1. < Autoimmune Diseases

At a loss, multiple consultations still no answer...any idea?

Posted by change25 @change25, Apr 24, 2021

In the last year my health has rapidly declined, I've recently had a blood test which was normal except for my folate which was low. My Dr conducted an examination, but was unable to properly diagnose me.

Any idea what it may be from these symptoms:
*Pulsating headache, difficulty focusing.
*Weak eyes where they feel droopy along with being dry and painful.
*Dry and sore mouth.
*cheek and jaw pain.
*Changes in pigmentation, face appears gaunt.
*Back pain.
*Odd tingling sensation present in hands and feet.
*cold hands along with an odd rash present on hands and knuckles, which is a deep purple.

I know something isn't right, yet I'm unable to obtain the answers I need. I've added some images before the changes occurred to now so that you can get a context into what's occurred. Any insight will be greatly appreciated, many thanks.

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athenalee | @athenalee | May 24, 2021
In reply to @change25 "Thank you for your kind words as always Elizabeth. The problem is that at this current..." + (show)
@change25

Thank you for your kind words as always Elizabeth.

The problem is that at this current moment they have no idea what the problem is so they can't prescribe me anything.

I have no idea. All I know is that my Dr sent off my current medical files along with a number of photos of my face from before to now. It's a fairly large facility, but it isn't a teaching hospital.

It's bizarre, I've had no facial pain but the atrophy has continued. That's why I removed all mirrors as it was getting too much. It's just a waiting game now, thankfully covid isn't what it. However, the backlog is fairly substantial so who knows when I'll be seen.

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Please try to remain positive! I know how frustrating it is not getting answers and waiting endlessly to get seen by a specialist. I’ve found it helpful to keep writing all my doctors, primary and specialists, through the hospital portals. Continuing to remind them your symptoms are getting worse, you need answers, what are the next steps, etc.

If you can, I also sent my symptoms and lab results off to research labs that dealt with autoimmune diseases and asked them what they thought, since I wasn’t getting the attention I needed. I did get a response. I think you said your labs didn’t reveal anything, but with your symptoms you still may be able to research possible diagnosis. I know “Google doctor” doesn’t offer solutions, but it has helped me to research what may be going on.

My best wishes for you to find the help you deserve soon!

REPLY
1 reply
change25 | @change25 | May 24, 2021
In reply to @athenalee "Please try to remain positive! I know how frustrating it is not getting answers and waiting..." + (show)
@athenalee

Please try to remain positive! I know how frustrating it is not getting answers and waiting endlessly to get seen by a specialist. I’ve found it helpful to keep writing all my doctors, primary and specialists, through the hospital portals. Continuing to remind them your symptoms are getting worse, you need answers, what are the next steps, etc.

If you can, I also sent my symptoms and lab results off to research labs that dealt with autoimmune diseases and asked them what they thought, since I wasn’t getting the attention I needed. I did get a response. I think you said your labs didn’t reveal anything, but with your symptoms you still may be able to research possible diagnosis. I know “Google doctor” doesn’t offer solutions, but it has helped me to research what may be going on.

My best wishes for you to find the help you deserve soon!

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Good points, thank you. I've just emailed mayo clinic to get an idea of what the cost may be. It's looking like that will be my next port of call as long as it isn't too expensive. I'll see what I can do with the lab work, there's a decent facility not too far from me that offers more specialised tests.

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1 reply
ess77 - Elizabeth | @ess77 | May 24, 2021
In reply to @change25 "Good points, thank you. I've just emailed mayo clinic to get an idea of what the..." + (show)
@change25

Good points, thank you. I've just emailed mayo clinic to get an idea of what the cost may be. It's looking like that will be my next port of call as long as it isn't too expensive. I'll see what I can do with the lab work, there's a decent facility not too far from me that offers more specialised tests.

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Hello, our UK friend. Good for you! Positive forward thinking and movement! Now you're being proactive again,,,I'm so impressed with you. I think you're on the right track now. I expect the Mayo folks will be interested in working with you. Hopefully, the cost isn't prohibitive and/or they have assistance available for you. I feel good about this for you...Bless you, elizabeth

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1 reply
change25 | @change25 | May 24, 2021
In reply to @ess77 "Hello, our UK friend. Good for you! Positive forward thinking and movement! Now you're being proactive..." + (show)
@ess77

Hello, our UK friend. Good for you! Positive forward thinking and movement! Now you're being proactive again,,,I'm so impressed with you. I think you're on the right track now. I expect the Mayo folks will be interested in working with you. Hopefully, the cost isn't prohibitive and/or they have assistance available for you. I feel good about this for you...Bless you, elizabeth

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I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not responded to my initial inquiry. Within the matter of hours, mayo have already responded. I was asked to provide my medical history so that they can pair me with the correct specialist. I do have some savings...so I can only pray that the cost isn't beyond that.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 24, 2021
In reply to @change25 "I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not..." + (show)
@change25

I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not responded to my initial inquiry. Within the matter of hours, mayo have already responded. I was asked to provide my medical history so that they can pair me with the correct specialist. I do have some savings...so I can only pray that the cost isn't beyond that.

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@change25

I'm pleased to hear that you got a response to Mayo. I'll look for an update when you get more information.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 24, 2021
In reply to @change25 "I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not..." + (show)
@change25

I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not responded to my initial inquiry. Within the matter of hours, mayo have already responded. I was asked to provide my medical history so that they can pair me with the correct specialist. I do have some savings...so I can only pray that the cost isn't beyond that.

Jump to this post

This may help: https://www.mayoclinic.org/appointments
Even if you talk to someone in the US, they can probably help you with connect with the clinic in England. Hope it works well for you!

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 24, 2021
In reply to @becsbuddy "This may help: https://www.mayoclinic.org/appointments Even if you talk to someone in the US, they can probably..." + (show)
@becsbuddy

This may help: https://www.mayoclinic.org/appointments
Even if you talk to someone in the US, they can probably help you with connect with the clinic in England. Hope it works well for you!

Jump to this post

@change25
Read this, too. There is more information on this page and a few others.
https://connect.mayoclinic.org/discussion/insurance-claim-denied-consultation-in-5-days/?pg=1#comment-226268

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1 reply
ess77 - Elizabeth | @ess77 | May 24, 2021
In reply to @change25 "Very helpful, thank you Becky." + (show)
@change25

Very helpful, thank you Becky.

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Ok!!! Now, we're clicking right along! This is productive and you may just find the answers soon...Mayo is indeed special in the care and the organizational aspects. Much different from most medical sources in the way they deal with the patients and with helping, reaching out to you. I expect to hear something good soon....Bless you, elizabeth

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change25 | @change25 | May 25, 2021

Mayo has responded, where they've paired me up with the most appropriate consultant for my medical issues. I'm just waiting for a call from one of their bookers so they can go through my options and pricing for a tailored exam. Any suggestions as to what I should specifically request?

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