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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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)

@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/

change25 | @change25 | May 24, 2021

In reply to @becsbuddy "@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" + (show)

Very helpful, thank you Becky.

ess77 - Elizabeth | @ess77 | May 24, 2021

In reply to @change25 "Very helpful, thank you Becky." + (show)

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

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?

ess77 - Elizabeth | @ess77 | May 25, 2021

In reply to @change25 "Mayo has responded, where they've paired me up with the most appropriate consultant for my medical..." + (show)

Wonderful! That was really fast, but I expect that from this crowd!

What specialty? Consultant? Rheumatology, neurology, internist?
I suggest you just be clear about what's been happening, using a lot you've learned from this group. Hopefully, you're keeping a journal and writing down your progression of symptoms, timeframe of development of symptoms, maybe go back and re-read your messaging on this group to get specifics you may have forgotten. Also, you've taken care of your medical records getting to them?

You are on your way. My experience is Mayo is quite helpful financially, especially if you have some real issues that need their help, which you do, of course. This is great! I'm very pleased for you.
Blessings, elizabeth

change25 | @change25 | May 25, 2021

In reply to @ess77 "Wonderful! That was really fast, but I expect that from this crowd! What specialty? Consultant? Rheumatology,..." + (show)

I was shocked to see a reply after opening my email. Very quick indeed...It doesn't state their speciality just that they're a physician with a focus in general medicine.

At the moment that seems to be the issue. Where my medical files reveal very little. That's where I'm a bit apprehensive as the cost will quickly climb if multiple tests are needed. After I've recieved this phone call I should have a better perspective of what they can offer.

That's a good point, I'll look back at previous posts to see if I've missed anything out of my logs.

athenalee | @athenalee | May 26, 2021

In reply to @change25 "I was shocked to see a reply after opening my email. Very quick indeed...It doesn't state..." + (show)

Exciting news! I’m sure you’ve done this…remember to make a list of questions to have in front of you. Also, see if you can send your symptoms list and timeline to the provider in advance. My best wishes!

Becky, Volunteer Mentor | @becsbuddy | May 26, 2021

In reply to @change25 "Mayo has responded, where they've paired me up with the most appropriate consultant for my medical..." + (show)

Yea!! That’s so wonderful that Mayo contacted you! Don’t worry about what to specifically request. Just have as much information from your notebook/journal describing what has happened. Be ready to take notes! the bookers who call you
are also experts, so let them ask the questions. But do have a list of questions, just in case. I’m so excited for you.
Sorry I’ve been out of touch for a few days. As soon as it was safe, I flew east to see my elderly mother.
Keep us informed!

change25 | @change25 | May 27, 2021

In reply to @becsbuddy "Yea!! That’s so wonderful that Mayo contacted you! Don’t worry about what to specifically request. Just..." + (show)

That's lovely, I hope you had a nice time.
I spoke with one of their bookers yesterday, the cost was very reasonable. I wasn't pressured into booking anything and they've provided me with a link with all the information I need.
I'll give my local hospital a few more weeks to respond. I think the more information I can recieve the better my experience at mayo will be.

Becky, Volunteer Mentor | @becsbuddy | May 27, 2021

In reply to @change25 "That's lovely, I hope you had a nice time. I spoke with one of their bookers..." + (show)

Maybe tell the local hospital that you have an ‘upcoming’ appointment with Mayo Clinic and they’ll speed things up!
Can someone go with you as a second set of ears and note taker?

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