@sallylynn, I hear you. This must be very frustrating for you and I hope you will be able to put into action some of the helpful tips members are sharing with you.

Let me see if I can summarize in brief (overly brief I realize) your situation (as I understand it) in order to help move things forward. I want to help you get out of this terrible vortex of not getting the help you need.

1. You are experiencing symptoms that require attention. As of yet, you do not have a diagnosis.
2. You have reported to ER with symptoms that were alarming, but received no diagnosis.
3. You have seen a number of physicians in different specialties and many tests have been ordered.
4. Tests have shown normal levels and some tests showed values slightly out of range of normal. However, tests ordered thus far have not clearly indicated a diagnosis.
5. Without answers, but still experiencing symptoms, you have turned to the Internet to find clues and hoping to find answers that doctors have not yet found.
6. Today, you continue to seek answers. Your frustration with the medical system continues to increase and finding a place that takes new patients to get a second opinion is near impossible.

I realize that this is over simiplified, but do I have that right so far?

It is terrible to feel blown off by medical professionals. I wish that you didn't feel that way.
I know that some doctors have chalked your symptoms up to anxiety. I bet it can look like that to them. Sometimes we get so frantic without answers that frustration, anger, and yes anxiety too, get balled up into one big mess. I get it. That doesn't give any professional the right to dismiss your concerns as anxiety. And if they suspect anxiety, then that should also be addressed. Never dismissed.

There are many many doctors that care and want to help.

Good for you for finding a new clinic and getting an appointment. It's frustrating that you have to wait until January. But you have an appointment! That's a great start.

What can you do between now and your appointment to prepare for your appointment? How can you be the best partner you can be to work as a team with the new specialist?

I hope members will join me in sharing their tips to help you develop a plan, get a diagnosis, and get your life back again.

Here are my tips:
1. Start a journal and make note of your symptoms:
- Describe the symptom
- How severe is it? Grade it as a 1, 2, or 3
- When does it happen?
- What were you doing when it happened? Note possible triggers
- How long did it last?

2. Prepare a list of questions
Keep a pad a paper or your phone near your bed and favorite sitting place. Questions come up in the stangest of places.
Shortly before your appointment, organize your list into categories. Prioritize 1 to 3 items that you need to have addressed. There may not be time for all the questions. Or some may be answered during the appointment.

3. Find a family member or friend to accompany you
It can help to have another set of ears to remember what the doctor said. Or even to ask your questions should you be overwhelmed or forget to ask. Of they may think of questions during the appointment.

Here is a fantastic discussion where members have shared more tips. As you'll discover, I kinda stole the best tips and shared them with you. 🙂 Cuz, like you, I learn a lot from fellow patients.

– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/