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Frustrated and Scared


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#1 Patti51

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Posted 19 December 2010 - 07:12 PM

Hello to anyone!

I am experiencing all the signs of Scleroderma but tests all come back negative. Symptoms include a lace-like pattern of white surrounded by red all over my body. I refer to it as lace-like patterns. Dark and dry patches around my eyes, feet and white-like patches on my fingers. Sore joints and very sore feet. I also experience acid reflux. I have small sores in my mouth and a constant dry mouth.

I am fatigued and frustrated. I am not looking for a diagnosis but I am wondering if anyone else has experienced these symptoms when testing gives no indication of immune problems. I am at my wits end.

Thanks so much

#2 Joelf

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Posted 19 December 2010 - 08:48 PM

Hi Patti

Welcome to these forums!

I'm so sorry to hear that you're experiencing such unpleasant and worrying symptoms. It is possible to have Scleroderma without any positive blood tests as it is a very complex and difficult disease to diagnose. We have links HERE and HERE which I hope you will find informative.

Are you seeing a Scleroderma specialist? I would suggest that if possible you consult one as sadly many rheumatologists do not have the specialised knowledge to deal with this unusual disease.

I can empathise with you as before I was actually diagnosed with Sclero, I was very worried and upset. One good thing is that now you've found these forums you are no longer alone and you will find that there are many new friends to sympathise and offer advice.

Here's a :emoticon-hug: and do please post often and let us know how you are feeling.

Jo Frowde
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#3 Nia

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Posted 19 December 2010 - 09:18 PM

Hello Patti,

How frustrating for you to be going from one doctor to another with no specific result. Even though you say you are not looking for a diagnosis, it is important for you to have validation of your symptoms.

As Jo has already mentioned it is important to see a rheumatologist who is well versed in dealing with scleroderma. She has also pointed you in the right direction in regard to further links.

We certainly welcome you to our forum and I am sure you will find the support from others very helpful.

In the meantime Patti, be assured that we are here for you.

Warmest regards,
Robyn

#4 Amanda Thorpe

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Posted 20 December 2010 - 05:04 AM

Hello Patti

Welcome to the forum! Bear in mind that I have no medical training but I have never heard of a lace like rash as a scleroderma symptom.

When you say that tests come back negative I assume that you mean blood tests? When it comes to diagnosing scleroderma it is best done with a combination of clinical symptoms and test results (ECHO, lung function etc) because blood test results can be misleading. For example according to my blood work there is nothing wrong with me, negative ANA, normal rheumatoid factor, negative SCL-70 and yet I have diffuse scleroderma with heart involvement. Equally there are people with a positive SCL-70 who never develop symptoms of scleroderma.

As already suggested seeing a scleroderma expert is a good idea because if anyone can diagnose/rule out scleroderma it's an expert!

Take care and keep posting.
Amanda Thorpe
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#5 debonair susie

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Posted 27 December 2010 - 06:42 AM

Hi Patti,

Welcoming you, a very wise person, to this awesome forum! The support, information and sharing you will find will confirm, for you, that this was a great decision you made in joining!

As has been mentioned, there are those of us diagnosed by classic symptoms of Scleroderma, rather than through blood work.
Although it took 4 years for me to receive my (clinical) diagnoses, I had also tested negative for Scleroderma, prior.

I SO understand your feelings of fear and frustration. However, you are ahead of the game, in that you are HERE, which is a great resource. When I was (finally) diagnosed in 1995, I did not yet have computer access, putting me at a great disadvantage, to begin with. When I heard the words: Scleroderma, Raynauds, Esophageal Reflux Disease, Scleradactyly as well as Tangelasia...to say I was numb, is an understatement! I had not even HEARD of these diseases, let alone begin to even understand how this translated in a language which I would even begin to understand.
Thankfully, I received a computer from our kids. Not long after,I came across this forum, became a member and began perusing the information available here, I was able to better understand what I would be dealing with.
Although I've had several chronic illnesses added to the list, I have become my own advocate, thanks in very large part to the ISN!
My hope is that you feel a sense of comfort as a member here and become as empowered as we feel... as your own advocate :emoticons-yes: .
Special Hugs,

Susie Kraft
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#6 Shelley Ensz

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Posted 10 January 2011 - 08:19 AM

Hi Patti,

Welcome to Sclero Forums! I'm sorry it's because you have symptoms to deal with, but I'm glad you found us.

Since the rash you described was very unusual (and did not sound at all to me like scleroderma), I took the liberty of checking with one of our medical advisers on this, thinking the rash might be the distinguishing feature and the key to an accurate diagnosis for you. They said that you need to see a dermatologist, that you would possibly need a biopsy, and that the dermatologist should consider looking at lichen planus variants or poikilodermas. Because of your rash being so unusual, it did not sound to them like any sort of lupus or scleroderma (as much as one can tell anything over the internet, at least).

I would add that you would probably have even more success in getting to the bottom of this if you seek out a dermatologist at a major medical university, rather than at a local 'regular' dermatologists office. Most/many dermatologists focus primarily on skin cancers and/or cosmetic procedures. You want one who is passionate about skin diseases in general. Keep in mind that you may have to make multiple visits to nail down a precise diagnosis; some things are not super easy to nail down, but a biopsy can really speed the process up in many cases.

We serve people with scleroderma "and related illnesses" so please feel free to continue using Sclero Forums as a source of support, regardless of what your diagnosis turns out to be. Nearly all of us have found it most difficult to deal with the diagnostic process itself, wondering what is wrong and hoping to find a treatment for it.

Please feel free to print out this message and take it to the doctor's appointment with you, and it will be more substantial than saying, "I heard on the internet...".

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Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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