Scleroderma fear

[lazarus16]

Hi everyone,

I managed to keep my health anxiety at bay but apparently all good things must come to an end.

For the last couple of months I have been consumed by fear of scleroderma (systemic sclerosis).

The symptoms I have noticed so far include the following:
- a single patch of pale skin on the back of the upper part of my left arm.It is especially visible in natural daylight but it definitely is hypopigmented. Unfortunately, the hypopigmentation seems to spare the areas around hair follicles which is a characteristic of the kind of hypopigmentation occurring in scleroderma
- 4 whiteish/pinkish/transparent/hypopigmented (I'm sorry if this sounds bizarre but I really find it hard to explain their appearance) scar-like dots on the skin of my right hand and similar 2 dots on the inner side of my right elbow. They look a bit like the lesions of idiopathic guttate hypomelanosis (a benign condition) but my dermatologist does not believe this is what they are, since they usually affect people in their 40s (I'm 24) and typically involve forearms and shins. However, she did not provide a definitive diagnosis either for them or the pale patch on my upper arm so I feel like I'm stuck in a limbo
- several telangiectasias (blanchable pink or red dots) on both my hands
- redness around the base of my fingernails
- tiny red dot on the cuticle of my left middle finger. It does look like a tiny haemorrhage seen in patients with connective tissue diseases
- a whole array of neurological symptoms that have been occurring for the last three years (twitching muscles all over body, droopy eyelid, perceived trouble swallowing, perceived weakness in right arm and right leg and many more), although I don't believe they are related to the ones listed above and I accept anxiety and stress as their explanation

I don't have Raynaud's, and also don't think I have any skin hardening. My recent complete blood count and urine sample test came back normal but they're unfortunately of no value in diagnosing scleroderma.

I have a very difficult time dealing with the symptoms, especially as some of them (e.g. the blood dot on cuticle) appeared only after I found out what they were, so there is no way they had been present before or I'm imagining it.

I'm doing my best to maintain some composure but, still being quite young, I really fear the impact that the potential diagnosis might have on my life. I have an awful lot to live for - my parents; my brother, who has recently overcome his depression and is finally living the life he deserves; my girlfriend, who is the sweetest and kindest person under the sun; dozens of good people that I am honoured to be able to call my friends.

I apologise for being pessimistic.

[thebluerecluse]

Can sympathize, I have a few of the symptoms you've listed such as red dots on hands that have worried me about connective tissue disease in the past. Have had them since I was a child though and have never been diagnosed with anything. Redness around your fingernails is just something some people have I'm pretty sure.

I DO have Raynaud's (I think) so have been struggling with scleroderma and other auto-immune issues but if you ask your doctor to get you tested for ANAs that should clear it up. Had mine tested and came back negative.

Have heard from multiple people that if you had an auto-immune condition you would feel it, and for a male to get it would be even less likely.

If you're like me, fair skinned and no tan, the little idiosyncracies everyone gets on their skin are just more noticeable.

[lazarus16]

Thank you for your kind words, I really appreciate it.

It's great that your ANA was negative!

I've finally reached my lowest point in a long time and booked an appointment with a rheumatologist today in the afternoon. I'm paying out of my own pocket since if you use public healthcare in Poland, you first have to see your GP, convince him or her to give you a referral, and after that you still have to wait 3-4 months to see the specialists as the waiting lists are very long.

I know the odds are in my favour but I just don't have the ability to reason with myself anymore. In the past, I had the "standard" fears that many of us here go through, i.e. MS, ALS, numerous types of cancer etc., but this time it all seems too real.

The scariest thing is that I have no source of consolation whatsoever. When I worried about twitching muscles, perceived weakness in my limbs, paresthesias etc., it was enough to just type those words in the search engine of this board and see that there were hundreds of people like myself who had gone through the same things and ended up just fine. However, this is not the case anymore and... well, I'm scared. I'm just so awfully scared.

[Michelle1]

Hi I too had this fear and still do to some extent. I'd never even heard of scleroderma until I went to the Drs feeling extremely tired with aching bones and joints feeling like I had flu every day. They did ANA blood test and it came back positive 1/80 nuclear pattern. So of course I googled what 1/80 and the different patterns meant. 1/80 was a positive reading but a low positive the higher the second number the more likely you have an auto immune condition. The pattern I had was likely to be scleroderma so of course I googled it and straight away thought I don't have that as I don't have hard skin anywhere. However I did have some little red dots on my body and a few under my eyes. Then I started with GI issues (stomach and bowel) which is common with scleroderma and had an urgency to urinate more often and was diagnosed with an overactive bladder. All these incidental things made me more and more focused on scleroderma. I was referred to a rhumatologist who said I definitely didn't have lupus as the blood tests for that were negative and unlikely to be scleroderma as I had no hardening of the skin. I do have acid reflux and sore nail beds so still a little part of me is worried I have it just not the hard skin.
In the end I had to trust the Specailist and try to relax about it.
I recently had two more ANA blood tests which are now negative so all those months of worrying might well of been for nothing (wish I hadn't googled the blood results initially).
Now diagnosed with fibromyalgia. Please try not to worry and do come back and let us all know how you get on with the Specailist x

[thebluerecluse]

Yes twitching muscles and perceived weakness is probably something most people here experience. ALS and MS worries are almost the tutorial for health anxiety. You're definitely not alone there.

As for the scleroderma I think I read the definition of how it presents is the hard, raised skin patches - which it sounds like you dont have, I think 70% have Raynaud's - which you don't have, and also a positive ANA result, which I doubt you have. Just keep repeating that and think positive. It's hard I know.

Do you have any close family you can talk to? I find that helps a lot.

[lazarus16]

Well, I did visit the rheumathologist. She said she was positive I do not have a connective tissue disease but advised me to have a capillaroscopy done. Should it reveal some abnormalities, we will move on to blood tests for antibodies.

I managed to schedule the capillaroscopy (it's a test where tiny capillaries in your nail folds are viewed under a microscope to check whether there are abnormally large vessels) for next Tuesday. Until then, I have to try and not lose my mind, which is going to be hard as I discovered a new telangiectasia on my pinky finger a few hours ago and I haven't eaten anything for 36 hours.

[lazarus16]

Just checking in.

My capillaroscopy was rescheduled from Tuesday to today. In fact, I just had it done an hour ago.

Long story short, it came back normal :) There were no changes characteristic of scleroderma, and the red dot on my cuticle did turn out to be a haemorrhage but it stems from a totally normal-looking capillary and is just an incidental infarct (in scleroderma, haemorrhages are produced by the so-called mega capillaries).

The doctor said I could still get a blood test for ANA if I needed further reassurance but I think I'll just let it go for now, eat my first decent dinner in a week and have a walk.

By the way: the doctor asked my whether I had any medical education, as that was the first time he had encountered a patient with such a thorough knowledge of rheumatic diseases. Well, I never imagined I would hear this type of a compliment but I accept it graciously anyway :)