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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 anonym4444

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Posted 11 January 2008 - 11:59 PM

Hi,

so I've been to Munich University and have seen a Rheumatologist. She did take some time to check me out and listen to my story over the last 8 month of symptoms and was very much interested in the details. However didn't do an ultrasound in the end as I didn't complain about swollen joints (I don't have them and as I'm NOT a hychondric I won't complain about stuff I don't have...:-).

She was quite puzzled as much as the doctors before as on one hand I have some stuff others don't have (at least not right away or not at all) and I don't have stuff that others normally have in the beginning. (don't have Raynaud, don't have ANAs, don't have thick tongue band, but DO have tendon problems especially in the spine area and do have gastro-intestinal problems, vision problems, teleangictasias on the chest and palm of my hands and side of my feet, skin thickening patches on the feet, strange more unflexible behaviour of skin on hands, face and feet and swollen puffy finges - although difficult to see for others, slight hair loss, sicca=dry mouth)

So she didn't really say much and left it to the blood tests - have an appointment now in 4 weeks. But as all the blood tests so far didn't show anyhting, there's little hope, that this will shed more light on it. All the Rheumafactors and the ANAs and ENA so far tested showed neg. However: they do claim they have a better lab (supposedly the best in Germany...don't know if that's true) and find still 3% more patients than other labs that normal doctors use. We'll see.

I certainly forgot (or didn't dare to mention as I myself am not so sure) about the skin thickened patch to show it to her...but the more I investigate it myself I'm sure, it's not just something which I got from iceskating boots that I used recently - the skin really is thicker there, it behaves less flexible, it is slightly reded (doesn't hurt at all though), feels more rough on the surface and if pulled or pushed behaves different then the surrounding skin (or the comparison on the other foot). But, nobody so far could tell me, if skin thickening really can start that way (I don't have this ring around the patches that they describe for Morphea). But as it's most likely PSS in my case I would have expected a progressive symmetric slow thickening of e.g. both feet over some time and not a pretty rapic almost sudden thickening of a small area of skin of one foot (1/2 inch by 1 inch at most and the second spot half the size). But also just by visually comparing my feet I initially did see it (that's how I saw it in the first place). The skin is proably twice as thick there.

Well, still many questions....

It would be good to hear some experiences also from some of you, "what" to expect in terms of being able to continue working - a) I love my job and I got the luck to have a wonderful one only 5 mins away by bike and B) it sure is easier to life a normal life with the money it earns - Munich is comparable to Sillicon Valley in terms of cost for housing, but earns only half of it in the same job to begin with even in my chip industry job (I was 7 years in the Bay Area, so I can truly compare). It sure would be very tough for the kids if my wife had to go seek a full time job as her's simply doesn't nearly pay as well as mine (nutritionist - very badly paid here). And for the kids it would be horrible if we had to move once more now that they finally got over the culture shock of coming back from sunny California, where they were born and grew up for the first part of their lifes. After 5 years being back, they are happy again and now this. We certainly could move to our parents in the "Hinterland"...but ...then we have a similar (even more shocking) experience again and we sure don't want that (and the Rheuma specialists are also far away then). Plus my wife has even more trouble finding some paying job there and for me it would mean 1.5 hours commute with trains as long as I can still work. And as we worked quite hard to get our house here and make it into something we all love and like, it would also mean giving up a lot which we worked for for years and start all over again. Plus we'd loose all our friends and even more so the kids, which is hard of you had that experience already at least twice in your life (going to CA and coming back).

So it would be good to hear from those of you that have PSS (the diffuse form) - from all the research I have done so far, mine sounds (if at all) like the diffuse form of PSS (no Raynaud at the beginning for the first year or not at all with PSS as male). And also the swollen fingers and tendon involvement and sudden onset are pointing me in that direction if at all.

#2 Sweet

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Posted 12 January 2008 - 06:21 AM

Hi

Thanks for the update from your appt. Please share your lab results once they come in. You mentioned you forgot to show the doctor your thick skin patches. One thing that might help you is to keep a running list of complaints or things you want to share with the doctor and then whip that list out at the appt. That's what I do.

As far as work goes, that's hard to predict. Everyone is different, but it seems to me that by and far the majority of people continue to work for quite sometime. I wish you the best!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Snowbird

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Posted 12 January 2008 - 10:56 AM

Hi

This disease is so difficult in the beginning that it is really hard to make good decisions, especially with any disease weighing heavily on your mind. Your worries are understandable for sure, but try, if you can, to do one thing, one day at a time. I know it's tough when you know what you have but then again it's pretty tough when you don't know what you have because your mind can wander all over the place. Rare diseases are so hard to diagnose and with your symptoms, it sounds like it might take a little while for the doctors to do that. When the time comes, I'm sure you will know in your heart what to do for your family, try not to stress yourself about it for now if you can.

I have Limited SS and do not have Raynauds (at least, not yet) although I am very sensitive to cold temperatures in my hands and my feet (I do not turn white/blue). I'm fairly new here too and I had no idea that no Raynaud's in the beginning could point to diffuse...am I understanding that right?

I agree with Sweet on work too...everyone is different...so it is really hard to predict. Good luck and I hope you keep us updated too when you get your test results.
Sending good wishes your way!

#4 anonym4444

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Posted 12 January 2008 - 11:19 AM

Hi,

I don't want to scare you...but indeed I did read on an American website I guess (and on some German ones too...but less specific there), that for most of the limited scleroderma patients Raynaud is sometimes years ahead and almost 100% have it, wheras with diffuse PSS it can happen up to a year after the first symptoms (which can be sudden there) and in that case only about 70% have it.

But: with this disease there's very often also conflicting information, seem to be no real databases from the past and very often sites contradict each other or are very vague and diffuse in what they tell...so it just seemed like one of the most specific ones and you certainly always look for what "matches" best (in my case it does). For sure, males seem to have less Raynaud (that's what I found on many sites) and for sure the total of Raynaud seems to be somewhere around 90%. But as the diffuse form makes up only 20% of the total patients according to some sites, than with a bit of mathmatics you'd come to the conclusion, that almost no men has Raynaud. (I'm an engineer, so I very often get puzzled by the inaccurate data...sorry).

I hope I didn't mix the terminologies (even the classification and terminology is somewhat different between Germany and US and other english spoken countries).

Well, I will try to take your advice (indeed I kind of do just that for quite a while, as I can't do anything else). In my heart I'm pretty certain, that I've got it - even if it takes a while to prove it (my fingers feel stiff and are swolen - there are not too many diseases which fit with the other symptoms too). Interestingly I also found a doctor thesis from a German dentist - it was so far the most fitting describing the onset of my symptoms (like vision problems, sicca, too big tongue etc). Unfortunately only in German.
So what I do is certainly life a bit different (with such a knowledge you do life different, no doubt). So I actually don't always "shift" stuff in front of me, but really "do" it and I do it "clean" (just cleaning up computer stuff from 15 years so that it's finally done properly - be it pictures or documents). And I certainly try to spend time with the kids as much as I can (can't be wrong in either case).

CU,
K.

#5 summer

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Posted 15 January 2008 - 12:17 AM

Hi,

While I was reading your post I have noticed that I have a few of your symptoms.
I was diagnosed as having Limited/Crest Scleroderma 10 months ago, before any of my symptoms came about, I did notice that I also have a round piece of thickened skin on one of my feet. To look at it, it looks like it is wrinkled hard skin, it used to go red at times but is now normal skin colour. If I pinch that area it feels thick and numb. I have had this for nearly two years, on my other foot I don't have any hard patches of skin, but on the top of my foot there is an extensive like wrinkled appearance, as though It might turn like the other foot.

I also never had Raynauds for years, I was diagnosed in feb 07 with scleroderma, then had my first Raynauds attack on my feet in May o7. My hands only turn cold and white, but haven't change to the blue coloour as yet. I have a positive ANA and a positive AntiCentromere pattern. The Scleroderma is progressing internally at the moment.

Take care
Celia