people with similar symptoms to you. Where it can give you an insight as to what you may have.

As I mentioned previously I would investigate your IBS diagnosis further, unless they have categorically stated it is that. That may get the ball rolling as I thought I had IBS when in fact i have IBD. The Dr was lazy at the time and assumed that because of my age I was too young.

I really hope you get some answers soon, all the best.