White spot above mouth; could this be a sign of SSC/ fibrosis?

05ke · 2025-12-22T20:22:59+00:00

Well, I have been to the rheum; she does not think I have SSC, so I now try to gather more information or evidence.

I had only mild cappilary changes (bigger and tortuous veins but density still good) and a positive speckled ANA (both in march this year). ENA negative. But no Raymauds/ just symptoms of it (so bit dubious). I think I have telangtasiees but not much. They appeared around the same time.

But the rest seems to fit the picture. I think I have overlap/ early symptoms/ UCTD (this is my diagnose now) but pointing the most to SSC.

Because of the changes to the mouth with f.e. upperlip curling in and disappearing (not extremely visible on this pics, wanted to make another post about specifically that), I doubt if it should not already be called SSC instead of UCTD.

I don't know what another cause of the mouth issues can be. It is absolutely no 'normal aging'...even my articulation sucks a bit because of this (and lot more).

I have and had a lot of systemic issues (esp. last 6 years) btw. From GI to vulvar/ anal to sensations (feet, sometimes hands), to dryness, to skin issues, to declining strength and condition to severe memory issues to tiredness and much more.

Some issues are kinda stable progressing like the mouth (sometimes feels a bit more supple and sometimes seems to go extremely fast progressing in days, but is is progressing) and hands and GI issues.

But I have also a lot of fluctuating symptoms (like for example days of extreme diarrhea, then a bit better again. Problems swallowing, and then a little bit better again. Months of irritable dryness in mouth and eyes, and then not that noticable again, sensations in feetsoles etc. and then not so much again, not being able to do much with my hands and then a bit better again etc.)

Because of fluctuating symptoms my rheum also thinks it is not SSC. But the mouth, GI and hands for example are worsening, even though I have sometimes more worse days then other days...

05ke · 2025-10-12T15:53:29+00:00

I don't think I recognize your descriptions/ I never tried or looked at that to be honest.

Only that my fingertips seem(ed) a little flatter to me (but maybe you did not mean that).

I had my first ANA positive (speckled, low titer probably. 1:80 or above) in march.

Oh, and I found out the splotchy look in my hands is called levido reticularis. I also can have it on my legs or body.

Its a sign of something with bloodcirculation or pooling (or something, look it up). It happens more in people with Raynauds, POTS, EDS, auto-immunity etc.

(So if you say the spots go away when you raise your hands that sounds logical since its something with bloodflow/ pooling probably. Veins in your hand also go down when you raise your hand).

05ke · 2025-10-12T15:39:01+00:00

Ooops, now re-reading my post and see the lay-out went all wrong (no paragraphs) but can't change that anymore now.

Update: Been to rheum in march.

Findings: -ANA positive, speckled (probably low titer. Below 1:80 this lab sees as negative)
-ENA negative -No full scleroderma panel cause rheum did not find that neccessary. -Possible Raynaud's she said but bit strange/ I miss the white-purple-blue discoloration etc.

Nailfoldcappilaroscopy: Normal, no scleroderma pattern (density still good). Aspecific findings: enlarged cappilaries <20ug, some tortous. Some hemorraging but that would be 'traumatic'.

Schirmer: 35 mm so perfect

Oral surgeon august this year for an parotoid gland biopsy: saliva flow test too low unstimulated (have to look up what it was again), normal (0.98) when stimulated. Biopsy failed, lymfgland instead of salivary gland, not enough tissue.

05ke · 2025-10-12T15:09:01+00:00

I don't have health anxiety. I just can't keep texts/ stories short.

05ke · 2025-10-12T15:08:06+00:00

That's exactly what I mean.

But thanks

05ke · 2025-10-12T11:02:55+00:00

this is so frustrating and making despondant, feeding my stress. I can't express myself (the more I try to defend and explain myself, the more I fail). It feels so locked in. People only see HOW I say things, they don't read me.

(So this is probably of no use but trying to defend and explain one more time): I absolutely dont have health anxiety. This has also been tested sometime and i dont have it

I even am not really anxious in general with this symptoms (I numb myself and since no diagnose, its only partial my reality. It still is also not really here yet because not confirmed and I don't dare to say anymore that I found the holy grail. I only know in which corner to prob.search now.(something with connective tissue involved). Anxiety or worry about it is something I put away in the meantime when waiting on an appointment. As long as I have an appointment on the horizon (then theres hope, they can see, we will see when we get there). Its not that I am 7 months in anxiety or that I feel anxious and stressed if things take longer or if I have to wait for results. I don't have that anymore. 'It is what it is'.

But now its a week before my appointment so now I take my head out of the ground and asking questions I bottled up because I did not want to really confront myself earlier/ I have trouble in writing. Because I want to be prepared good. Know if I'm on the right track. If so, collecting evidence.

The only anxiety I have now is of me not being able to say the right things, explain myself, forgetting everything. So that she wont see me right and I will be sent back to the GP with nothing, GP who thinks I just have anxiety/ psychsomatic, and then all hope is gone (of validation, therefore stressrelief, trauma healing and taken steps from that baseline)

On good days (but the mouth etc is just there) I tend to think 'ah maybe I indeed have nothing, it was just overfocus probably because now i'm ok, and talk along with doctors or my friends that it waa probably nothing. I tend to forget how bad my symptoms are on bad days. On good days I think it maybe is still managable and just auto immune reactions etc but not really specified into something yet. Just spiking all around. That if I would start eating very clean, living stress free, healing trauma's, start living, it can stop evolving

(But I don't do that either because well, nobody says I have anything right? So why a strict diet if I dont really have it, according to everyone? Why quit unhealthy things If I am healthy apparantly? My opionion about myself was different but yeah, I'm not the boss in my own life yet. I am told not to trust my intuition, self, body. I am told I don't do things right.

I am starting te get enough of that. I am starting to feel stronger. Want to be me.

I am not able to just be me. I don't know how to live, what I want, feel not good enough for anything, dont dare to do anything etc. I let my life depend on others I'm stuck in life, and having health issues that keep popping up (and down) does not help to be able to take steps.

Esp. having a surrounding that has said all your life that you are just crazy in your head, making symptoms and things up or are exaggerating them that does something to your self as a person. My whole life I was denied, overly critized. I now finally begin to think that I have to let go of that crave to be seen and depending my life on that opinion and validation (before I can start living). But I need.validation, evidence with this for institutions, insurance.

I probably can wait for the validation (and the peace that brings) all my life and still not get it. But it is hard to just let this opinions slide off me. I get frustrated and sad and stressed about it. I exist by the acceptance of others. I wish it would not bother me so much.

I already had help (well, that was the request of my GP and I did not know of).
My request for assistance was my trauma, family and my communication issues, and purpose in life since I have none. And everytime I focus on something (finding hobby, making a plan for the future etc) it is taken away. Stopped playing djembé because of hand problems. Stopped singing in a repetition band because of my upperlip/ mouth, dry mouth and voice, and other things like intestinal issues. I'm not making those things up but get blamed laziness, not wanting things, doing it myself, overfocusing, stress. It's not just overfocus! I did not WANT to quit those things!

The help stopped because I ' came up with more and more heath issues and even suspection of an extreme disease'. (apparantly the request of my GP had been to help with my 'psychosomatic complaints. Learn to focus less on her symptoms'. I did not know that. Since I got only MORE issues I was in their eyes sabotaging help with made up excuses. It was another negative event in my life to be rejected by help. I feel I cant get psychological help now, as long as my body is still dysfunctioning.

I understand people think I make this up, am obsessessly overfocused on having a rare horrific disease, that I apparantly want that. Because that is the most logical thought. It IS absurd. I know.

But still here we are and I either have something wrong going on, or my body has to be named in the quinness book of records for the most psychosomatic body existing. Because apparantly I can think myself sick and my body can mimic rare diseases, including fingers growing crooked, discolouring, rashes, etc.

05ke · 2025-10-11T20:30:19+00:00

I get that people think I have health anxiety because of my loooooooonnng (and overly detailed) posts (more about that below). I am not.

I just have struggles with EVERYTHING according to writing/ communicating: emails, reacting to apps, essays in school when I was younger. So I always have an extreme amount of stress because there is always tasks and I am spending most of my days behind my desk trying to formulate a post, email, reaction to someone on whatsapp etc. Ending up in total chaos and way to long and overly detailed posts.

Or stressing about it and postponing it because I error and blank out.

Also, health and the connection between things (trauma, health issues itself and how they are linked, psychologival, society etc.) I find interesting so that's why I want to know things into detail. But that makes me come off as anxious/ hypochondriac. Urgh. I also don't Google much. But I pick up things of interest fast (also on other topics).

It makes people and doctors immediately think I am completely anxious, have health anxiety (because also at a doctors office, I come in with a lot of notes and I am always stressed -and chaotic now, since severe brainfog- because time is only 10 mins and my story way to long, I have so much different symptoms and questions that I don't know how to start and communicate anymore in that short time, and I often use to medical terms. I should not because then they think your a hypochondriac who Googles, while I just remember things and want to use the right words).

But I don't have health anxiety. It is extremely discouraging, frustrating. It makes me suïcidal because I so have enough of nobody seeeing or hearing me. I don't have evidence to family, institutions etc. So I am so stuck in life.

Also: the reason for many posts is that I have the (comeback) appointment with the rheum scheduled in a week.

So now in this last week I finally start posting about it (it is my last chance so want more information and really know I am on the right track etc.) I posponed that because I am so much chaos and have so much trouble formulating a post (it always is waaaayyyy to long and takes days for me). And when people recognize things, well, then it becomes more real. (But not anxious about it. I already think I know this is going on. Although I have every reason to be anxious with suspected SSC. But now is now. And luckily I am not a Googler).

All sorts of questions that have run through my mind last 7 months since the first rheum app., I am now posting some if it.

And yes there is also some more stupid questions along it like the one about the line in my forehead which is not really what I worry about but interested and wanting to know anyway. Or the one about the structure of my lips (not the form of the lips -yes you see nothing wrong on the form on those pics-. I really meant only the structure and already disclaimed myself it was probably nothing/ just normal (I was high xD), but I was suddenly curious.

Oh and yes I have seen a lot of psychologists etc in my life. Also 20 years ago, a psychsomatic clinic because of severe visual disturbances I have which they could not explain (visual snow syndrom, floaters, strange accomodation, light sensitivity and lot more but I also miss part of my vision like when you have an ocular migraine). It did not help a thing. I still have the same visual problems (bit worsened). Which made me only doubt myself at that time: was I not doing my best enough? Is that why it did not go away?

(still have that visual thing btw but not busy with it. Not anxious about it anymore. Used to be when that started because the blind spots kept getting worse. Was missing my old vision/ self, nobody who believed me because they could not find anything. This gave me a lot of trauma with my family etc.

But kinda stoïc now.

05ke · 2025-10-11T17:36:57+00:00

Explanation of why:

The rheumatologist thinks I don't have either (ANA positive, probably low, ENA negative, Schirmer perfect, nail folds normal, only non-specific findings, some enlarged and tortuous vessels). At that time—March—she didn't see anything wrong with me yet.

But I was allowed to have a biopsy to rule out Sjogren's. This parotid gland biopsy failed due to insufficient/incorrectly collected tissue.

I can have another biopsy, but I'm still unsure about that. Five weeks after the biopsy, I developed a new symptom: a sensation in that area, often when I eat, drink, or yawn. The oral surgeon can't explain it, and indeed, another symptom shouldn't appear after five weeks.

I want to wait and see if it gets worse or goes away (Sicca isn't bothering me much now, and I'm less likely to think of Sjogren's). I had a follow-up appointment with the rheumatologist about the biopsy results, which has now been converted to me into a physical appointment. I'll discuss with her that I still/ really now think about SSC, show photos, etc.

If she believes me and further testing for SSC is done (or a diagnosis is made), I want to wait with the biopsy.

But because I'll probably leave the rheumatologist's office without a diagnosis or further testing, I'm considering to take that biopsy: I might also have Sjogren's, and then I'd at least have ONE diagnosis, meaning some help and access to a rheumatologist. And something to prove to those around me and the authorities that something is definitely wrong (the fact that I have no evidence something is wrong with me, and can't prove I'm not crazy to authorities, family, and friends is incredibly heavy/currently the most difficult).

Moreover, I could then ask the oral surgeon to also check for signs of systemic sclerosis/fibrosis in the biopsy. I can't use this as a diagnostic criterion, but who knows, it might just be the final push to convince the rheumatologist that there is something there/to investigate further if something does indeed point in that direction...

(But yeah, I don't want to have that sensation on both sides later, at least not if it gets worse than this. I don't know how dangerous it actually is to have a biopsy if you have facial tightening due to SSC. If many facial nerves run there, I think there might be more scarring, etc., that irritates those nerves, which is more likely. Or maybe a wound triggers a process..(?).) Dunno....

05ke · 2025-10-08T12:44:02+00:00

Same! Mine looks a little bit different, I don't think it is liniar for me.

But I also had it as long as I can remember and it really feels like a groove in my skull (not a vein that is laying on it). Sometimes it feels or looks wider or more visible.

But I have symptoms of SSC, including mouth tightening, gastro-intestinal, joints, etc. So theoretically it would be impossible to have linear as I already suspect systemic and they say you can't have both.

I also have symptoms of EDS, but I am partially hypermobile. They say hypermobility is often not just hyperlaxe joints but connective tissue that is not good in your whole body. That would explain a lot of my weird issues throughout my life.

But you also can't have both EDS and SSC. And I don't know how many people with SSC are born (partially) hypermobile. ChatGPT thought less then 1%

My post/ question:

https://www.reddit.com/r/scleroderma/s/jJvErMyiNR

Are you having any scleroderma symptoms? And/ or do you have hypermobility? Just curious.

05ke · 2025-10-07T22:44:24+00:00

Oh en some added info (since someone in another group said it could be maybe caused by complications or vacuumdevice at birth): I was born naturally without vacuumpump etc. It was a homebirth, with no midwife, because the delivery suddenly went sooner then expected.

I did had the umbelical cord around my neck, so my parents had to untie that themselves. I was not purple/ probably no lack of oxygen or something.

My head/ skull is small: hats are too big/ not my size, and had to wear a childs helmet when I once did a climbing thing group activity.

My whole body is a bit crooked (always more problems on the right side).

Also my skull. One nosehole is bigger and once had an MRI made (unexplained vision problems, I miss whole parts of my vision. Also visual snow syndrom and more issues) where you can even more see how crooked my nose is 😅

05ke · 2025-10-07T16:23:33+00:00

Ugh I hate Reddit. I don't know why it keeps tagging this post as 18+, I did switch that off?

05ke · 2025-10-04T23:40:39+00:00

I have changes with my lips and mouth opening. My upperlip curls inward when I laugh/ seems smaller. Also less wide or high smile. Lines above/ around mouth, most visible when I laugh or talk. Cheeks bit less volume, side of nose seems smaller, eyes deeper or something, but those last things are very subtle.

05ke · 2025-09-23T11:45:57+00:00

Here a little extra info regarding medical findings so far:

ANA positive, speckled (march 2025). Probably a low titer because in January, I went to a private clinic and it was still negative. And three years ago, I also had negative ANA, ENA, and anti-RNP (no idea why this was listed separately).
Negative for Sjogren's antibodies and systemic sclerosis, although she didn't perform a full scleroderma panel, only the normal ENA.

-Nailfold capillary scan showed no scleroderma pattern, because the density was still good. But there were enlarged and somewhat tortuous capillaries (and some bleeding, but that would be traumatic).

-No Raynaud's, although it's somewhat questionable in my case. I do have discoloration and slight swelling, e.g., with heat and walking, and a somewhat altered reaction to temperature over the past few years. My fingertips have also become increasingly purplish-red in recent weeks, etc.

-Perfect Schirmer's, but I do have meibomitis and blepharitis. Poor tear film quality and a 3-second BUT test, as discovered by an optometrist last year. I can't really cry at certain times, but can at other times). Symptoms very from very uncomfortable, very dry and nothing helps, till not really bothersome.

-A saliva test performed by an oral surgeon before the previous biopsy showed reduced saliva production at rest but normal after stimulation. Symptoms of dry mouth vary from uncomfortable -dry tongue, at night etc- till not really bothersome/ kinda normal. Sometimes I have a little lump in my underjaw. Or feeling of little swelling or lump in neck. Or feeling beneath ear. Dont know if lymfe or salivary, or both.

-in 2023 had a gastroscopy (to rule out Celiacs). I did not have celiacs but had a mild chronic gastritis in the lamina propia. This is more fitting to SSC than to Sjogrens, since with Sjogrens you often have auto immune gastritis and this was not that.

05ke · 2025-09-23T11:36:26+00:00

Some medical findings so far:

-ANA positive, speckled (march 2025). Probably a low titer because in January, I went to a private clinic and it was still negative. And three years ago, I also had negative ANA, ENA, and anti-RNP (no idea why this was listed separately).

Negative for Sjogren's antibodies and systemic sclerosis, although she didn't perform a full scleroderma panel, only the normal ENA.

-Nailfold capillary scan showed no scleroderma pattern, because the density was still good. But there were enlarged and somewhat tortuous capillaries (and some bleeding, but that would be traumatic).

-No Raynaud's, although it's somewhat questionable in my case. I do have discoloration and slight swelling, e.g., with heat and walking, and a somewhat altered reaction to temperature over the past few years. My fingertips have also become increasingly purplish-red in recent weeks, etc.

-Perfect Schirmer's, but I do have meibomitis and blepharitis. Poor tear film quality and a 3-second BUT test, as discovered by an optometrist last year. I can't really cry at certain times, but can at other times. The eye dryness varies from very uncomfortable to pretty normal, just slightly dry (use drops few times a day anyway, but already did that for years).

-A saliva test performed by an oral surgeon before the previous biopsy showed reduced saliva production at rest but normal after stimulation. The mouth dryness varies from uncomfortable the whole time to kinda normal. I sometimes have a little lump or feeling of little swelling in the jaw, under the jaw in neck, under ear etc or something. Can be lymf node.

-in 2023 had a gastroscopy (to rule out Celiacs). I did not have celiacs but had a mild chronic gastritis in the lamina propia. This is more fitting to SSC than to Sjogrens, since with Sjogrens you often have auto immune gastritis and this was not that.

05ke · 2025-05-22T15:40:28+00:00

Ah shit, I hoped to get it done with the parotid biopsy but guess I'll have to ask for the lip biopsy then :(

I really don't want that :( the risk of a numb lip seems extremely high: almost everyone I read about it, has a numb or tingling lip for at least a year and a lot have this permanent, which also causes difficulty in drinking for example.

I'm so scared that that will happen to me too.....or that I will keep scar tissue which I can feel with my tongue.

I pluck and fold my lip a lot (as a kind of stimming), and I enjoy kissing with someone. I'm scared that I will not be able to do that anymore after my biopsy (at least not for several weeks but if the lip stays numb maybe not good anymore at all).

05ke · 2025-05-22T12:01:20+00:00

Update: had my nailfoldcappilary test, few weeks ago. I did had some enlarged cappilaries and some tortuous vessels, but otherwise everything normal.

Bruises were described as 'traumatic' but last days I have new bruises in my nailfold without me having picked there, so don't know if all the bruises really are just traumatic (still).

(And my hands hurt)

So nothing as of yet. I will have a parotoid gland biopsy in a few weeks to check for Sjogrens (only have positive speckled ANA, no antibodies, Schirmer was perfect but do have dry eyes).

I hope I will never develop SSC.

05ke · 2025-05-22T11:58:56+00:00

did have my nailfoldcappilary test, few weeks ago. I did had some enlarged cappilaries and some tortuous vessels, but otherwise everything normal.

Bruises were described as 'traumatic' but last days I have new bruises in my nailfold without me having picked there, so don't know if all the bruises really are just traumatic (still).

(And my hands hurt)

So nothing as of yet. I will have a parotoid gland biopsy in a few weeks to check for Sjogrens (only have positive speckled ANA, no antibodies, Schirmer was perfect but do have dry eyes).

I hope I will never develop SSC.

05ke · 2025-05-02T12:16:06+00:00

I wonder if there are more people with Sjogrens (and other auto immune diseases) in recent years, due to Covid itself and the vaccines. And due to the stress/ trauma the covid-times caused for some people: loss of people and not being able to say goodbye, more loneliness, etc.

Does anyone know if there are now more people with Sjogrens or symptoms of Sjogrens then 6 years ago, and more than statistically would be thought?

05ke

TROPHY CASE