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anonym4444

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  1. Hi, mainly the hands and somewhat the feet. Blisters were only on the side of the fingers...hardening was pretty much along the sides of the fingers, and the insides...dry skin on outsides. Palms of hands also drie and harder. Worst affected are the tips of the fingers...almost like hard skin below a smooth and unpenetrable top...no liquid in, no liquid out. Face is somewhat drier in general but not affected. (skin on scalp sometimes also shows scars which have no explanation...). Itching I had sometimes on more parts of my body...but as I had this from time to time always in my life and it never was really bad, and came and went, I never connected this to what was going on. Now in aftermath I remember that I had a 4 days itch attack about 1.5 years ago in summer after an antibiotic treatment due to wisdom tooth operation. But I simply thought it was a reaction due to antibiotics back then...that one affected the whole body. So: now I am left to try to treat the hand eczema and have mixed feelings...on one hand totally happy, on the other hand it also affects those instruments of my body that I use most in my job apart from my brain. And it is chronic too and difficult to treat...so I have to see how this will continue....definitely it will not be life threatening. And most likely it will only impair my hands abilities and not destroy them. I am a bit angry about lots of doctors (even general phyisicians, dermatologists) who also saw this and as this is pretty common in the beginning phase they could have know about it...and should have. The blisters were at least visible more than 1 year ago. And they alone should have rung a bell....Anyway too late now to worry about this...one cannot change the past, but only the future. K.
  2. Hi to all, I finally found a dermatologist who was a former sclero specialist in a university and who opened a new office in town. She only takes self paying patients though....but she takes her time, is thorough and what I found, very competent. She without a doubt diagnosed the eczema that another doctor had done before, but much more arrogant and less convincing. Now, she took the time to go through my concerns and explained why she thought it is obvious and why she did not think it can be anything like sclero. And low and behold I googled and yes, there is a form of neurodermatitis (is it the same word in English) which strikes especially male adults and which leads to small blisters at first between the fingers (had those, and though of them as suspicious...but never too much about it) and then continues with hardening, thickening of skin at the insides or outside of the hands...and ends in totally dry, cracking skin especially on the tips, insides and outsides. And then I finally remembered that also some of my family members had trouble with it and that even I had in my youth some minor problems with it....so it all started finally fitting. As she was however a doctor who only does "alternative healing" I wanted some conventional doctor to confirm it and yes, the normal university dermatologist did. Why the diagnostic clinic did not diagnose it in summer...I do not know...they saw some of the obvious signs and just ruled out sclero - collagenous disease but did not suggest to treat the obvious hand eczema. If worst comes to worst it can still be Psoriasis (would fit better to some of my other problems like spine and eye dryness), as both can affect the hands in this way. The check for Neurodermatitis or Psoriasis will be done later on, as the treatment is anyhow the same ...cortisone cream for now...we will see, if it can stop or reverse the changes....if caught early enough, it is possible...but also a difficult, chronic treatment... My index fingertip by now is completely dry, and smooth and feels like many layers of thin skin with air in between or like dry soil (in a forest). The superglue feeling from spring has changed to a much thicker layer of skin in between nerves and objects to touch. So to all those with similar changes...have this checked out and take it into consideration...and do not give up...in my case I could have had this detected at least half a year or even a year earlier had the doctors reacted of had I found the right pictures (as the itching blisters on the side of the fingers would have been soooo characteristic, that I would have immediately raised them in their importance...however I neglected them...and even those who I told about them or saw them did not react). So: tell your doctors everything, even small details you may not think is important to the diagnosis you are seeking...but it may be important for another one that you really have. Also change doctors from time to time (in my case only a dermatologist had a chance of reacting, not a rheumatologist)...or better go into a place, where you have many at the same time in one place. (but even that in my case did not help...but got me at least treated for another unknown infection as reported earlier, which was probably also important and maybe one of the triggers of the hand eczema). Thanks for all the support, encouragement, reading and hints here, I am certainly happy not to have sclero...even if the current road is also a bumpy and long one and may not really lead to an end soon...but at least it is way less serious and allows most likely to continue working, even if with a lot of problems. I will never forget those 1.5 years of sclero experience in my case...and have learned a lot about a lot of pretty bad diseases. (not just sclero, but related ones) I wish all of you all the best, keep up hope for a cure. I for sure will cross my fingers for all of you. May the scientists find the cause and treatment of such diseases soon. One more out there who is unaffected who will spread the word with you. And for those of you, still looking for diagnosis...keep hope up, that there are other things (I thought there is no other disease anymore that could cause such skin symptoms, and yet there was...and I never accidentally found it being on Google for quite some time)...so keep your mind open for other possibilities and trust the doctors if they tell you for the fifth time, no it can not be...maybe it really is something else and you miss to treat that one early enough by too much insisting it is what you think it looks like (like I did). Also do not necessarily trust, that if a sclero doctor rules out this one, that he tells you the other one, that it really is...go for another doctor and show him the symptoms (all of them) and let him guess by himself.... manny...ez62 and some others which had similar stuff and no diagnosis...there is HOPE it is not what you think it is! My example shows it. Yes, hand eczema caused by neurodermatitis or psoriasis can be pretty hard to treat as well and chronic...but they are both not at all as serious as scleroderma is. So do not give up hope yet. CU, K.
  3. Hi, I was the one describing it as superglue feeling. Well it is interesting to see, that most of the descriptions match. The insides clearly are much more leathery and dry feeling and some fingers are more affected than others (some slightly swollen, others sometimes really hard on the tips and if you put them in water, the hard part (I bet skin all the way to the bone rather than normal fatty stuff), strangely feels like rubber when pushed and wet). Fingerprint almost gone and shiny on some fingertips and the normal lines nor really feelable but embedded deeper in the skin still shining through. If pushed with a needle, it squeezes in a whole area and not just a small part and it bounces back slowly, and if dry the dent, that is caused by the needle almost snaps back. Like the safety part of shoes of handymans that are reinforced in the tip to protect that toes...that's pretty much how it feels in the fingertips of the affected fingers....the other less affected, still feel very dry on the insides, outsides and even in between...strange dry and sticky, hard smooth feeling, very different from normal. Still not diagnosed though....next week is another checkup to see what my recent treatment for the bug that supposedly caused this too...has had effect.....however all clinics have announced that they want to strike....hopefully not another 2 month for the next appointment if they do....we will see. But from all I can read from most of you, mine is pretty comparable and that is, why I am pretty sure (among other things) that this is a collagen disease...simply too many skin changes that nothing else can cause in that extent. No Raynaud's though, no ANA, slight CRP (supposedly caused by the bug they found). K.
  4. Hi to all, Yes, you are right, once you start looking you certainly get drawn down and find even more...but some things simply are objectively there and there I have to agree to ez62, some of us would have something better to do than being on any forum. Honestly in my life until 1.5 years ago I was never on any health forum...it was simply not even on my radar that anything would ever happen to me healthwise and I was the last to see a doctor for any normal illness or to stay home (even now I haven't changed that so far as I still can cope very well with it). So rest assured, at least in my case, that I am no hypochondriac and no overly emotional person (yes, that whole process has also drawn me down quite a bit), but yet as a man and with technical profession (heavily technical) you can be sure, that I am not fitting that type of person. It is great to get all the support here and while I also still hope that it will be something less than scleroderma (even mixed seems better) I also know at the same time that it will be something of that sort. I am smart enough and have read enough to connect the dots of it together. And it is also clear that it is hard to see in this phase ...that's why I am a bit annoyed why especially the specialists do not even go another route and simply do a biopsy in such a case. In my case I have at least one fingertip where I would start as doctor, if a patient told me my story and where he also saw that something seems to be wrong. As you say it takes quite long to detect...even longer for women (I have read as they get even more put in the emotional drawer...than men who normally only show up with doctors once there is something wrong). I mean, my belief is, that this illness could be detected much earlier if doctors watched it earlier and closer...to me it remains a mystery how anybody can wait that long (or doctors ignore that long) the signs. Some of them do not show over night and in some of the stories here (and with myself) I really have to ask how ignorant a doctor must be to ignore it that long. Georgette, I read your article and wanted to tell you the same...on any Internet Explorer there is the 100% button on the lower right hand corner and you can change it. I guess you can even change the default setting in the options (or it remembers it next time). But even more important: Windows XP and Vista offer a ton of help for handicapped people (also for pressing two buttons simultaneously there is serializing available for people that should have problems pressing two buttons at once....that tip just for others out there). If you go under the system control (start button and then go to system control) then you should find at least one icon for simplified operation for handicapped people. One thing you can change is a magnifying glass or you can also turn on speech output and even input some commands. Also you can switch on a screen keyboard to type using the mouse on a screen keyboard. So modern technology has done a lot to help. That is something that CAN BE helped.... K
  5. Hi, thanks for your reply. I hope you are right, but then again I do not think it is quite so simple a solution. Clearly I wouldn't be the first where this takes a while...according to some investigations it takes I guess more than 2.4 years for diagnosis starting with first symptoms...and for some people first symptoms even start before they are conciously noticing them as such. For me it started promptly and heavily and then tapered down. So at least the start is nicely defined for me. But I am only 1.5 years into it....and as I definitely do not seem to have a rapid form or maybe not even one devastating one, I guess it would not be uncommon in such a case to miss the signs. (after all, it is simple if you find Anti SCL70 or you have years of Raynauds history, but I do not). Nevertheless most reports clearly say that ANAs are not present in 100% (some say 60% some say 90% or even 95%). The same with Raynauds...some say 60-90%. So what about those that do not have any of these two? I guess even some recent reports here show that all of sudden ANA can be high even if checked multiple times before. I guess there are few diseases left that can explain this multiple (even if small so far) problems that seem to get worse over time, slowly but surely. So, yes it is reassuring that an expert looked at it...however ...would even an expert see what you feel in such an early phase...yes, he squeezed my strange index finger tip...and also did not know any answer....clearly he is right about the eczema...but if that is the solution of all problems...I doubt it. I would have felt 10 times better had he at least done a capilary microskopy or a skin biobsy. K.
  6. Hi, I experience more and more dry skin on the inner sides of the hands (and between the fingers). One of the fingertips (index on the right) has thicker skin. You can see it as the finger is thicker than the other hand index finger tip...but even more you can feel it (skin is hard on the outside and feels like rubber if you squeeze it). My assumption from all I know is that the normal fat layer is replaced there with skin (the other side behaves very different if you squeeze). Funny enough I went to see one more deramtologist who is actually famous of dealing with scleroderma patients. I only met his son who has started to step into his shoes. I do not exactely know how much experience he has, but he saw no sign (am I crazy?). He only diagnosed an eczema of the hands...which I guess is true, but I think by now where this came from (a hand creme I used, which caused the skin to get small blisters which itched and then caused some hyperceratosis). So now I got cortison cream against the eczema....we shall see, how that helps. Mid of November I have my final exam with the diagnostic clinic I was in summer which found a strange bacteria in my prostate and who attributed all the changes to this infection....which the dermatologist now clearly denied....that this could be the reason.... So I will have one more chance there to show them my hand skin changes and hopefully they will do some capilarymicroscopie (so far nobody did) or skin biobsy (also nobody did) or measure the thickness of the skin on the fingertips with ultrasound (should be possible). Manny and all the others with the hand skin changes keep us others please posted here what happens in your cases. I have also contacted the only European Center for Rehabilitation of scleroderma patients and the secretary was actually very understanding and encouraged me to call the leadeing guy of this center...in his phone consulting hour. He was however sick this week in the only hour he has reserved for such phone calls....so she told me to write an email...which I did and even more surprisingly got a mail back within one day. Only problem: the center is in Switzerland and while it is not even far away from my place my insurance will only cover in Germany or worst case in other EU countries up to the amount it would cost here...but Switzerland is not part of the EU and never will to protect their money activities....so....no coverage....interesting to place such a "European" Center in the only place where it can not at all serve most of the countries surrounding small Switzerland. (I mean it sits geographically in the middle of Europe, but that does not help). So I have to figure out if I can cut a deal with my insurance or if I go and pay myself. K.
  7. Hi, as far as I know, it is more a probability thing....Anti SCL70 normally appears with diffuse, but can also happen with much lower probability with limited....(similar to centromer, where it is the other way round). Keep in mind, that this whole disease anyway is very individual and the whole differentiation is artificial up to the point where even the differentiation follows two different schemes (and in Europe again another) and while it is more probable to have more organ involvement with diffuse, nobody really excludes that with limited either...they just move it to a later point in prediction and less severe...so how much worth is it to have such a marker...? K.
  8. Hi Isobelle44... what do you mean with "top" of your hand...is that the inside or outside.... There is a little bit of swelling on the outside (opposite the palm) sometimes where the fingers meet the hand and where normally you can nicely see the tendons...if they are swollen (in my case really only very little and very seldom and again right hand more than left) then you see the tendons less...as they "disappear"... But the main swelling is in the lowest part of the digits and again mainly towards the index...the more you go to the little one the less the swelling is...and right more than left. K I guess it feels so strangs as the normal fluid is missing...it is like dry leather rather than normal skin...
  9. Hi, please keep us postet, what they find out, as I have some of the same stuff (search for my posts or answers) that you describe...however without Raynauds. I guess here it is not about pitting or non-pitting (at least in my case and yous sounds similar)...the reason for the long indentation is very dry and less flexible skin on the tips..and other parts. Edema in my case is on the lower parts of the fingers...but while it is no soft it is also not totally hard so that you couldn't pit it. However the index tip feels like dead skin....and if you work with something that is dry, then this skin is more like plastic (you can squeeze it on both sides and it will lift up in the middle and stay that way for a while) and if feels also like the whole area is pushed in if you push even with a needle. In my case it goes down about half of the uppermost part of the index...and then turns into a leathery but at least a bit more flexible remainder of the index... The right index is affected most. E.g. if I cut and the index pushes the blad of the knife from behind, than this imprint is there for a long time....(or the trackpad)....also this wrinkly stuff (especially in the bathtub it looks way more weired than normal) I got. I tried to rip of the excess and hard skin of the tip (try that with normal skin...it would not work)...but in this case as it is so hard and dry you can actually rip it with the nails....however what comes back is the same shinny, hard, dry skin and if you rip it off it is tearing strangely (and shows also strange white color in the bathtub...like it is dead). Also no blood when you rip off the uppermost layer...dead stuff? And certainly I am loosing my fingerprints there as well...almost invisible and even less feelable. With the rest of my symptoms it obviously also brought me here....and it seems that at least 4 people here (plus you) have such similar skin issues and hunt for diagnosis. Strangely they all ended up here.... K.
  10. BTW: Dupuytriens was also a suggestion one doctor gave me a year ago...but hey, Dupuytriens does not change the skin or creat Sicca or like in one case mentioned here cause interstitial lung disease (hey, does that not ring a bell?? Or when is the bell loud enough to be heard...I mean I can understand the doctors partially in my case...but if ANAs are slightly high or I have already lung disease then there is not too much left to make the connection - or is there?) Thats what really worries me...if such cases can not even find a diagnosis....hey, who can? K.
  11. Hi manny and ez62... for sure there is one more similarity...you mention the skin between the fingers...yes, that was the first I noticed, that it is getting strangely smooth in between and as the finger rubbed more at each other (as the skin or fingers were swollen) this more smooth skin felt strange (this was about 0.5 year into the trouble)...by now (1.5 year) it feels also more leathery (less smooth now)...but not just there...also the complete palm and even the first and second part of the insides of the indexes and the same (however less so) on digit 2....digit 3 and 4 are almost unaffected. The tips behave different...they fell mostly rubbery and yet as they lack sweat and fluid you have to press hard to get resistance between the fingers. The index ones however turn even more hard (right hand index tip is more like the excess skin on my soles of the feet - I do not know how you call such hard excess skin that builds up with excessive stress that also normal people have...but not on their fingertips...no fluid has a chance to get through or to soften it). So that by now I have almost a less flexible cap on my right index that hurts when operating the mousetrack sidewards. And as I said, each wound ends up not softening up but around the area there is extra skin buildup and if removed (as you can peel it off as it is harder than the rest) comes back again soon. In my case only the Sicca (eye on left side become more severe right now, scratches like sandpaper the whole day, despite the fact that through the scratching there is actually fluid) and the Spine problems (Spondylosis) represents the almost all of my current general problems....sleep is more needed...but this is mostly due to sleeping sometimes almost not at all.....call 911 it says here if you have a gloomy feeling and think about suicide and can not sleep...hey, then I would have to call them every night and even sometimes on the days too...(not to mention, it is 110 here...:-) and this for the last 12 month...with some breaks in between when I was able to convince myself for a few days that it can not be, what it most likely is, if you can sum up 1 and 1....and to make things worse, as nobody really finds a hard diagnosis and does not even look closely at the obvious I feel even more depressed to watch things deteriorate without anybody doing anything against it before there is no more serious damage. That is what drives me nuts. If I have such a disease at least there would be some hope to slow it or stop it for good or a while....e.g. untill my kids are out of the worst. But as nobody treats anything.....it continues on its path. Until something severe happens so that a doctor finally sees a need as well to do something....I guess that is what makes this disease so horrible on top of all the various things it attacks and pain it causes. That you almost have to run and convince the doctors what you have as they do not want to see the obvious. I have sworn myself that I will try to insist on a skin biopsy or capilary mikroscopy....(BTW: in my case the area below the nails is OK...possible some nail skin thikening but could not tell for sure). However my moons of the nails are strangely blueish (were white) and also the rest of the nailbed looks more blueish especially toward the moons. And: if I stretch my fingers all the way, then on index fingers the nailbed becomes white in the upper half. On the other fingers this is less visible. BTW between the fingers I sometimes get some itching and then some small pimples (is that the english word) appear which itch even more and if I scratch they open up, spill some clear fluid and then it is fine and after a while the whole thing dries and goes away with some scaling of skin around the area of the original pimple....they apear in bunches especially between the fingers close to the knuckle area....also this gets worse (more often, more of them, on ever more fingers)....this was the only thing the dermatologist notices herself...and was interested in (I am not sure, if this is connected, independent or a secondary problem due to drier skin)....but is seemed to attract her and possible was the source of her writing "psoriasislike skin problems"....but this does not even look like Psoriasis scaling and also my nails are just curved and not like Psoriasis nails..... But there is a (scientific) report here, that more curved nails are highly specific for.....you got 3 guesses.... K. K. K.
  12. Hi, I guess some of you may have read my other posts. I am NOT diagnosed, suspect Sclero, have no ANA, bloodwork OK, no Raynauds. Here a short question... I have on one finger a fingertip where the skin feels like wax....(index finger, right hand). The whole skine feels more leathery of all fingers and particularly that one...but the tip of the index finger is totally smooth and feels hard like wax and even if I peel it off (was thicker too and in the bathtub I could peel some skin off) then it comes back as hard as before....after a week or so.... Is this how it normally starts....or does it start equally distributed over the whole hand....the other fingers are also slightly affected..tips feel more like rubber...but not as hard as this one.... K.
  13. Hi, ez62, I think many things you describe resemble my hands and palms. It started in June 2007 and started with the skin sometimes showing strange red/whitish color (like marmor)...(no Raynauds even up to now). It went on with the skin feeling stretchy more leathery on the palm are below the thumbs (when I typed on a warm Laptop the skin turned very reddish and was very smooth). Same happened to the index finger skin where the Laptop had to operate the trackpad. In July of 2007 the areas below the fingers started to swell a bit and there appeared new wrinkles along the finger in the direction of the fingers and the skin began to work agains stretching the fingers (like you describe....having to put more effort in stretching).... In August I could clearly see the stretched skin showing wrinkles in longitudional direction all the way to where the hand is attached to the forearm....and the palm yes pulle inwards and the skin let me see more and more of the veins especially when in water. In September the fingers began to swell (marriage band)....and more and more of the normal fingerprint like pattern on the first and second part of the fingers disappeared. And if you looked along the fingers it was a bit shinny. At night the skin burned and tingeled sometimes (I do not know if that is what people here call pins and needles and it probably was not so bad...but it was strange....either I got used to it or it went away after 2 month or so ...I still feel slight tingling at night, but it is only if I tune into it) In January I had something that I would call a mini necrotic behaviour on the right index finger. From then on I had sometimes a few splitter haemorraghes under the nails. The nails became more curved in longitudional direction and they became shorter. In April of this year the swelling become more and it actually hurt on some fingers (especially the indexes and more affected on the right hand side). Also the skin on the fingertips felt like if it had superglue on them (especially indexes and thumbs). The skin of the whole palm feels more leathery and dry and you can even produce some strange sound if the finger tips move across it with force (with no force it is too smoot and dry to produce noise). Now in about July of this year the swelling of the fingers became more permanent and also became harder and it felt like I have a second thin layer of dry skin that hindered stretching and if stretched with force also refused a bit to let me bend again (and it hurt to bend just like the skin was worn out). In August I recognized that the skin of the fingertips (again especially right index and a bit less the left index became very dry and hard and did not even let moisturizing solution let go through at night). I also recognized that at 2 areas where I had a wound in April the skin became thicker and harder and as it was in an area, where you need to bend (inside) I recognized that the skin there was refusing to bend easily...also recognized that you can peel this excess skin off in the bathtub and then it was OK...but came back latest a week later....still have those areas. Now in August/September the tips of the indexes (I had long time recognized, that I had trouble operating the mousepad as my fingerprints were almost none existent) became harder and smoother and I tried to peel off in the bath tub....peeled off it feels like normal (not that strange superglue feeling), but comes back and it becomes harder immediately. The skin of the whole fingers (especially indes and second) feels strangely leathery (like the palms) and harder and less felxible (on the inside only) and feels way to smooth and way to dry and without normal felxible behaviour (more like rubber) and hence I have trouble separating cards, turning pages. Also if I put pressure on the palms I have a strange mark...(like carrying a plastic bag or another sharp object)....in that case the blood coming back takes way longer (also happens on the fingertip of the right index with the trackpad) and the indentation stays for a while...same with sharp objects etc. (check mannys descriptions)....also holding the steering wheel which I have wrapped with textile will leave some texture copy on my skin which is visible for quite some time... In general it seems that the tips of the affected fingers behave more like rubber or like wax. Smoth, less flexible stangely dry and more slippery.... I guess whatever you describe (and what manny describes) is very close to each other...all 3 have no diagnosis....interesting.... But I would not attribute it to cancer....for sure not....this is some kind of skin change and involvement....nothing else. BTW: in my case Sicca is definitely also there. (eye and mouth)...not severe but dry....no Raynaud, no ANA yet. Slight blood circulation problems sometimes with emotions of cold (but not hurting, no color change...just colder than normal). And certainly puffy fingers for sure. Bloodwork completely normal except for my Yersinia infection that I am currently treating and which in case they were right has been going on for at least 1 year or possibly the whole 1.5 years....was found first time after 0.5 years... K.
  14. Hi, I am not a doctor and I do not want to scare you. But as far as I understand, the finding of ANA and especially Anti-SCL70 is pretty conclusive to indicate Scleroderma (which kind is not so sure, although with Anti SCL70 it is normally diffuse as far as I have found on most pages). Higher Titters of ANA also happen sometimes with healty people. And supposedly 90-95% of the Scleroderma patients have them (or in general any Auto Immun disease). So having just them would not be conclusive. But the SCL 70 I guess is much more indicative here. There are also things like Scleroderma Sine (without skin thickening) and I also understand that not everybody has thick skin overnight...depending on the forum you have (in general its a good sign if it has not progressed quickly). Thats all I can provide from across the ocean. And I am sure, there will be much better experts, than me... K.
  15. Hi, thanks for the encouraging words.... I will see what happens after the 20 days of taking the Antibiotic....and mid Nov. I will have the checkup....and if things have not improved by then I will try to be pushy enough to get some more answers....what I do not get is why they do not finally take a skin biopsy and sort it out.... K.
  16. Hi, So finally I have the result of the Diagnostic Clinic I went....and yet I am almost back to where I was already a year ago. Yersinia all over again is the reason they claim it is...it was found 5 month after the start of all my problems (1.5 years ago) and which was supposedly treated with Doxycyclin over 3 weeks back then....now supposedly it is still active 1 year later and supposedly is active in my prostate...(I have no problems or pain there and never had). Supposedly also the infection is visible in the Ultrasound....but was not 1 year ago. So now it is another antibiotic which I will take for another 3 weeks and again other doctors doubt, that the Yersinia antibodies in the bloodwork are not just from a previous infection (interestingly the doctor in the Clinic claimed that it is without doubt active from this kind of bloodwork...however 1 year ago the same values caused the same contradictory opinions amongst various doctors....) Asked if my sclero like symptoms are caused by this and are reversible. I did not really get a good answer...we shall see...they said... I still believe that whatever it was, has triggered some form of sclero-like disease. My skin on my fingers (especially the index finger, the inner side of the fingers more than other parts and the right hand more than the left) is becoming somehow thicker, drier (very dry), strangely smooth on the inside and also feels and looks strange...very strange, much too smooth and more rigid than normal. Still no Raynaud's (slight problems with blood circulation now and then though, but definitely no problems with real Raynaud's of even close to it). No ANAs. However Sicca is confirmed in one eye now and the other also is not far from that. And my mouth is dry. Skin on fingers feels rigid when stretching and even when bending I can feel it way too much....edema in the fingers especially in the mornings and again especially in the index fingers, right more than left. Sometimes does not really go away during the day....the dermatologist has seen it (I had my wedding band as proof and it was visible even without this time)...yet she concluded, that she can exclude collagen diseases....(How?)...but mentioned something of psoriasis like skin phenomenas....(well my fingernails are curved downward in longitudinal direction which as far as I read here, can well point towards sclero). Also I did have splitter hemmoraghes (also that she saw)...and I have already last winter some 2 or so tiny ulcers (tiny and only 2 of those miniature thingies under the nails...which I am still not sure, if they were or not) Other than that they confirmed my back problems as it has led by now to some deformity already (Spondylosis)....but where would that one come from all of a sudden since the time when all the problems began..? So I am basically back hoping on one hand, that truly it is connected to Yersinia and I manage to wipe it out those relatives of the cause of the medieval pest....but I do also know that it could very well be that it all triggered sclero and it all matches just too well for something like a collagen disease. I do not quite know how to go on....now. And I am more than down emotionally - this 1.5 year has been challenging to say it very diplomatically ... It drives me nuts, as on one hand I see the time pass by without anybody doing anything and yet I feel and see that it gets gradually (not too quickly, but constantly) worse. Now the fingers are really feeling more and more strange and dry and it feels like thick and rigid skin on the insides where you feels most anyhow...so for me the change is very well feelable and even visible as it looks not natural too at least on the most affected fingertips...but the doctors do not see a thing as they do not even look that closely and also are not interested in those minor details....I mean what else could something like that be and how long do they want to wait to finally do something? K.
  17. Hi, smac0719. I am non expert, but at least all my labwork always considers any ANA value of <1:80 as negative...so your first and second I guess was negative....some doctors even use different labs that use a different method and hence come up with a <1:100 value and consider that as neg too....so I guess the only time most doctors would say was positive is your 1:640 result? K.
  18. Hi, first of all thanks for the replies and sorry for my late reply...but I was on vaccation with my family and I made it a long one...who knows what will happen so....as long as I can....I enjoyed 4 wondful weeks...3 of them in south of France. Manny, your hand symptoms really are so identical to mine from what you describe....in the last 4 weeks of vaccation my first finger also feels more and more hard and thicker (and I can peel the skin off in the hot shower and then the fingers feels much more normal in sensation). I guess lateral means "inside" and that would match 100%. The skin is very dry, smooth and shiny on the first finger (index finger is the english expresion, right?). Also the thumb is pretty strange in feeling...all others are much more OK still....also if you slightly try to shift the skin (e.g. from the top of the finger towards the knuckle on the lateral side) then the whole portion all the way to the knuckle is affected as the skin is so stiff...on all other fingers the knuckle lateral portion would never see a movement, as the skin simply is elastic enough to cushion the movement. It is also very strange, that even moisturizing cream does not really make it into this harder outer shell of skin...only once I peeled it off in the shower partially this got better...but it comes back quickly. Also I notice on two previous wounds around on thumb and one index finger, that the skin around it now is much thicker there and again I can peel it off...but it comes back much too thick a few days later...and as it is close to the outermost lateral joint you can even feel and see that thicker stiffer skin as it "refuses" to bend where it should... Well here also an update: I had my second visit to the German clinic of Diagnostics in Wiesbaden....the follow up Urologist visit (remember protein and white platlets in the Urine and as I got to know only know also one prostate cancer marker slightly increased) took place. He was a pretty good guy and found an inflamation of the prostate which supposedly is still caused by my original Yersinia infection (which I most likely caught 1.5 years ago and which may have started all this...it was once already found after 0.5 years and supposedly treated with Antibiotics...Doxycyclin specifically for Yersinia....however according to this doctor now, that antibiotic is not very well reaching the prostate...). Supposedly all my condition could be explained by this...???? I doubt it though....looks much more in line with early edema phase of diffuse SSC then a Yersinia infection. Nevertheless the infection is still ongoing according to him (saw it in the high resolution 3 D color ultrasound and also the blood shows antibodies ....the antibodies were found many times before and except for the doctor who first treated it one year ago all others claimed that from the values one can NOT see if active or past infection ....however this one clearly once more said, that the value as they were show it is still active.... So it needs treatment again....why the guy that treated it first did not check that it was gone is puzzling me....and actually he did after 3 weeks of Doxy....and the values were like before (and like right now) and yet he did not see this as a reason to see a failed treatment...so before he saw enough reason for an active one which needed treatment...afterwards he did not see a reason to continue...and now the same values are a reason to do something more serious...? There you can see smurfette how much you can trust the medicine profession....I have pretty much lost that trust...and mind you we are talking about the major clinic in Germany for diagnostics and Germany is not a third world country but from a medical point probably on the top. Nevertheless my final visit to the Dermatologist there brought also no further news...I talked to her as well and she also thinks, that all the skin and spine stuff is related to the ongoing infection...I hope she is right as the edema of the fingers and also the back of at least the right hand is definitely getting worse and is much more consistent with diffuses SSc... But: no ANAs, no ENAs, no Raynauds....and there it becomes much more difficult...I guess that is what made the difference for you Smurfette...ANAs... And I disagree with Manny a bit....letting the illness take its course is in my mind the wrong thing to do....after all I just read an article here on this side from a major expert who complains that women are diagnoses much later than men, as many times men are taken more seriously and hence doctors search more rigorous as for women it is attributed more often in the beginning to psyche...however that article states that it would be so important to diagnose quicker, as the major skin thickening and organ stuff happens in the first 3 years and women take mostly 6.7 years and men 3 years...but the earlier you catch it, the earlier you could try to stop the worst stuff....so I do NOT WANT to wait....I want somebody who finally takes the skin stuff serious and maybe does a capilaroscopy or a skin biopsy....lets assume I am one of the 10% not ever having Raynauds or one of the 5-10% not ever having ANAs....does that mean I first need crippled hands or a lung that does not work before anybody starts to diagnose me and help me? I rather prefer to have it caught early and there are tons of signs that I can clearly see and read in many publications that 100% match my strange conditions...so why can't there be sclero specialists who look closely at such subtle things? Nobody so far ever did....the dermatologist at least admitted this time, that my fingers are swollen and even the skin breaks on some events due to this...and she admitted that the ring by far did not fit anymore..but she just admitted that and attributed everything to the Yersinia infection ongoing in the prostate...never heard of an infection causing all this....is this not a bit too easy? K.
  19. Hi, just an update...I went to the German Clinic of Diagnostics...so far they did not really find anything, other than supposedly protein in the urine and white platelets in the urine (but they had me scheduled for many checks with many doctors, just not the urologist, so that this will only be worked out on my final visit with them mid of September. I know already, that heart and lung seem to be OK. The Dermatologist exam unfortunately was not so thorough like all the others...and the rheumatologist also only found some spondylosis of the spine and nothing else. I did double check the protein with a test strip myself and that one seems false alarm. Also the CRP was slightly high (0.7 instead of 0.5)...but my wife (who was a nurse once) thinks this could be also due to having had a cold at that time...(which I had). But where do the white platelets come from if not from the kidneys (kidney involvement?...which would be not too uncommon for men and early in the disease). On the other hand my finger especially of the right hand (especially index finger) become more and more puffy, especially in the morning or late nights. Hard to bend them then. Skin is feeling very smooth on the fingers...way too smooth (due to being very dry and due to fingerprint loss). I also finally found a pic of what I have experienced last late winter, on the Dermnet site. That is exactly how it looked...I had it about 3 times and in less severe cases, there were only tiny red dots (lots of them) close to the end of the fingernails...I guess if there are too many in one spot, that is when it starts becoming inflamed. I am almost worried, that again even this specialist clinic will not find anything yet...I do not know how much longer I can stand the psychologic pressure of being treated like a hypochondriac and then knowing / feeling every day that something severe is not right and that it is almost with a 99% certainty systemic scleroderma (if it was limited, I should have Raynaud's, I guess for a long time already). Dear Manny, luckily no skin thickening yet...unless whatever I feel in the fingers and palms is already just that... K.
  20. Hi, thanks. I know that this disease is unpredictable by some sort...yet there are also tons of commonalities...and in the end it is called "slero" for hard skin...so I would expect that sooner or later everybody ends up with hard skin of some sort more or less except for those few exceptions that have only organ involvement with scleroderma sine... Blame it on me being a technical driven person (engineer), but if I have statistics than I can very well myself see, where I am and what my chances are...if after 5 years I still do not have hard skin, and most people tell me it happened within 6 month after puffiness and the puffiness took 6 month as well...then I would say I sleep a lot better....if everybody (or the majority) tells me it took 2 years of puffiness and then it hardened over another 2 years ...well then I know that after only 1.25 years, there is still a lot to look forward too...and it aint over yet... If the majority tells me it took only 2 month of puffiness and 2 months of tigthening...well then you also know that you are almost over the worst period for almost certain... What does not fit for me yet is the fact, that there are indeed some PhD thesis out and they do find a lot of commonalities in many cases ...keep in mind I can read statistics...but yet they are not neccessarily matching with most stories I have seen and heard. e.g. there is a nice one here on this site, which shows how quick major organ involvement happens with diffuse after start of skin changes....and most bad things happen for most people within years 2-3....so I am almost halfway over the period...if you count from the begin of ...well that is the interesting question....beging of first symptoms, slight puffiness, more puffiness, slight skin changes...real skin changes or what....that is the question.... I really do not know (absolutely ununderstandable for me as engineer) that this can not be displayed more clearly (even if it spreads a lot - nevertheless that does not matter...I can also show that with statistics...but instead there is completely confusing and contradicting information).... Well...we will see...but without close and proper tracking, so much is sure, the cause and cure will be left to accident but not to directed effort. And that is a very poor outlook. Disappointing... How do you ever want to find early signs if you do not track each and every person suspected, as they may turn to become real cases later...how do you want to find the exact start if people do not even remember themselves about the exact course after that long time when they finally are recognised with the disease and hopefully get quizzed to help other people earlier? Thats what puzzles me...apart from my personal struggle....it is simply somthing incomprehensible for an engineer how little directed this is...(not the disease itself..but the efforts to fight it). K.
  21. Hi, I still do not quite know, what is going on...however if at all, than I would be having early diffuse SSc. Now: some reports say, that the edema phase (puffy fingers) takes 2-3 years and over time skin hardens with diffuse SSc...others talk about weeks or month, that the skin hardens...in diffuse SSc... So what is true...who of you had the edema phase and how long did it take..? K.
  22. Hi, a friend of mine (posting on the German sclero forum) has just found out he has scleroderma (lung fibrosis amongst other problems)...now he is a stonemason (I do not know if this is the correct translation...but basically he works with stones, cuts them, chissels them etc...you get the hang of his profession). Now it is clear that silica is one of the well known triggers...certainly (he has a family) he would like to get insurance money of the German professional organization that normally jumps in whenever you have been permanently hurt by doing your job (yes, something like this exists in Germany)....question is: did ever anybody get through with such an argumentation that this is induced by profession? And was able to collect money from the employer/insurance...etc....or is this just no issue in the US, as something like this is not insured to begin with? Any input anybody...as if this has never been tried or succeeded by a lawyer in the US than he will stand no chance in Germany even trying...no lawyers are more inventive and successful than in the US fighting such fights (as German courts would be much more conservative and anyway you would never get a high US setllement so that it is less attractive for lawyers who are anyway paid by the hour in Germany and not as a portion of the settlement)...so I figure, if nobody in an US court has succeeded, than there is no chance ever he finds a lawyer who helps him here in Germany and tries to fight it, left alone proofing this connection....nevertheless it is somewhat suspicious that in this comparably very small German forum there are two of his relatively rare profession...coincidence? Probably not. Whoever knows anything about the legal status would be nice to let me know so that I can tell him...he certainly wonders how his family of 3 will survive...without his main income. K.
  23. Hi, the skin on the inside of the palms is definitely leathery like...no doubt..feels dry and leathery. Also the touch sense is different ...for some time it felt like I had superglue on the finger tips especially thumb and index and a bit less middle finger... And after a while I noticed that the skin in the bathtub on the finger tips behaved even more wrinkly and then it also began to scale when dry...also if I have a wound it becomes hard afer a while and if I peel the hard stuff off, the next hard stuff appears and fills the wound (looks like skin, but is harder and you even feel it). So skin thickening on the inside probably has started (it started with tightening about 9 month ago and went on with scaling about 5 month ago and it became worse....right now, after having pulled the excess skin off the finger tips...they almost feel normal (or I have gotten used to it...just they feel like they have less grip as the finger print pattern seems to have lessened, like somebody else described here...having troube holding cards (no I can still hold them...but opening a bottle of orange juice with a screw on top has become more difficult due to loss in grip and that is not he muscles..it is the texture and surface of the skin...) The skin on the inside it shiny...no doubt...and it is puffy, not doubt (ring test...) Well what ticks me off about this, is that it for sure would be helpful to try to stop this disease BEFORE it starts attacking more seriously and not once even I as a technician can diagnose it... Then, what do I need a doctor for? With the ARA criteria, anybody who is familiar with this disease can immediately diagnose it....that is no art...and you definitely do not have to go to university to diagnose it with such criteria.... I am sure, that some people who would more careful listen would find it much earlier and then (closely investigating such suspected cases) would also find early signs in blodd or whereever...but if they refuse to look....they will never find definite early signs. And that is horrible. I do NOT want to wait until my engine dies to find out it died (that I will then find out by myself)...I do expect (yes I am an engineer and I therefore do demand this)...that a doctor finds out from much earlier signs...I also have to find failures from very vague symptoms and descriptions and I have to ask the right questions to get my hunch and then I go and prove or disaproove and find the truth...but here we deal with lifes and not with chips like in my case. And if people do not understand that they have choosen the wrong job...(well there is funny enough one doctor on the German sclero site and she has similar problems and complains about it...and admits that this is a horrible system for such a disease). I do not want to praise my profession...but I think the way the doctor profession acts here is pittyful. Unfortunately lifes and families are dependent on this. (in my case too....(car chips)...and hence we would NEVER EVER act this pittyful) (sorry to say so, but that is how a techinician and engineer feels about this and it is the truth). If you do not find ANAs early in so many cases then it is possibly the wrong thing to look for as it is only a sideeffect. I do not have to look for a broken engine to find out it is broken (and that is how ARA criteria with respect to scleroderma are defined). If my lung has gone down the drain, do I need a doctor to tell me...or if my hands are crippled and what is he going to do about it in that late stage...? (nothing other than trials). So why not investigate it early when there is still something to be stopped...but then you have to be lert to early signs, monitor possibly cases that urge a doctor that it may be this...and after 2 years VERY close monitoring you will either know it was the onset of sclerorderma and you will have learned a lot new or you will have identified a hypochondriac...both are fine...but not doing anything definitely is the wrong thing when you want to find out more about the early signs and how to diagnose...that is what I complain about...what else do you need: thight, shiny leathery skin, strange nails bending like clawas with splinter hamorages, changes in facial expression (parenthesis have almost gone around mouth...) strange feeling of forehead skin, GI problems, dry eyes and burning eyes...burning mouth and tongue, spine problems, tendon problems, sometimes slight arthritis in the hands, sicca,....and before 1.2 years I was perfectely OK...so now tell me I do not have a AI disease....? Do I need a doctor for that. If your engine is not OK you also know as the sound of it is not OK..would I spend my time on such a forum if I did not clearly feel something is severly going wrong....so why not once in a while listen to a patient and be alert (why is this so hard for doctors?). I mean if we get a chip back broken we investigate it and we take care of it, so that we can actually investigate it so that we can prevent the same problem of ever happening again...so it is actually worthy a very good treatment...so that it does not die in the investigation...as we want to find out what is wrong with it rather than killing it.....now compare this to here (and we are talking human beings here...what is wrong with the oath that doctors swore...what is wrong with this profession? Just trying to make sure money?) Pittyful (sorry to say so..but it is the truth if you come to think about it). K.
  24. Hi Manny, I also have browsed a lot and read many articles and found almost all that you describe...and that at the same time is what really makes me mad...first of all there is so much oncfusing and contradicting stuff. And what is even more frustrating, that it is written by the same experts, that afterwards deny to see the obvious. In my case I actually life close to one of the big heros of treating slceroderma and and he has written many articles himself about the fact, that it is important to see the early signs and describing them (and many of them I do have)...and yet I went to him, he looke for ANA, for Raynaud and did not even care for the rest (and like you said, at that time it was truly less obvious but even now it would be way to subtle to get him on the right path...) And what gets me even more mad, ist that then at the same time, there are people worldwide who obviously present with what will most likely become scleroderma and have very similar signs from their description and the doctors seem to ignorant to see it. I am almost certiain that with a careful database of such people that present early claim that they have something like it, one could find many more early signs and have them diagnosed much earlier and also treated much earlier.... So, yes I would also say from all signs that it is diffuse SSc. What else would cause puffy fingers, sicca, some GI changes, a bit of hairloss, come on sudden for almost 3 month, then taper and slowly go on. And what else would make the skin feel different (I can feel it being stiff in my hands and soles...and even the forehead where it is dry for sure and also the arms). Now add a bunch of other things like burning in the mouth and tongue (better for a few month now). And some pain here and there (arthritis like), then tendon problems, back problems with tendons, sore muscles for no reason sometimes, strange nail behaviour...etc. Strangely enough even one private Rheumatologist gave me in writing half a year ago, that it maybe something systemic but for sure not SSc...funny I believe after having read many stories here on this site and on the German sclero site....how would he exclude it for sure? There is no way and with all the sign I (and also you) present I would say it is likely... Well as you correctely said, I have an appointment with a specialist clinic (but hey, I have been to many specialists and one University clinic already and yet with no result)....and hope that they are more alert (at least in one case presented on the German scler site they were and found the dignose and in that special case even a therapie after 10 years which even helped to improve it...and prevent the male guy from the wheelchair...so some hope....after he advertised for this clinic and the special doctor there were certainly dozens of people going there (Germany is not that big, so that this is possible). And the epxeriences so far of people having not being diagnosed for years and wrongly or not at all treated is pretty good....so that leaves some hope...yet I know in my case it is early...but I yet want to find those guys who have written those reporst telling you about all the early signs that they then refuse to take not of. So end of July I will know more for sure (at least I hope). It would sure be nice to find some guy that had similar symptoms at the beginning and is now already diagnosed...(and as the example of the two of us shows, there are quite good commonalities...so there must have been somebody who is by now diagnosed...). I by now also belief that I am not one of the guys where it goes really quick. I had posted here about one guy erlier who I got to know from the Germany slcero site...he is dead by now after only 4.5 years...but when he was first at doctors with stomach problems they quickly tested him and he was SCL70 positive immediately....so you may welll be right, that those that have it in the beginning have a much faster course...he was not able to work after only 1 more year (I am far from that)....and he had Raynauds after 1.5 years...(I do not think I would have it so quick...else the changes had to be more severe by now after 1.2 years)....and I also read from some specialist articles that UV treatment has a better response for those without ANAs. The only thing which ticks me off is this stupid looking for ANA and if you do not have it, then you are hypochondric...wrong....almost all men I met (expcept that guy above) had no Raynauds for years, had no ANA (some even after 10 years) and for sure did not have it early in the diffuse form. But why do even specialists not notice such trends if even people like us find similar articles (and seomtimes written from real experts in this disease) and find also from real cases. This disease is so littel reserached and treated as there is so much ignorance out there. That is the problem (I am a technical guy in debugging Chips and I am good at it...if we tried to find very rare bugs in one chip out of 10 Mio with equal ignorance then we would never find this one transistor out of a 40 Mio that caused the problem...). They are also rare...but we ONLY exclude stuff if we can proof it is not that...and that way we eventually find the problem no matter how hidden it is (worst case is two bugs)....But here I have the feeling things are done after the probablistic principle...lets find the most common cases and the rest will eventually become more ill and then we can diagnose them later (costs a lot of money and also self esteem)...and could negatively invfluence your rest of your life that you still have or worst case kill you instead of save you....That makes me mad as I am sure with a bit more database work and a bit more carefulness this disease could be way better understood. It is no argument nowadays saying there are too few people having it to get a good database...I mean people here meet worldwide so why can't hospitals and doctors....and why not sent suspected cases right away to real specialists and especially keep them under watch as those cases are the most interesting (those where you are not yet sure, but could become slceroderma cases)...as only if you observed those very carefully could you ever learn about the early signs...not if they stumble in already so ill, that even most of us could diagnose them... Thanks, CU
  25. Hi, I have posted a few times here before...I have symptoms for about a year and 1 and a half month. Started aprupt. Now the puffy fingers definitely have worsened (started after about 4 month and now the ring got no chance, yet with my bony finger, doctors do not even see it...and it also changes during the day and also between days.) The dermatologist I went to is supposedly an ANA expert...but he (in his head) surely diagnosed me a hypochondric...he told me, not Raynaud, no ANA...forget it...not clinical signs....well he missed to see the puffiness, he missed to see the splinter hamoraghes under the nails (as I crurently did not have any), he missed to see my clawlike nails (they were straigt before)...or he saw them, but told me his were more bend...(not true)....and I did not even mention the sicca and for my back problems he just told me I should have checked it for some other problem....yet my back is clearly not hurting due to the spine, but due to muscles and tendons not moving as flexible as they should...I can tear it loose...just hurts and after 5 min it is like glued again.... Now my question....how long and how strong did you have the puffiness thing, before skin thickening started and Raynaud started...bear in mind, I can still make a fist without real problems (yes hurts a little bit as the skin is stretched then, but I can make it). Does that mean I have a mild variant (as I miss ANA, Raynaud, and the puffiness is only at the fingers and only a bit...does it mean the worst is yet to come....(of the puffiness I mean)....or wuold I have already thik skin everywhere by now (1.1 years...) if I had diffuse...can I lay back already if nothing severe happened yet...or is this time fram quite normal and I still have to expect that all the other stuff will follow? can anybody (having diffuse...as it can in my mind only be diffuse if at all)...respond how it started and if this is already at a point where at least one can say it is only mild...(well what does that mean...just takes longer to get worse?) Maybe you can help me with your response.... I simply recognize, that the skin is involved (no doubt)...face chances, dry skin on hands and arms, scaly skin on hands...strange dry skin on face, that I can "feel"...(forehead, arm, feet), wounds that heal differently and slower...no doubt this is some form of skin disease....and as I have heard that many do not have ANA and Raynaud often only kicks in later ...especially with diffuse and with men....so I am still on the alert mode...(and yes, the puffiness worsens). Nevertheless the doctors say without Raynaud and ANA I should not even think about it.... K.
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