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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Mentor
John, Volunteer Mentor | @johnbishop | May 8, 2021
In reply to @change25 "After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just..." + (show)
@change25

After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just going to check with his colleagues first before sending for an MRI scan. Not sure it's the news I wanted, but at least it is something.

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@change25 - I'm hoping you can let us know what you find out after your doctor and his colleagues meet. If you are looking for more information on the Parry-Romberg Syndrome here are a few links.

Parry-Romberg Syndrome Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Parry-Romberg-Information-Page
Parry Romberg Syndrome - NORD: https://rarediseases.org/rare-diseases/parry-romberg-syndrome/

REPLY
1 reply
change25 | @change25 | May 8, 2021
In reply to @johnbishop "@change25 - I'm hoping you can let us know what you find out after your doctor..." + (show)
@johnbishop

@change25 - I'm hoping you can let us know what you find out after your doctor and his colleagues meet. If you are looking for more information on the Parry-Romberg Syndrome here are a few links.

Parry-Romberg Syndrome Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Parry-Romberg-Information-Page
Parry Romberg Syndrome - NORD: https://rarediseases.org/rare-diseases/parry-romberg-syndrome/

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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.

REPLY
2 replies
ess77 - Elizabeth | @ess77 | May 8, 2021
In reply to @change25 "Thanks as always John. Of course, he initially believed it was a b12 deficiency but my..." + (show)
@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.

Jump to this post

@change25 It sounds like you got your doctor to hear you, asked the right questions and gave him the info he needed to start the searching. Good for you! Sounds good to me that he realizes he and you need more input and several minds working on this.
As I suggested before, take a deep breath and stay the focused person you are. You are getting it done and finding important answers. And, you are seeing doctors now, not in months. So, all this is working toward answers, getting to the best place and best specialists. He's consulting with a neurologist, so I hope that means you will soon be referred to him or someone for a work-up.
I believe after you take care of your health you will have the best job come your way. And, then continue your studies as well. It's hard to refocus on a completely different direction, but you are thinking clearly and facing these challenges. I'm impressed you are handling all this so well, you found us and got the support you needed and some information to guide your steps.
Keep us informed as you get more questions and more answers. Research, but be cautious to follow John's lead. He's very careful to only use reliable health sources. Stay focused, my friend, and God bless you. May He give you less pain, the people who will guide your journey to the best outcome. elizabeth

REPLY
1 reply
change25 | @change25 | May 8, 2021
In reply to @ess77 "@change25 It sounds like you got your doctor to hear you, asked the right questions and..." + (show)
@ess77

@change25 It sounds like you got your doctor to hear you, asked the right questions and gave him the info he needed to start the searching. Good for you! Sounds good to me that he realizes he and you need more input and several minds working on this.
As I suggested before, take a deep breath and stay the focused person you are. You are getting it done and finding important answers. And, you are seeing doctors now, not in months. So, all this is working toward answers, getting to the best place and best specialists. He's consulting with a neurologist, so I hope that means you will soon be referred to him or someone for a work-up.
I believe after you take care of your health you will have the best job come your way. And, then continue your studies as well. It's hard to refocus on a completely different direction, but you are thinking clearly and facing these challenges. I'm impressed you are handling all this so well, you found us and got the support you needed and some information to guide your steps.
Keep us informed as you get more questions and more answers. Research, but be cautious to follow John's lead. He's very careful to only use reliable health sources. Stay focused, my friend, and God bless you. May He give you less pain, the people who will guide your journey to the best outcome. elizabeth

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Without question, these last few months have shown me that I should never take my health for granted. As a result my focus has shifted and has lead me down a different path. Once my health allows me to I definitely want to pursue something that will help and give back - there can never be too much of that in this world. Thank you for you kind words Elizabeth, all the best.

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1 reply
Amanda Roe | @amandajro | May 8, 2021
In reply to @change25 "Without question, these last few months have shown me that I should never take my health..." + (show)
@change25

Without question, these last few months have shown me that I should never take my health for granted. As a result my focus has shifted and has lead me down a different path. Once my health allows me to I definitely want to pursue something that will help and give back - there can never be too much of that in this world. Thank you for you kind words Elizabeth, all the best.

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

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 8, 2021
In reply to @change25 "After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just..." + (show)
@change25

After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just going to check with his colleagues first before sending for an MRI scan. Not sure it's the news I wanted, but at least it is something.

Jump to this post

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?

REPLY
1 reply
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)
@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.

Jump to this post

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

REPLY
1 reply
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)
@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.

REPLY
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)
@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?

Jump to this post

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.

REPLY
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)
@becsbuddy

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

Jump to this post

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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