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mary1121
@mary1121

Posts: 9
Joined: Aug 11, 2018

Multiple autoimmune diseases

Posted by @mary1121, Fri, Aug 10 11:39pm

I have just been diagnosed with my 6th autoimmune disease. I am in a panic state. MS, Celiac,hypothyroidism, fibromyalgia and lupus. I want to get in with a functional doctor, but all of the ones that I have talked to cost between $10,000-15,000 upfront. I don’t know where to turn.

REPLY

Hello @mary1121 — I see that you are new to Connect and I would like to Welcome you. I know it can be distressing not knowing all the answers and what to do. I can tell you that you are not alone. It's good that you are looking for information and asking questions. That means you have a strong desire to learn more about your health and will help you be a better advocate for yourself.

I thought you might find the following TED Talk helpful.
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Liked by Dee, beryl, toomanyoars

Why so much up front

That’s how much they charge for the 20 week program, they just require it upfront.

@johnbishop

Hello @mary1121 — I see that you are new to Connect and I would like to Welcome you. I know it can be distressing not knowing all the answers and what to do. I can tell you that you are not alone. It's good that you are looking for information and asking questions. That means you have a strong desire to learn more about your health and will help you be a better advocate for yourself.

I thought you might find the following TED Talk helpful.
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Jump to this post

I do not remember if I have asked this question before but: Does the Mayo Clinic have opthamalogists who work ???with problems like going blind?

@johnbishop

Hello @mary1121 — I see that you are new to Connect and I would like to Welcome you. I know it can be distressing not knowing all the answers and what to do. I can tell you that you are not alone. It's good that you are looking for information and asking questions. That means you have a strong desire to learn more about your health and will help you be a better advocate for yourself.

I thought you might find the following TED Talk helpful.
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Jump to this post

Hi Peach @peach414144 — Mayo Clinic does have an opthamology department.

https://www.mayoclinic.org/departments-centers/ophthalmology/overview

John

John, thanks for the ophthalmology input. I posted asking about VKH disease some time ago but no one else seemed to have it. Will look into AZ Mayo.

Some doctors who practice function medicine are covered by insurance. Do a search at this site for doctors in your area, and then call and ask about insurance. I found one who works within the Allina network and my insurance covers visits with him. https://www.ifm.org/

I think you're right to look into Functional Medicine, but something seems very wrong with a place that would charge so much money. There are some out there who are only looking for profit.

@johnbishop

Hello @mary1121 — I see that you are new to Connect and I would like to Welcome you. I know it can be distressing not knowing all the answers and what to do. I can tell you that you are not alone. It's good that you are looking for information and asking questions. That means you have a strong desire to learn more about your health and will help you be a better advocate for yourself.

I thought you might find the following TED Talk helpful.
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Jump to this post

Is there a specific area to call? I have Hashimoto's Disease, idiopathic membranous glumerlonephritis, osteoporosis, high cholesterol, and gastroparesis.

@suemer

Is there a specific area to call? I have Hashimoto's Disease, idiopathic membranous glumerlonephritis, osteoporosis, high cholesterol, and gastroparesis.

Jump to this post

Hello @suemer, I think when you call the Mayo Clinic location that you want to go for an appointment, they will help you determine which area the initial appointment is with. Then all of the areas work together to diagnose your health issues and come up with a treatment plan. More information can be found on their frequently asked questions for appointments page on the website:

Appointments at Mayo Clinic — Frequently Asked Questions
https://www.mayoclinic.org/appointments/faq

John

@johnbishop

Hello @mary1121 — I see that you are new to Connect and I would like to Welcome you. I know it can be distressing not knowing all the answers and what to do. I can tell you that you are not alone. It's good that you are looking for information and asking questions. That means you have a strong desire to learn more about your health and will help you be a better advocate for yourself.

I thought you might find the following TED Talk helpful.
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Jump to this post

Hello all this is Beryl …..I was sitting here reading some of the posts and realized that it makes such a difference to see that there are lots of people in the same boat and worse…..I always felt a bit of a freak as people round you really don't know what the dickens is wrong with you …..I used to find myself floundering and making excuses for myself so it didn't feel so bad ……Now I don't Mayo Connect has given me confidence …..thank you guys for sharing and unfreaking me…..ha ha ……

@beryl

Hello all this is Beryl …..I was sitting here reading some of the posts and realized that it makes such a difference to see that there are lots of people in the same boat and worse…..I always felt a bit of a freak as people round you really don't know what the dickens is wrong with you …..I used to find myself floundering and making excuses for myself so it didn't feel so bad ……Now I don't Mayo Connect has given me confidence …..thank you guys for sharing and unfreaking me…..ha ha ……

Jump to this post

I can really relate to that Beryl @beryl !!

Liked by lioness

Thanks John ……hope you are not doing too much in the garden!! Beryl

@beryl

Hello all this is Beryl …..I was sitting here reading some of the posts and realized that it makes such a difference to see that there are lots of people in the same boat and worse…..I always felt a bit of a freak as people round you really don't know what the dickens is wrong with you …..I used to find myself floundering and making excuses for myself so it didn't feel so bad ……Now I don't Mayo Connect has given me confidence …..thank you guys for sharing and unfreaking me…..ha ha ……

Jump to this post

@beryl we are all in the same ⛵ but we all need to keep rowing LOL

@lioness

@beryl we are all in the same ⛵ but we all need to keep rowing LOL

Jump to this post

Yes Lioness I am doing my best….Beryl

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