TOB

Lupus or Scleroderma, I am confused!

24 posts in this topic

Hi Blonzee,

 

Welcome to Sclero Forums! I'm sorry you have concerns about having scleroderma or lupus. Many of us have been in that boat in the past. Since they are both closely related, with many overlapping symptoms, it can sometimes take many years to sort out a proper diagnosis. I don't want to discourage you with the idea that it can take so long, but I also don't want you to get your hopes high that a diagnosis might be easy, or even eminent.

 

Regardless of how your next appointment(s) go, we are here for you. Most of us have had the hardest time of all while waiting for a diagnosis. Here are some warm, welcoming hugs for you. See our page on Difficult Diagnosis for some tips to help you during this time.

 

:emoticons-group-hug:


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.

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Hello Blonzee

 

Welcome to the forums! I am a rarity in that I was a quick diagnosis, misdiagnosed by dermatologists mid and late 2006 and again Feb 2007 but diagnosed with diffuse systemic scleroderma in August 2007. Mind you I had about 60-70% skin involvement that affected my ability to walk, sit,stand, move etc, I like to think misdiagnosis would have been impossible! I did also have a biopsy confirmation but negative ANA & SCL-70 as I still do!

 

Shelley is right it can be a long road to diagnosis for some but the important thing is you have your foot in the door so it's only a matter of time and irrespective of that we're all here!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi all,

 

I am very worried as I have had loads of blood tests done in the last 2 months as I went to my doctors because of pains and pins and needles in my legs. One blood test came back with low vitamin B12 and low folic acid which I am having injections for and tablets for the folic acid.

 

Another one came back with positive RO52 speckled pattern. I was tested for a lot of other ANA and ENA antibodies and all were negative. The only positive in the list was RO52. At the bottom of my test results it said negative and that it is not specific to Lupus and Sjogrens. I don't know what this means? I am so scared. My doctor has made me an appointment for me to see a rheumatologist at the hospital. I am so scared. I really do not want to have Lupus. I had negative RO60 and negative LA and loads of other negatives. RO52 was the only positive, but then it said negative at the bottom of the list. What else could it be?

 

I would really appreciate it if someone could please reply as I still have 2 weeks to wait to go to the hospital and I am going out of my mind having to wait and am getting loads of panic attacks and anxiety because of worrying.

 

Thanks,

 

Lauren

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Hi Lauren,

 

Welcome to Sclero Forums! I'm sorry you have concerns about possible connective tissue disease. :emoticons-i-care:

 

While you are waiting for your rheumatology appointment, it is important to try to keep some sort of perspective so that your worry points don't go off the chart, as you have so aptly identified it as your main concern at the moment.

 

The first thing that you will encounter in the field of rheumatology is that your blood tests mean absolutely nothing unless they correlate with your symptoms, and when it comes to symptoms, you typically need a whole bunch of very specific ones to add up to any particular autoimmune or arthritis disease. Odds are almost enormous that your doctor will repeat the tests, only to find they are all entirely negative or even that new, and possibly even more meaningless ones, pop up.

 

I would like to gently suggest that you try to pull out every trick in the book that you've ever learned about how to relax, both mentally and physically, before your appointment. That's because stress of this sort (the unknowing, the 'dying of curiousity') could be more damaging to you than any type of antibody, and because anxiety could also derail your appointment with the rheumatologist. You want to be able to calmly discuss your health and symptoms, and be able to comprehend what they are saying, as well.

 

Odds are really good that you have something that can be easily remedied, like a vitamin or mineral deficiency,as they have already found. Plus remember that about 20% of all lab tests are wrong, and who knows what (high) percentage are just transient things that will never even show up again.

 

However, Panic and Anxiety (P&A) can be lifelong friends, if we invite them to the party, so let's see what you can do to dis-invite them, and we can instead invite some old friends to visit you, like Hope, Faith, and Optimism (HF&O). HF&O aren't much fun to party with but the next day they aren't even half as likely to leave us with a hangover, either. So I will be sending a whole bunch of them your way, in hopes that they provide some comfort to you until you get some ANSWERS.

 

I'm sure you can handle any news, good or bad, it is usually the not knowing that drives most of us right up the wall.

 

:emoticons-group-hug:


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.

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Hi Lauren,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering such anxiety over your blood test results. As Shelley has said, taken on their own out of context, blood tests can throw up any manner of peculiarities, many of which can be irrelevant. I can understand how worrying it is, especially when you're awaiting an appointment and all manner of scary thoughts are going through your mind and I can remember vividly feeling very worried and anxious in a similar situation.

 

I'm hoping that when you see your rheumatologist, the results of your blood tests will not be as bad as you feared and as Shelley mentioned, they'll probably re test you again(I had numerous blood tests before they were able to diagnose me, in conjunction with the symptoms I was experiencing.)

 

Please do let us know how you get on with your rheumatologist's appointment.

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi I am new to this forum and I am glad that I came to know about this network. Actually I am suffering from the problem of scleroderma; from the last one year, stiffness on my hands especially on my right hand, skin thickening, tightening, swelling on my foot and hands. Many problems are coming one by one; don't know what to do or how to cope with this problem? Any suggestions or anybody who is suffering from this same problem please share.

 

Hello, TOB. You have received a wealth of good advice already and there is nothing I can add at the moment, but I do want to extend a warm welcome to the ISN Sclero Forums. I look forward to getting to know you better.

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Hello Aashima,

 

Welcome to Sclero Forums! I'm sorry you have scleroderma. I'm sure we'll all have many ideas for you on how to cope with it, but the best advice of all is to find a scleroderma expert to oversee your care, if it is possible. The experts are few and far between (even in the U.S., not to mention other countries.)

 

Here are some warm, welcoming hugs for you.

 

:emoticons-group-hug:


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.

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Hello Aashima

 

Welcome to the forums although I am sorry you have scleroderma. Are you getting good medical attention and support from family/friends?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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For anyone who has posted in this thread, we'd love to hear from you with a follow-up (at any time).  Many people are stuck for years without a firm diagnosis.

 

Has anything been figured out in your particular case?  If so, we'd like to know how that came about.  And if you are still in diagnostic limbo, we'd like to hear about that, as well.

 

:emoticons-group-hug:


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.

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