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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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Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 8, 2021
In reply to @change25 "Thanks as always John. Of course, he initially believed it was a b12 deficiency but my..." + (show)
Profile picture for change25 @change25

Thanks as always John. Of course, he initially believed it was a b12 deficiency but my levels were on the upper range of normal. He doesn't have much experience so he's consulting with a neurologist before he sends me for an MRI scan. I've also got the dentist next week, where he's requested an X-ray as it can identify craniofacial changes linked to PRS. I'm just hoping that a conclusion can be made soon. I've already had to put my studies on hold along with missing out on two jobs offers but my health is my main priority I suppose.

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@change25 You are certainly a strong and resourceful young man! May I ask what you were studying in school?

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change25 | @change25 | May 8, 2021
In reply to @amandajro "@change25 you are giving back to so many people, more than just the ones who comment/like..." + (show)
Profile picture for Amanda Roe @amandajro

@change25 you are giving back to so many people, more than just the ones who comment/like your posts, right here on Connect!

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That's lovely to hear, thank you.

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change25 | @change25 | May 8, 2021
In reply to @hopeful33250 "Hello @change25, I hope that your doctor does find a diagnostic label to put on all..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @change25,

I hope that your doctor does find a diagnostic label to put on all of the symptoms you have experienced. It is difficult to cope with all of these problems and yet not know the disorder.

Will you post again when you have some more information?

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Absolutely. I'll constantly update this space as and when I gain new information. Thank you, I'm hoping that he's misdiagnosed me as while it is nice to have some closure the prognosis doesn't look great.

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change25 | @change25 | May 8, 2021
In reply to @becsbuddy "@change25 You are certainly a strong and resourceful young man! May I ask what you were..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@change25 You are certainly a strong and resourceful young man! May I ask what you were studying in school?

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You're too kind, funnily enough I was originally studying neuroscience but switched to economics. Through this experience it has renkilded my desire to revisit what I initially started. So when my health allows me to I'll be reapplying to study neuroscience.

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Profile picture for ess77 - Elizabeth
ess77 - Elizabeth | @ess77 | May 8, 2021

You never know where life's path will lead...we have to be open to see, understand and follow. You are doing that! BEAUTIFULLY!
BLESSINGS on your journey. Elizabeth

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change25 | @change25 | May 9, 2021

Update: For the time being they've decided to put the MRI scan on hold. They've stated that noticeable atrophy has taken place. However, the neurologist is hesitant as it's extremely rare for PRS to affect both sides of the face. Instead, they've decided to refer me to an endocrinologist where they will conduct a full hormone profile. I must praise the medical staff as they are doing everything they can to diagnose me.

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ess77 - Elizabeth | @ess77 | May 9, 2021
In reply to @change25 "Update: For the time being they've decided to put the MRI scan on hold. They've stated..." + (show)
Profile picture for change25 @change25

Update: For the time being they've decided to put the MRI scan on hold. They've stated that noticeable atrophy has taken place. However, the neurologist is hesitant as it's extremely rare for PRS to affect both sides of the face. Instead, they've decided to refer me to an endocrinologist where they will conduct a full hormone profile. I must praise the medical staff as they are doing everything they can to diagnose me.

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I agree! But, I also praise you for being the best advocate for yourself! You have and are doing a wonderful job getting your medical professionals on your side, working for you. Sounds like you're on your way now to getting real answers.....you can be proud of yourself. Many folks cannot do this for themselves...you are special!
Blessings...keep in touch...Elizabeth

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change25 | @change25 | May 9, 2021
In reply to @ess77 "I agree! But, I also praise you for being the best advocate for yourself! You have..." + (show)
Profile picture for ess77 - Elizabeth @ess77

I agree! But, I also praise you for being the best advocate for yourself! You have and are doing a wonderful job getting your medical professionals on your side, working for you. Sounds like you're on your way now to getting real answers.....you can be proud of yourself. Many folks cannot do this for themselves...you are special!
Blessings...keep in touch...Elizabeth

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Some would say I'm irritating, haha. I believe persistence is key. Much of my confidence in pushing for answers is from the support of the wonderful members on here such as yourself. When it comes to medical professionals - many seem intimidated by them, where they don't want to feel like a burden. However, If you ask the right questions and approach them in the correct manner the majority will do everything they can to resolve your issues.

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ess77 - Elizabeth | @ess77 | May 9, 2021
In reply to @change25 "Some would say I'm irritating, haha. I believe persistence is key. Much of my confidence in..." + (show)
Profile picture for change25 @change25

Some would say I'm irritating, haha. I believe persistence is key. Much of my confidence in pushing for answers is from the support of the wonderful members on here such as yourself. When it comes to medical professionals - many seem intimidated by them, where they don't want to feel like a burden. However, If you ask the right questions and approach them in the correct manner the majority will do everything they can to resolve your issues.

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Absolutely! Theirs is a helping profession....blessings as you walk this journey. elizabeth

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Profile picture for Teresa, Volunteer Mentor
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Teresa, Volunteer Mentor | @hopeful33250 | May 10, 2021
In reply to @change25 "Some would say I'm irritating, haha. I believe persistence is key. Much of my confidence in..." + (show)
Profile picture for change25 @change25

Some would say I'm irritating, haha. I believe persistence is key. Much of my confidence in pushing for answers is from the support of the wonderful members on here such as yourself. When it comes to medical professionals - many seem intimidated by them, where they don't want to feel like a burden. However, If you ask the right questions and approach them in the correct manner the majority will do everything they can to resolve your issues.

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I understand what you are saying @change25. I was much older than you when I discovered that when you have a hard-to-diagnose problem, you need to be persistent, even if means being irritating. I don't mind being irritating now because I realize that persistence is the best way to get and to keep the attention of your medical team.

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