Scleroderma & Raynaud's UK (SRUK)
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Facial changes on half of my face, neuro changes, high antibodies in 08

Hello. I have a question if anyone could offer input. I have been diagnosed with Ehlers Danlos Syndrome, a connective tissue disorder affecting collagen, however it doesn't explain why I have felt like my face has been morphing lately. Neurologists and my opthamologist have noted that my left pupil is VERY slow to react to light and I have multiple progessive neurological changes as well. Multiple neuro's tell me they have no explanation. Until recently I thought it was my right side of my face that was drooping, but now I wonder if it could be the left side that is being lifted up or pinched.

When going through old medical records just obtained from my PCP I discovered that a fall 2008 lab test showed I had a positive ANA, high SED rate,high TSH (later have tested borderline low), high C-reactive, and high Antiscleroderma-70 antibodies. I had no idea what antiscleroderma-70 antibodies were. My lab result was 133 and positive was considered anything over 120 Au/ml. In reading about scleroderma, en coup de sabre and diffuse systemic scleroderma I felt like I was reading about myself. Now, granted I have LOTS of secondary conditions that could explain away lots of things, but the face changes have been bothering me and this is something that finally makes sense. I have had little colorless bumps show up on the left side of my face in the last 18-24 months. I look in the mirror and I don't look like "me." Something is off. I thought it was the right side, but others have pointed out lately that the left side looks like there is less fat, less laugh lines, etc.

Would anyone care to offer their opinion if they notice any hemitrophy going on? I do have alopecia on the left side of my hairline too where the hairline is receding above my eyebrow. My hair has been falling out for almost a year and I have been under lots of stress so my PCP has been telling me not to worry about it. I already have so many "rare" conditions I would hate to look like a hypochondriac, but an explanation for my face changes would be nice. Any input appreciated. Thanks. Then and now Hair loss on left side (and I have THICK hair)

5 Replies

I know the feeling about being afraid to list all of your 'stuff' for fear of looking like a hypo, I don't for that very reason.

Were you flushed when you took that photo? The first thing that stuck me is lupus.

The second thing is a weak Bell's Palsy. You could have some autoimmune thing going that includes or excludes lupus, I did, and lost a ton of hair. Some grew back, most didn't. Cause? Undiagnosed autoimmune of some sort that caused alopecia or just alopecia itself. Alopecia is NOT caused by major stress, it's caused by an autoimmune attack of the hair folicle. I didn't know that until the dermatologist told me.

I am hypothyroid, have you been checked for that? That can make your hair fall out, in fact, it's such a potent gland that it can do just about anything it feels like doing. Makes me gain weight, lose weight, heart arrythmias, dry skin, super dry skin, I can't even think of it all. Nasty to deal with, tho, for sure & mine started when I was 14. Look up thyroid disease or endocrine glands.

I've been told it could be making the elasticity of the left side of my face get tighter, who knows. Could be, maybe not. Where it's the tightest, I can't cry. Haven't been able to for a year and a half, but only one eye. I have negative ANA and tested negative for Sjogren's. That means I'm on my own. It just goes to show how crazy the body can be--but I guess you know that, don't you?

That's all I have to say which isn't much. All I know is the more I know, the less I know. There must be someone brilliant on here, it's just not me. Sorry.

Hang in there, I'm hanging with you.


As of 2 years ago I tested positive for lupus, but only at a 1:40 titer so rheumy said that was considered insignificant and was considered negative. So, no lupus diagnosis.

Every woman on both sides of my family is hypothyroid BUT me. I have been borderline low at times, but at the time of this high sclroderma test I had high TSH. My morning temps are low. They used to run 95._ back in 08. Now they were 98.5 a month ago. Now they are 98,8. So good chance I am hypothyroid and having adrenal issues as well. Maybe Hashimoto's? My mom was hypothyroid and I have been asking about being hypo for years. No dice from PCP on treating for hypo though.

As for being flush in the picture. if you look at the picture of me on the left where I was 18 I look the same so now I'm really not flushing much in the current picture. Here is a picture of me flushing I also have a mast cell disorder, either mast cell activation disorder or possibly mastocytosis. Waiting to see an expert in that realm too. I also have POTS (positional orthostatic tachycardia syndrome), neurocardiogenic syncope, bilateral thoracic outlet syndrome, vit D deficiency, low B12, IBS, GERD, migraines, osteoarthritis, degenerative disc disease, undiagnosed dural ectasia, and highly suspected tethered cord and cranial/atlantialaxial instability. I go back to see the neurosurgeon in December to follow up on the imaging he had done.

So, lots of reasons for my body to have issues, but no real reason for half of my face to LOOK different or for the little papule looking things under my skin that are on my face. I have them on my feet when I stand but that's from the fat squeezing thru the loose connective tissue when I stand. It's pretty common in Ehlers Danlos Syndrome folks.

So, my body flushes for lots of reasons, but I wasn't really flushed in the picture I posted. People have mentioned recently (and I hadn't noticed) that my left side stays more flushed than the right. All of this makes me wonder if scleroderma could also be in play. The left eye also doesn't really react to light. I had to shine a 4 cell maglite in it and it took 10 or 15 seconds before it contracted at all. The last neuro looked at it a few times, but then offered no opinion besides "I don't know." Of course the odds of me having what I already have are astronomical so what's one more? The blood work just had me going hmmm. At the time I had high C-reactive, positive ANA, high SED rate, and the anti-scleroderma antibodies that were high. Oh, and thyroid antibodies too, but they weren't "high", but they were there.

My body is not happy that is for sure. Oh, here IS me flushed. This is because I got in a bath that was a little too hot when I was off some of my meds last week getting ready for a colonoscopy (so my body was extra touch) I broke out in REALLY itchy hives instantly all across my back and chest and my face flushed as it usually does.


First let me start by saying you write as if you have medical training,very good! I have scleroderma, diagnosed in 2000,with a speckled ANA. First dr. said I had carpal tunnel, then hepatitas, then lupus. It took his wife, who was his PA to tell him what was wrong with me. I have the CREST scleroderma but a little more aggressive. But I have been doing better in the past 3-4 years. I am 53 and can tell as my estrogen reduces so does the skin involvement. My right side has always been more affected than the left side. When first diagnosed my skin hurt, my face became tight, forehead sore, nose thinned, lips drawn,this really gives my dentist a terrible time. I was not familiar with your condition but I looked it up. As a child I was double jointed,very athletic, the skin on my chest has always been so transparent you can see very pronounced veins. Seems like these diseases have some common ground. As with some sclero I have telangectasias all over my face,I hate having to wear make-up all the time. When all this started I was super depressed,I now take Zoloft which really helps. Do you use any seratonin lifters?Wish I could be more help, but nice to cyber talk.



I was diagnosed with systemic sclerosis 14 years ago (wehoo!!), for the last 7 years the red spots (telangestacia) on my face, mainly my cheeks are becoming more prominent in colour as well as being raised. the only person who gets excited about their presence is my consultant as apparently these are a sign of late stage scleroderma!! He also get excited by the hair growth on my arms which I think looks like a grizzly bear !

My mouth has lots of quite deep lines around it now also, as well as I have no pigmentation around the end of the bone on my nose ! (I forgot to mention how beautiful I am, now I have scleroderma lol). As well as, I used to have lovely thick shiny hair, it is now thin and limp - but thank goodness I still have some hair left, although by the amount which I shed, this is most surprising !

Over the last 3 weeks I have been experiencing pain from my right ear / jaw joint going all down my face. I spent the first week on amoxycillin which slightly eased the pain, the second week on a stronger antibiotic which almost took the pain away (shame I didnt get that the 1st week instead of having to take my named patient only pain killers every 3 hours and spent the week reaching for the moon!). This week I am antibiotic free with a low level of discomfort on that side of my face / ear. I can not go out as the cold temperature makes it worse. The denstist says that I have pulled the muscle going from my jaw to my ear and eventually it will heal with soft foods and not so much talking ! The GP thinks that I have got cold in my ear which started an infection hence the pain. Wehoo every day certainly is different with this challenge!

In relation to the red spots and ulcers which I get from the Raynauds I have been using a creme made from the papaya fruit! A friend told me about it a month ago, i have been using it once a day on my face, ulcers and hands and i can not believe the difference ! - the telangestacia on my face does not look as angry and my ulcers have almost healed ! Amazing results ! Its called PawPaw cream from McArthurs Natural Products (they have a website) its not avail in UK yet but you can order it online to the UK.

i have not taken any sunshine in a tablet from throughout the 14 year long road - Ive taken enough tablets / chemicals courtesy of the autoimmune system going awol ! without adding more to that list of side effects! I do believe that the mental ascpect of this condition, as well as any condition is sooooooo important for recovery and easing of the symptoms ! I listen to on line which always raises my outlook as well as, hoping each day that I will feel better tomorrow, if I respect what my body is telling me today ! I hope my coping strategy helps anyone reading this ! and it always makes me smile to be described 'a medical miracle' by one of the leading international medical professionals of scleroderma !


Hi, I too am having a lot of problems with my face, jaw pain, eye problems and the rest I was very interested in the pap paw cream that you suggested I have found a mail order place in the uk, would you tell me if this is the right product as I am willing to try anything . Feeling very down and pissed and off atm. Helen


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