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Update - Back to square one


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#1 anonym4444

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Posted 08 October 2008 - 10:17 AM

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.

#2 Shelley Ensz

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Posted 08 October 2008 - 10:56 AM

Hi K,

I'm sorry to hear all you're still going through. But I wouldn't say it was entirely back to square one. I think you've made some progress!

They've diagnosed something, at least (actually a few major things, it sounds like) and you have a treatment program for them. There are a great many things that cause scleroderma-like symptoms. It sounds terribly confusing, and I am sure discouraging, but overall, I think you are actually making some progress in getting a few things sorted out, and treated. So please, just hang there and keep an open mind to the idea that there can easily be more than one thing going on and that many of these things would not be normal symptoms or findings in just a "normal" (is there such a thing?) course of scleroderma. Plus, some things really have to be fully treated, to see what symptoms are still remaining, before they can get further in differentiating issues.
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 10 October 2008 - 08:39 PM

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.