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Trying to understand what I have or don't have

Scleroderma Diagnosis

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#1 marcia



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Posted 19 January 2015 - 01:05 PM

For the last few years, I've experienced periods where I just don't feel well and have a low-grade fever, and experience extreme exhaustion. These usually last 2-4 weeks at a time. I never paid much attention to them. This past August, my TMJ flared up badly resulting in my jaw moving out of place. My dentist prescribed a max dosage of ibuprofen for as long as necessary, and even though I disagreed, I didn't know what else to do. Fast forward a few weeks to ankles swelling, canker sores, and another episode of feeling off with a fever. The ibuprofen never touched the fever, either. When I developed petechia on my legs and feet, I was sent to the ER. They couldn't find anything, but told me to stop taking the ibuprofen and sent me to an internist for possible autoimmune issues.


After extensive blood tests, I was immediately taken off Simvastatin for my high cholesterol as there were problems with my liver. After an ultrasound and further blood work, all returned to normal. But the tests results also came back positive for Limited Scleroderma. The Scl-70 was negative, but everything else was positive. I was referred to a rheumatologist but the wait was 4 months to get in. I called one afternoon in October to see how long it might really be, and they had just had a cancellation and took me in. 


She said I don't have Scleroderma at this point, even though I tested positive. I was put on Plaquenil to stop whatever was happening from developing further. I have another appointment in 3 months. Since then, I've noticed changes but I don't know if they're related. I itch everywhere most of the time. I started taking Allegra D daily which seems to help a lot. I still itch but not nearly as bad. 


My fingers have started swelling in the morning, but it goes away as the day goes on.


If I sit for more than 30 minutes, I am incredibly stiff when I get up. It takes a few minutes for it to go away and I have to walk stooped over in the meantime while it works its way out.


My right heel has become extremely tender and painful. According to Google, it could be Achilles tendonitis but I don't exercise, "pump bump" but I only wear flats, or possibly a result of scleroderma. 


My skin is fine, although I do have a few very small spots that have no pigment.


I guess my question is, are any of these things symptoms of early-stage Scleroderma? If I don't have Scleroderma, what do I have? What is the diagnosis for the exhaustion and low-grade fever? Is there such a thing as autoimmune disease without a specific diagnosis? I'm just pretty confused. 


Thanks for any thoughts or advice.


#2 Joelf


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Posted 20 January 2015 - 09:52 AM

Hi Marcia,


Welcome to these forums!


I'm sorry to hear that you've been experiencing worrying symptoms, which may or may not relate to Scleroderma. Unfortunately, Scleroderma is notoriously difficult to diagnose, not least because it's symptoms are so varied and it affects everyone differently. Although some of your blood tests have been positive, it is perfectly possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa.  Because it is such a complex disease, we do recommend that our members, if possible, consult a Scleroderma expert, as sadly many rheumatologists do not have the knowledge and expertise to deal with it's many idiosyncrasies.


I'm afraid I am unable to advise you as to whether your symptoms do point to Scleroderma, as apart from a now out of date first aid certificate and a fondness for telling my medical team how to do their job, I have no actual medical training. I would suggest, therefore, that you keep a record of your symptoms in order to help your rheumatologist to arrive at a diagnosis; it may be necessary for him to give you more tests in order to get the complete picture.


Please do have a browse around our medical pages, which include Amanda's super videos and let us know how you get on at your next appointment.


Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 20 January 2015 - 02:49 PM

Hello Marcia


The best thing you have going for you is a doctor willing to treat you with an open mind. Although you have scleroderma antibodies you don't have enough symptoms to support a diagnosis, it is possible that you might develop them but then again you might not. That no one can tell you but as already said your doctor appears to be keeping an open mind, if not I guess they would have simply sent you off, without medication or a further appointment.


As it happens I have scleroderma and a negative SCL-70 & ANA. whatever happens my blood work is negative.


Take care.

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#4 marcia



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Posted 21 January 2015 - 11:32 AM

Thanks for your thoughts on this. I'm learning a lot from reading, reading and more reading. It's becoming quite clear that there is no simple diagnosis, so I will just keep track of things as you suggested and bring them to my next appointment. And in the meantime, I will try not to worry! 

#5 Shelley Ensz

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Posted 22 January 2015 - 06:16 PM

Hi Marcia,


Welcome to Sclero Forums!  I'm sorry you have concerns about possible scleroderma, some troublesome symptoms, and that your blood work tested positive for it.


Altogether, I think you are off to a good start with your rheumatologist. It sounds to me like they are taking you seriously and that they will be following you closely. And who knows, being on plaquenil might be just the ticket for you; it is often used with scleroderma and other connective tissue diseases.


Most of the time, what we encounter with early stage disease is that their doctors disbelieve them, mostly because the initial symptoms are often mild so there is nothing definite to hang their hat on. I'd say you can relax, in that it sounds like you are betting proper care for the time being, and you are also aware of scleroderma experts now, and of the importance of seeing one if/when it ever seems like the time is right for you.


If you're like most of us, you may not be able to entirely sidestep a case of the worry-warts, however, you can focus on funneling that energy into happy and productive things, like relaxing and refreshing hobbies, which many of us find to be our saving grace.



Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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