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@colleenyoung

@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/

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Replies to "@sallylynn, I hear you. This must be very frustrating for you and I hope you will..."

@colleenyoung
All fantastic helpful tips I have used over and over again. I am not a doctor, but I certainly have a lot of experience in trying to find answers for myself and for many of my patients that I see in my practice.

I would like to share a few things I have learned. No one can advocate better for us than ourselves. We can either sit and feel sorry for ourselves or we can get up and do something about it. I am one of those people that never fit into a textbook. 😊 My doctor says I have a habit of challenging medical journals and helping him write addendums to them . I learned a very, very hard way that if I want to get answers and I want something to change that I have to do something about it and being prepared is the best way to start. I still keep a notebook by my nightstand and even in the middle of the night when I can't sleep, I write down questions I think of. I Keep a journal and take that journal to doctor's appointments. I keep a journal for blood pressures, glucose, symptom log and a food diary. Those journals helped me help my healthcare team find the answers. A turning point for me was to stop thinking of my doctors as my doctors. I started telling myself we are a healthcare team and a team must work together. I can't expect my doctors to get answers if I'm not willing to share valuable information. Once I started looking at them as team members and we were all on the same side trying to reach the same goal, we started to unravel the diagnosis.
Thank you
Dawn

Thank you so much for your response.
To your question #1. Yes, I have symptoms and no diagnosis.
To question #2. Yes. Have been to ER July 28, August 24, Sept. 30. They did run blood work/Standard Urine sampling. Yes, I expressed my symptoms in detail & how long I have had them. They are going on standard blood tests.
Question #3. No, I have not seen any specialist's, only my DO at my clinic. DO put in referral for Neurology. They are still "Triaging" my case. I was told it could be 4 months or longer before I get an appt. They will call.
Question #4. Yes. Some tests are normal, and some slightly out of range. I intentionally question every single number out of range and ask why and IF they are concerned. The answer has been, "Not concerned". I go through my labs with a fine tooth comb.
Question #5. Yes. I have turned to "The internet of things" for my answers. I feel I have no choice.
Question #6. Yes. I am scared, confused, I am convinced I do have MM, which I told my Doctor in my appt. She said "You do not have MM, how can I help you to get that out of your mind?" I was stunned she told me this with NO required tests to deny or confirm MGUS, SMM, or MM. This scared me because this proves she knows NOTHING about MM. I desperately want a better Doctor, but I am stuck as of now. Jan. I see a new doctor and different clinic.
Yes, you have it right. In reel time this is how it is. I feel I am in a living hell. I feel like absolute shi*t and the Medical people do not give a damn. ~