Any thought on what this is? - Face "dent"

Posted by jonfortier @jonfortier, Mar 15 3:25pm

2.5 Months I started getting an indention in my face. It has progressed in that it is getting larger and more defined. I saw the dr 3 weeks ago and he was stumped. But did say he thinks it is muscle wasting, just doesn't know what could cause it. Ordered a CT Scan which showed no deformities. A friend thought I should contact the Mayo Clinic and ask for guidance. But I don't know how.
I am 57, a controlled type 1 diabetic for over 40 years, recent history of CVA's and other vascular issues.

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Welcome @jonfortier, Your symptoms sound similar to another discussion started by @change25 here:
--- At a loss, multiple consultations still no answer...any idea?: https://connect.mayoclinic.org/discussion/at-a-loss-multiple-consultations-still-no-answer-any-idea/.

@change25 mentioned finally being diagnosed with Parry-Romberg Syndrome and may have some information or experience to share with you. I thought I would share these references to see if it sounds similar to your experiences.
--- 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/

Parry Romberg Syndrome is listed as one of the conditions treated by Mayo Clinic - https://www.mayoclinic.org/departments-centers/plastic-reconstructive-surgery-mayo-clinic/sections/conditions-treated/orc-20473072

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@johnbishop

Welcome @jonfortier, Your symptoms sound similar to another discussion started by @change25 here:
--- At a loss, multiple consultations still no answer...any idea?: https://connect.mayoclinic.org/discussion/at-a-loss-multiple-consultations-still-no-answer-any-idea/.

@change25 mentioned finally being diagnosed with Parry-Romberg Syndrome and may have some information or experience to share with you. I thought I would share these references to see if it sounds similar to your experiences.
--- 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/

Parry Romberg Syndrome is listed as one of the conditions treated by Mayo Clinic - https://www.mayoclinic.org/departments-centers/plastic-reconstructive-surgery-mayo-clinic/sections/conditions-treated/orc-20473072

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Jump to this post

Thank you!

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I posted this in another group that led me here. It was suggested that it sounded like somebody who had Parry-Romberg Syndrome. There are a lot of symptoms that he had that I don't though. Yet the thought of it being auto immune related was intriguing as I tested positive in 2019 for ANA-RNP while a neurologist was trying to figure out if my leg problem was related to nerves, which it wasn't. I was referred to a Rheumatologist, but was unable to get an appt. PC said there was high false positives of that test.
I moved to a different part of the county and the leg issue was diagnosed as PAD due to blockages, which I have a recent history of. Surgeon said no blockages, interventional cardiologist said there were and put me on meds which didn't help.
Also, recently I had a seizure which resulted in an MVA. PC thinks I had a TIA which caused a seizure given my history of strokes. Still trying to figure that out.

Anyway, this is what I said in my prev post: "2.5 Months I started getting an indention in my face. It has progressed in that it is getting larger and more defined. I saw the dr 3 weeks ago and he was stumped. But did say he thinks it is muscle wasting, just doesn't know what could cause it. Ordered a CT Scan which showed no deformities. A friend thought I should contact the Mayo Clinic and ask for guidance. But I don't know how.
I am 57, a controlled type 1 diabetic for over 40 years, recent history of CVA's and other vascular issues."

Could it be caused by an autoimmune disorder? MCTD like Neuro thought I had in 2019?

REPLY
@jonfortier

I posted this in another group that led me here. It was suggested that it sounded like somebody who had Parry-Romberg Syndrome. There are a lot of symptoms that he had that I don't though. Yet the thought of it being auto immune related was intriguing as I tested positive in 2019 for ANA-RNP while a neurologist was trying to figure out if my leg problem was related to nerves, which it wasn't. I was referred to a Rheumatologist, but was unable to get an appt. PC said there was high false positives of that test.
I moved to a different part of the county and the leg issue was diagnosed as PAD due to blockages, which I have a recent history of. Surgeon said no blockages, interventional cardiologist said there were and put me on meds which didn't help.
Also, recently I had a seizure which resulted in an MVA. PC thinks I had a TIA which caused a seizure given my history of strokes. Still trying to figure that out.

Anyway, this is what I said in my prev post: "2.5 Months I started getting an indention in my face. It has progressed in that it is getting larger and more defined. I saw the dr 3 weeks ago and he was stumped. But did say he thinks it is muscle wasting, just doesn't know what could cause it. Ordered a CT Scan which showed no deformities. A friend thought I should contact the Mayo Clinic and ask for guidance. But I don't know how.
I am 57, a controlled type 1 diabetic for over 40 years, recent history of CVA's and other vascular issues."

Could it be caused by an autoimmune disorder? MCTD like Neuro thought I had in 2019?

Jump to this post

It may be a form of lipoatrophy. Loss of fat due to panniculitis or deep form of lupus type of connective tissue disease. If possible consult a dermatologist for testing.

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@seniormed

It may be a form of lipoatrophy. Loss of fat due to panniculitis or deep form of lupus type of connective tissue disease. If possible consult a dermatologist for testing.

Jump to this post

Thanks, I'll try and get a referral from my PC.

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@jonfortier

I posted this in another group that led me here. It was suggested that it sounded like somebody who had Parry-Romberg Syndrome. There are a lot of symptoms that he had that I don't though. Yet the thought of it being auto immune related was intriguing as I tested positive in 2019 for ANA-RNP while a neurologist was trying to figure out if my leg problem was related to nerves, which it wasn't. I was referred to a Rheumatologist, but was unable to get an appt. PC said there was high false positives of that test.
I moved to a different part of the county and the leg issue was diagnosed as PAD due to blockages, which I have a recent history of. Surgeon said no blockages, interventional cardiologist said there were and put me on meds which didn't help.
Also, recently I had a seizure which resulted in an MVA. PC thinks I had a TIA which caused a seizure given my history of strokes. Still trying to figure that out.

Anyway, this is what I said in my prev post: "2.5 Months I started getting an indention in my face. It has progressed in that it is getting larger and more defined. I saw the dr 3 weeks ago and he was stumped. But did say he thinks it is muscle wasting, just doesn't know what could cause it. Ordered a CT Scan which showed no deformities. A friend thought I should contact the Mayo Clinic and ask for guidance. But I don't know how.
I am 57, a controlled type 1 diabetic for over 40 years, recent history of CVA's and other vascular issues."

Could it be caused by an autoimmune disorder? MCTD like Neuro thought I had in 2019?

Jump to this post

Hi @jonfortier, I merged your 2 discussions into one discussion that appears in both groups. I did this so you would only have one place to follow for replies.

Here's some information from Mayo Clinic about MCTD.
- Mixed connective tissue disease https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

Do you have other symptoms or indications of MCTD?

REPLY
@colleenyoung

Hi @jonfortier, I merged your 2 discussions into one discussion that appears in both groups. I did this so you would only have one place to follow for replies.

Here's some information from Mayo Clinic about MCTD.
- Mixed connective tissue disease https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

Do you have other symptoms or indications of MCTD?

Jump to this post

Thank you.

Yes, I have Reynauds. Diagnosed 3 or 4 years ago, but my fingers don't turn white. They turn purplish blue and painful, severe pain when they are warmed. Finger also swell. Nothing else on the list in the link you included.

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OMG! I have the same thing in my left cheek!!! My Dermatologist said it was idiopathic Lipoatrophy. She hasn’t seen me for a while and it’s gotten worse! I asked for an emergency appointment and can’t get in until April 5th. Was told they treat it with Sculptra! I’m dealing with anxiety and depression which caused multiple medical issues and as a result have lost a lot of weight, and has affected my face as well!! I’m embarrassed by this and wish someone would take things more seriously! I don’t even look like myself anymore!

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@cdesharn

OMG! I have the same thing in my left cheek!!! My Dermatologist said it was idiopathic Lipoatrophy. She hasn’t seen me for a while and it’s gotten worse! I asked for an emergency appointment and can’t get in until April 5th. Was told they treat it with Sculptra! I’m dealing with anxiety and depression which caused multiple medical issues and as a result have lost a lot of weight, and has affected my face as well!! I’m embarrassed by this and wish someone would take things more seriously! I don’t even look like myself anymore!

Jump to this post

How long was the progression?

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@cdesharn

OMG! I have the same thing in my left cheek!!! My Dermatologist said it was idiopathic Lipoatrophy. She hasn’t seen me for a while and it’s gotten worse! I asked for an emergency appointment and can’t get in until April 5th. Was told they treat it with Sculptra! I’m dealing with anxiety and depression which caused multiple medical issues and as a result have lost a lot of weight, and has affected my face as well!! I’m embarrassed by this and wish someone would take things more seriously! I don’t even look like myself anymore!

Jump to this post

@cdesharn @jonfortier This site describes lipodystrophy/lipoatrophy as being very similar. It also talks about the treatment as being saline injections
https://my.clevelandclinic.org/health/diseases/23441-lipodystrophy
Have you noticed if any family members have this same diagnosis?

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