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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@becsbuddy

@cdesharn That’s awful and unprofessional! How long since you have heard from her? Maybe you can call NORD and GARD and let them know so they don’t continue to refer her. And maybe they’ll give you another name.
Have you tried calling a comprehensive or university medical center in your area? The doctors there are usually a step above community doctors. They might have a doctor who specializes in lipoatrophy. Can you make that call on Monday?

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@becsbuddy Sorry I didn’t see your response. So her assistant contacted me and seemed interested, which surprised me but then asked for a referral. Why would I need a referral if it’s for a clinical trial after informing me they had several ongoing trials? Believe it or not, it’s so rare it’s not even listed among the rare diseases at the hospitals in my area. Apparently, my only option is to get expensive fillers through my Dermatologist.

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@becsbuddy

@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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I also think it is panniculitis (inflammation and then atrophy of the subcutaneous tissue). This happens in lupus and mixed connective tissue disease. Your MCTD diagnosis previously is because of the positive ANA with RNP antibodies. You have Raynauds and finger swelling, both classic in MCTD. Raynauds can be white, red, blue or purple. Of more concern are the stroke and TIA. Over 30% of people with lupus ( part of MCTD) have anti phospholipid syndrome, which can cause clots that cause heart attacks, strokes, DVTs, blood clots in lungs, eyes etc. A simple blood test can tell you if you have that. (Anticardiolipiin antibodies). If so, you need to be on medication to prevent clots! Please see your Dr and get that test done and see a rheumatologist for the MCTD. A dermatologist can do a biopsy of the dent with immunoflourescent studies to nail down the panniculitis diagnosis. The immunoflourescent study on the biopsy tissue is essential. The dermatologist can also inject a steroid to help halt the inflammation and progression of the dent. Then later a “filler” can be injected to improve the appearance. Those have to be repeated periodically. I know this is a lot to digest. Do some research and look at images online of panniculitis. Lipoatrophy follows the inflammation. I hope you get help and future problems prevented! Take care.

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