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Biomarker for Diffuse Scleroderma skin has been discovered!


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One more update...still no progress in diagnosis...


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#1 anonym4444

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Posted 06 November 2008 - 11:11 AM

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.

#2 Shelley Ensz

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Posted 06 November 2008 - 12:19 PM

Dear K,

I'm sorry you are still struggling with this. With any luck, the skin changes will clear up with treatment for eczema. Of course, I have no medical training at all, but since your situation sounds quite atypical for scleroderma, it would make sense that your skin problems have just not been properly diagnosed or treated until now.

I think it should be enormously reassuring for you to have had an evaluation by a scleroderma expert...and some hopefully helpful and appropriate treatment for eczema. You may have had a collection of unusual and unrelated conditions, all along, which has made it so difficult to sort out.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 anonym4444

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Posted 07 November 2008 - 02:27 AM

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.

#4 ez62

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Posted 07 November 2008 - 07:01 AM

Well, it seems to me all us "undiagnosed mostly lurkers" have wound up on this board for a reason. I know myself, I would much rather be hanging out on an eczema (sp) board if thats all that I thought was going on. Truth is I never heard of sclero or Sjogrens till I started experiencing all this very strange changes in my body and started trying to look into what these symptoms might be. I know on the internet there is probably a large group of hypochondriac type people who self "diagnose"with horrible and rare things all the time. I tend to think the other lurkers and I don't fit into that category.

When my youngest son was born I knew almost immediately something was not right with him. Everyone including his doctors thought he was fine and it was implied I had some kind of depression going on that I just couldn't enjoy my baby. I knew absolutely nothing about autism back then, but as I tried to figure out what was going on with my son, as young as he was, the word kept popping up. Long story short, he is 4 years old and now has a diagnosis of moderate-severe autism. It took a bit of time for others, and the medical profession, to see something that I was seeing very early on.

I'm hoping one of us undiagnosed might stumble upon a doctor who gets to the bottom of things, and that the others might be able to take that info and run with it. I have absolutely no doubt in my mind that I have some sort of mixed connective tissue disorder going on, none at all. Thanks to everyone for all your great help advice and your ear!

Eileen

#5 Shelley Ensz

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Posted 07 November 2008 - 08:11 AM

Hi Eileen,

I agree, many of us were undiagnosed or misdiagnosed for years. The average time to diagnosis for women is 6 years; and 3 years for men. Most of us have some horror stories to tell from our journey to diagnosis. In fact, we have a page devoted to it on the main site, with many helpful tips for surviving the process in one piece: Difficult Diagnosis.

I just think that one thing to keep in mind is that, as patients, we are all patients, not doctors. It is not presumptuous for us to think that something is wrong, when something clearly is. After all, we do know our bodies better than anyone else!

But I think all of us would agree, that during this phase of questioning, we also need to remain open to all the possible diagnoses, along the way...just like you did with your son, not immediately jumping to the conclusion and insisting that it was only autism, but biding your time, watching things develop, researching all the possibilities, and then patiently waiting for the experts to catch up with you.

Some of us have more than one concurrent illness. Some of us have just a weird combination of things that may seem like scleroderma, but aren't. Some of us are just experiencing a slow onset, and figure that out early in the game, usually with a few telling symptoms and perhaps some curious lab results, often with a doctor muttering "lupus or scleroderma or connective tissue disease" initially.

It gets difficult to sort out, what is a reasonable suspicion and what is excess health anxiety. I doubt any of us has ever survived the diagnostic process without questioning ourselves, without wondering if we were just anxious or depressed or blowing things out of proportion. But sometimes, some of us are wrong; we have something else entirely, thank goodness. Or our initial symptoms just clear up and go away! (Which even happens sometimes with documented cases of scleroderma, even without treatment.)

Where is the line drawn between accurate suspicions by reasonable people and extreme health anxiety alone? I don't know that. I wouldn't venture to dare, and I am, by all accounts, thoroughly unprepared to make any sort of assessment.

All I know is that it is something for us all to remain vigilant about; an ever-present temptation to make a mountain out of a molehill, with all the amazing, and confusing, internet information at our disposal! What I think is great is that we all have each other to give honest feedback, and help us get out of denial on important issues and out of the clouds on unimportant ones, as much as possible.

It is one reason I really cherish this whole forum and everyone in it.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 ez62

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Posted 07 November 2008 - 08:38 AM

Very well said Shelley...thank you so much!!!

#7 georgette

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Posted 07 November 2008 - 10:04 AM

Hi everyone, Shelley did I read right ,what you said "sometimes symptoms can even clear up and go away "even without treatment!!!!!!

I thought once you had sclero it was a life sentence ,I thought you could go into remission but sclero was always lurking in the corner waiting to re surface ....... wow that would be so fabulous if that is true ...... it could be that I have read some posts wrongly in the past as I have to admit I can't always read the posts properly as the print is so so so small and unfortunately one of the first places sclero showed itself was in my eyes so I have to find a solution to this problem other wise I'll have you poor folk repeating your selves over and over to me, my apologies if you have to repeat your selves to me. I have tried to enlarge the print but have not been successful, I can only ever stay on this site for a short time due to the strain on my eyes trying to read this small print, they start to pulsate with pain within 5 minutes of reading posts so I try to read fast and that's probably where I am getting the wrong ideas ugh!!!! So frustrating as this site is so informative ......................hugs georgette

#8 Shelley Ensz

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Posted 07 November 2008 - 10:41 AM

Hi Georgette,

Yes, you heard me right...sometimes, scleroderma simply clears up on its own, even without any treatment at all. Also, very often it just "burns out" and quits progressing, but leaving behind any damage it has already done.

It is not automatically a death sentence; and many people even with systemic scleroderma manage to live long, despite everything. The oldest systemic scleroderma patient that I heard of lived into her 90's. Not bad, eh? Should we all be so lucky!!

That is not to minimize though that sometimes it takes a very aggressive course; sometimes it awakens from its slumber years later and continues to do damage. That is why we all need knowledge, support, and vigilence...and help developing a hardy attitude that can see us through the good times, as well as the bad.

Georgette, to increase the text size on any web page, hold down the Control key (It is labeled "Ctrl" on most keyboards) and press the plus (+) key twice (it is usually up near the Backspace key). Then keep holding down the Control and pressing the plus key until the type is readable for you. Then tell us, did that work?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Karenlee

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Posted 07 November 2008 - 11:01 AM

Shelley, you have such a way with words, thank you for your insightful posts. You take the time to really dig deep and come up with thoughtful and insightful replies, I know I appreciate your input.

I learn something new every time I come on to this forum thanks to all of you. I may not post a lot anymore, but I am still here.

Karen

#10 anonym4444

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Posted 07 November 2008 - 01:03 PM

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

#11 Wohali

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Posted 07 November 2008 - 03:03 PM

I don't understand what the problem is with some of these doctors. Okay getting appropriate treatment for the symptoms is one thing, but getting a diagnosis should not be that hard. Anon.... it sounds like your doctor did not do an ANA antibodies test which can confirm what you are dealing with by seeing what pattern shows up. Even if its negative or borderline but shows antibodies it gives the doctor good indication of what process is going on in the body.

Try talking to different doctors about it. I've found rheumatologists aren't always the know it alls of autoimmune illness. Of course rheumatologists are the best doctor to see for this type of illness but if you don't have a good rheumatologist in your town try looking for some other specialist. My general practitioner, cardiologist, allergist and dermatologist have all been knowledgable and helped me and all confirmed the diagnosis. Course the fact that my allergist understands CREST may have something to do with the fact he is married to my dermatologist.

#12 georgette

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Posted 09 November 2008 - 09:50 AM

oh wow thanks shelley it works , now I can read the posts without so much eye strain yay !!! hugs georgette