Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

For all that look for diagnosis...there are alternatives


  • Please log in to reply
5 replies to this topic

#1 anonym4444

anonym4444

    Senior Bronze Member

  • Members
  • PipPipPip
  • 49 posts

Posted 19 December 2008 - 01:42 PM

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.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 19 December 2008 - 03:53 PM

Dear K.,

I'm delighted that you have *finally* been able to get some more definitive answers regarding your diagnosis! What a very long haul it has been for you.

Thank you for sharing your experiences with us, all along the way. I am very relieved for you, in that it is not scleroderma!!!
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 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 19 December 2008 - 10:44 PM

Great news, K. I am sure this is a tremendous weight lifted. I wish you all the best in your continued treatment of whichever this turns out to be. I am glad you have finally attained right medical team, including yourself!
Warm wishes,
Jefa

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

International Scleroderma Network (ISN)

#4 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 20 December 2008 - 04:53 PM

Hi

I am also very happy for you and am sure you must be so relieved, I share in your happiness for you!!

Can I ask if your skin problem was all over or just on your hands though?

Thanks again....and I do hope that you still check in with us from time to time.
Sending good wishes your way!

#5 anonym4444

anonym4444

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 49 posts

Posted 21 December 2008 - 01:18 AM

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.

#6 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 21 December 2008 - 11:12 AM

Thank you so much K for the update on your skin...I hope that you have now caught it in time so that at least no more damage will occur...maybe in time with the right treatment you'll even see improvements....you're right can't change the past...but in hindsight on the upside with your past 1.5 years at least your future seems brighter now (not to diminish what you still need to fix/treat of course). :) :)
Sending good wishes your way!