Ive been to passive with my dr's I believe.

Posted by maui6698 @maui6698, Dec 10, 2019

Hello all and Happy Holidays! I could use some input. I have been to so many dr’s trying to find out why I’ve been feeling lousy since the 1st of the year. I have a whole list of symptoms, that no one can pinpoint besides my auto immune diseases. But those do not address concerning symptoms. Can you please help me with if you had anything similar. I keep thinking that it could be something else, but dr’s just aren’t getting me answers. I have a ct scan this week on a swollen spot on my left collar bone this week as well so nervous for that. I’m itchy all the time, nothing can stop the itch, I do not have a rash but just random spots on my body will itch like crazy. I have night sweats, loss of appetite, my skin is pale and looks odd I can see my veins so easily now. I'm losing hair, I’m be beyond exhausted. I cant get my vit. d levels up, my b12 is super low. i looked at my blood levels last year and everything was in order. this year everything has gone sideways… I am to the point where I want to be more aggressive with my questions, and not let the drs lead the way. Do you have any suggestions?

Hello @maui6698

I can certainly understand your concern about your many symptoms. They certainly sound bothersome and they would be concerning. Many of us on Connect have had similar situations where our symptoms don't seem to fit the diagnosis that we are given and many of us struggle with finding good diagnostic answers as well as treatments.

If you have a multi-disciplinary medical center nearby, such as a university medical school or a Mayo facility, that might be a good place to go for a second opinion. These medical centers are different than your local doctors/hospitals in that they are usually involved in research as well as treatments and have a number of people on their staff who can often put the pieces together of hard-to-diagnose problems.

You mention having autoimmune diagnoses. If you are comfortable sharing more, what are those disorders?

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@hopeful33250

Hello @maui6698

I can certainly understand your concern about your many symptoms. They certainly sound bothersome and they would be concerning. Many of us on Connect have had similar situations where our symptoms don't seem to fit the diagnosis that we are given and many of us struggle with finding good diagnostic answers as well as treatments.

If you have a multi-disciplinary medical center nearby, such as a university medical school or a Mayo facility, that might be a good place to go for a second opinion. These medical centers are different than your local doctors/hospitals in that they are usually involved in research as well as treatments and have a number of people on their staff who can often put the pieces together of hard-to-diagnose problems.

You mention having autoimmune diagnoses. If you are comfortable sharing more, what are those disorders?

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no i don't mind at all, spondlorapathy, sjogrens, fibromyalgia and hashimotos.

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@maui6698

You do have a lot of autoimmune disorders. I would encourage you to look at our Autoimmune discussion groups. Here is the link, https://connect.mayoclinic.org/group/autoimmune-diseases/. Perhaps by reading these discussions, you can learn a bit more about your health.

Have you considered a second opinion at a multidisciplinary medical center?

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@hopeful33250

@maui6698

You do have a lot of autoimmune disorders. I would encourage you to look at our Autoimmune discussion groups. Here is the link, https://connect.mayoclinic.org/group/autoimmune-diseases/. Perhaps by reading these discussions, you can learn a bit more about your health.

Have you considered a second opinion at a multidisciplinary medical center?

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i have not, were would i find one at?

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@maui6698

i have not, were would i find one at?

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Hello @maui6698
I do not know where you live, however, if you live near a Mayo facility (Minnesota, Arizona or Florida) that would be one way to get a good second opinion. As an alternative, a university medical center is also good. It is important to go someplace that is research-oriented.
A research-oriented, multidisciplinary medical center is important because of all of the different symptoms you have. These types of medical centers often have doctors who can put all of the puzzle pieces together and come up with a correct diagnosis and treatment plan.

I would like to hear from you again. Will you let me know how you are doing?

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To @maui6698 and others who are seeking a second opinion and anticipate a consult with a new specialist. It might be helpful for you to read a discussion on Connect about how to approach an appointment with a new specialist. Here is a link to this discussion, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765.

As an appointment with a new doctor can be anxiety-producing these tips on how to prepare for the appointment and also how to approach a new doctor are really quite helpful.

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@hopeful33250

Hello @maui6698
I do not know where you live, however, if you live near a Mayo facility (Minnesota, Arizona or Florida) that would be one way to get a good second opinion. As an alternative, a university medical center is also good. It is important to go someplace that is research-oriented.
A research-oriented, multidisciplinary medical center is important because of all of the different symptoms you have. These types of medical centers often have doctors who can put all of the puzzle pieces together and come up with a correct diagnosis and treatment plan.

I would like to hear from you again. Will you let me know how you are doing?

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I actually tried to get an apt with mayo and was denied 🙁 i really wanted to know what was going on, I've been so so many doctors, and they keep saying that they don't see anything besides the issues i know about. and i know in my gut something else is wrong. i didn't feel this awful this time last year. its like a switch was flipped and i feel just lousy

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Hello @maui6698,
If you are not able to get into Mayo have you checked with a university medical center in your area? Often they are more researched-oriented and can assist in the understanding of complex symptoms.

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