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Biomarker for Diffuse Scleroderma skin has been discovered!


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Is It Pss?


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#1 anonym4444

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Posted 03 January 2008 - 12:57 AM

Hi all,

especially those with PSS and "experience".

First: I'm brandnew here to this forum and I'm from Germany (Munich).
I'm male and 38, have a family with 2 kids (son with 10 and daugther with 8 and I'm the main income provider - in other words, if this runs out to be true, than it's a real mess. (yes, I know, it's unlikely that I have it as young male...but yet, there's lots of things that are highly suspicious and I'm not hypochondric).

First: it has started all of a sudden about 7 month ago after most likely a Yersinia infection on a business trip to South East Asia.
Second: after about 6 weeks (where I mainly had gastro-intestinal problems) I started having tendon problems (hand) and muscle pain (mainly legs) and tingling in the legs. That went away after 2 more weeks again.
After about 8 weeks I had problems with vision (have trouble to see a wide PC sreen totally sharp over more than 4x4 inch small windows).
At about the same time the blood circulation of the hands changed (they got red spots sometimes or stayed very cold and white when touching cold stuff). Also the ears, lips and nose showed signs of this (lips partially blue).

Also my eyes were sore due to lack of fluid (that luckily improved after a month again). However my mouth went drier and drier and after about 4 month I had real trouble at night (I breath through the mouth at night).
After about 3.5 month or so, I noticed that the skin on my hands began to pull against strethching my fingers...
After 4.5 month the fingers began to swell (my ring is a definite proof). Also there were changes in the face (at least I think so).
I sweat at night, am more tired then before, sleep worse (obviously by worrying) have hair loss (diffuse, but never had this before).

Worst of all I have constant grating, creaking and crackling sounds caused by my tendons - expesially of the spine. (also hurts like I constantly have to loosen it when turning / bending sidways). Also other joiints make snapping noises (like the joints of the feet when going up stairs).

Now: I've been to many doctors already (even specialised in scleroderma). However I have NO ANAs and I have NO raynaud (or not yet?). So for them, they clearly rule it out....however there seem to be quite some number of people without ANAs (at least at the beginning and in my case it's 7 month only at most). And there seem to be (especially with PSS) quite a number of people without Raynauds (as it sometimes with PSS seems to develop only later when the skin is thikened more), and this seems to be especially the case with men.

So: to me there are quite a number of very clear indicators which fit (unfortunately only) to PSS. (Sudden onset, tendon problems, creaking, grating, crackling noises, Sicca/Sjoergen symptoms, change of blood circulation in hands, ears, nose, etc, swelling of fingers = puffy fingers, especially in the morning, sone skin thickening of the ring finger (over the joint)). And quite a number of noticable yet minor skin appearance and behaviour changes that certainly only I myself notive so far, but they are there. (in general less flexible skin, changes of the face). And I do have some teleangictasias in the face (well here I'm not certain, if they weren't there before - but the palm of my hands for surer look like some of the pics here on the this site - additionially I do have some above and below my breasts and on the insides of mf feet). In general my skin in the palms of my hand feels like its less flexible, burns sometimes at night and feels like it's stretched and woody. On the feet (inside and outside) it's very thin and feels harder (and behaves like it's less flexible).

Now for about a few days I do think, that also my feet feel sometimes swollen (can't say for sure here). But what worries me even more - I have a patch of skin that for no reason feels like double as thick (lss flexible too) over the talus bone (top of the foot close to where it joins the leg - sorry, but it's hard to have the correct english term at hand...). Now I do NOT think, this is swelling...(it's half an inch by an inch so far), slightly red.

Is that how "skin thikening" starts in PSS - who of the PSS patients have observed a similar start of skin thickening? Or would skin thickening be a more generalized process affecting a whole foot or hand?

Sorry about the long report...maybe somebody can give me some advice...I have one more appointment (finally) with a Unversity Rheumatologist in a few days. Hopefully he has more clues.

Thanks,
K.

#2 Kamlesh

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Posted 03 January 2008 - 11:48 AM

Hi K,

My intention is not to scare you, but I find many similarities in my experience. I was working in Southeast Asia, particularly in India for a year. When I left India, I started getting severe fever and malaria type of symptoms. I was ruled out negative for Malaria, TB, or any other infectious disease. After a year later, I was officially diagnosed with Scleroderma. According to the doctors, my scleroderma was triggered through environment/pollution. I will get high fever every 4-6 weeks for almost two years. I was on Cellcept for two years and I am OK now.
Kind regards,

Kamlesh


#3 Sam

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Posted 03 January 2008 - 04:08 PM

K, I am no doctor but it takes awhile to get diagnosis with Sclero. But it does sound like you have it. But agian I am not a doctor. Just listen to what they have to say and make sure you keep them(doctors) updated. Make sure you tell them everything that happens. I'm sorry I really can't help and good luck., Sam
Sam

#4 aniwallar

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Posted 03 January 2008 - 06:07 PM

Dear K:

I see you have many questions about your own body. You know your body and it is true that even sometimes no one can see the changes, we sure can.
Not everyone with scleroderma has a possitive ANA, so don't just go with that and don't let the doctors just go with that either. You mention you don't have Raynauds and I'm not a doctor but it sure sounds like. Mine started with just some red and white color here and there and my fingers will get very cold.
It is importatnt to know that NOT eveyone with Raynauds has or will develope scleroderma.
I guess what I want to tell you with all this is to continue seeing the doctor. Also ask for tests and make sure you tell the doctor that your fingers (or face) doesn't look th same. My doctor used to tell me that he couldn't see anything wrong with my hands but I knew they were not the same, unfortunately they can see the difference now.
There are several medications that could help you. Don't stress over this thinking that you are the main source of incom in your house. Most people do very well with this condition (if this is what you got).
Please, keep us posted and ask any questions, in fact, ask many questions...

Stay warm,

Ani

#5 jefa

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Posted 03 January 2008 - 11:11 PM

Hi, K, and welcome to the forums. I am sorry you are so stressed at the moment, but it is understandable. You have found a good place for information and support while you work out your diagnosis with your doctors. I just did a search on Yersinia and one thing I found is that infection is sometimes followed by a reactive inflammatory arthritis which would explain a lot of the symptoms you have been having. My own symptoms started shortly after a severe upper respiratory infection and my doctors thought my inflammatory arthritis was reactive, but reactive arthritis generally runs its course after a period, sometimes as long as 18 months. Mine has continued for four years. If it does transpire that you have scleroderma, then it does not necessarily mean that you won't be able to continue to support your family and live a full and productive life as many forum members do. It is important either way to try to keep yourself as free from stress as possible. You may be able to find some help in our page on Coping Strategies. Do keep us posted on your progress with doctors and feel free to ask any questions and jump into those discussions that interest you.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#6 Sweet

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Posted 04 January 2008 - 03:22 AM

Good Morning K,

...and welcome to the Sclero Forums. You sound well informed about the goings on of your body. Being able to see/feel the changes in your body and then being able to communicate those changes to a provider is really important. Sounds like you have that down. Keep a running list of what is going on with you and continue to see doctors until you feel you have one that understands what's going on and supports you.

I'm really sorry you are dealing with so much at one time and in what appears to be fast progression.

We're here for you, hang in there my friend.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 anonym4444

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Posted 05 January 2008 - 11:43 PM

Hi Pamela and the others

thanks to you for the welcome and advice.

I certainly do hope, that you are wrong in what you call fast progression....nevertheless, I know what you mean and yes, 7 month is quick - it was a very sudden onset too.

So far I being able to observe and describe it has not realy been an advantage at the doctors visists.

a) you quickly have the stamp of being hypochondric on your forehead (I am not at all)

B) Scleroderma seems to be even more neglected in Germany than in the US - very few specialists and even those look for the most prominent signs only (Raynaud, ANA, band of the tongue) - are those OK, they are not even interested in the rest it seems. (e.g. the tendon problems only exist on english spoke websites...interesting how diseases have localy different symptoms :-)

c) it is economically not that interesting to treat scleroderma...I mean if half the people in an economy eat to much fat, you need to treat heart problems else your economy falls apart...but if 10 out of a million (and the majority female in addition) get scleroderma then it is OK to not really do much about it than saying: can't really treat...

d) treatment, diagnosis and therapy (e.g. stem cell) seems to be much more advanced in the US as opposed to Germany - here it is almost like one is left to his own fate - there is NOT even a center like John Hopkins...they just opened one now for whole of Europe (in Switzerland though, where e.g. German health insurance doesn't pay)...I have lived 7 years in California - so be assured as much as US people complain about their health system - if you are insured at all, it is not all that bad as you may think and the grass is not so much greener in Germany which is at least thought to be much better on that front.

Well, I'll see what the Munich University Rheumatologist thinks in a few days and keep you posted for sure. I will need quite some help - and even that is slim here in Germany - as the support groups are not that big (less PC users amongst the typical age group of scleroderma patients than in the US and in general smaller population that speaks German...so the support is slim too). Luckily I was in the US long enough to exploit on that advantage of being able to communicate reasonably well (at least I think :-), so that people understand me.

Thanks again and keep you posted.

#8 jefa

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Posted 08 January 2008 - 11:56 PM

As a transplant from California to Scotland, so many of your points ring true. Still, the web gives us the opportunity to close many of those communication gaps. Please do keep us posted on your Munich rheumatology appointment. I look forward to reading more.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)