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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.
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