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Not Diagnosed Yet

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#1 kmull



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Posted 17 December 2006 - 07:50 AM

I have receintly had labs run to rule out an autoimmune disorder. My sedimentation rate is slightly elevated, I have positive ANA screen, titer and an abnormal ANA pattern.

Upon researching the interpretation of these results, scleroderma came up as a possible diagnosis. I saw it on Discovery health so I am limitedly familiar with it. Not looking for ways to fit the symptoms I considered them and I have some questions before my rheumatologist appointment.

One article talked about little red dots on face tongue and hands, I have had one or two at a time since I was a child but they come and go. The skin on my hands and feet are different than on the rest of my body. Not as "tight" as in pictures of diagnosed patients but tighter than the rest of my body. It gets itchy and dry and I cannot apply enough lotion to them. They burn as if they are swollen as far as my skin will stretch but not 100% of the time. Sometimes they swell and I have to take my rings off. They always hurt and I am beginning to loose grip of things and drop them several times a day and being a phlebotomist that is not good. My wrist twitches sometimes and as a result I have infultrated veins. holding the needle is getting more difficult. My feet get hot and swell and burn and I cannot ever walk on hard floor without shoes slippers or sox due to the pain. My symptoms are not all of the time. I do not swell all of the time. My joints ache and I have GERD but I have had it for years. As is the same with other gastrointestinal problems. I get fevers randomly and I am afraid to come out and tell my dr I am afraid I have this for fear of coming across and a hyperchondriac. Do these symptoms although I do not have them all of the time sound like sclero? Can anyone help me?

#2 Katherine


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Posted 17 December 2006 - 10:54 AM

(DX almost 2yrs ago.) Of course everyone's symptoms may be some what different and sclero can come with many or few.
With this diease I think you really must have a good relationship with your doctors. If you're afraid to ask about this , are you with the right doctor?

#3 Elehos


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Posted 17 December 2006 - 11:24 AM

Hi Kmull,

I understand the hand and feet swelling, cannot walk barefut anymore, and noticed that my shoe size has increased by a full size since last year. My hands tend to get little blister like bumps and are swollen most of the time now, so I had to give up on even wearing my wedding ring 99% of the time. Not to mention it makes the Raynaud's worse when it's cold. There are times that both my hands and feet burn, and recently found out that I had developed a complete intolerance for dairy, which was making it far worse. The little red spots (petechiae) hit on an off as a child (from the early to mid 1970's), but became widespread and permanent back in 2004, and my oil glands have gone on strike. My skin is like leather in certain areas, it shucks off in the shower as if I had been sunburned, and I feel like I want to take a bath in pure oil or lotion! Just last week I found out that part of the itching was calcinosis on my back and neck, and whenever these little "crystals" start coming through the skin, the itching becomes intense!

Yes, you will get joint and muscle pain, sometimes it can feel like bones are broken (especially in my feet!), and my hands twitch and jerk horribly some days. I have carpal tunnel in both wrists, and at this point have a lobster claw for a right hand, so it can be more than awkward if your hands are locking up and shaking with your profession. I'm so sorry that you're going through this! Let's see...oh, the "lump" in the throat that can make swallowing extremely difficult, esophagus spasms, GERD can be a problem, but it's not as bad with me as with most. Frequent fevers, although not generally high, just a degree or one and a half degrees higher than usual, tendons that are becoming inflexible everywhere (my gyno said it felt like scar tissue during one exam), calcification of ligaments, rashes, some skin tightening and darkening, although not extreme...

I just wanted to give you a run-down of various symptoms I've had, although there are more, and others can add so many I've never had. It's no wonder that we can sound like hypochondriacs to a doctor! Please don't worry about looking that way--print out some of the symptoms that others mention and bring that to your doctor (if he or she will listen) so your doctor can see that others have the same laundry list as you. At the beginning I would question myself, wondering if all this could be real, but it is, and like you there's bloodwork to back it up. Again, I am so sorry that you're going through all of this, but please don't leave out symptoms when you go to your doctor, although the list might be long. I found out that even some of the "little" complaints were more important than I initially thought, and those helped with the formal diagnosis of sclero in addition to the blood work.

Hopefully you won't feel like a hypochondriac now, and what I've typed here is common to most, if not all of us on the board. Any time you have questions, concerns, or just want someone to talk to, you've got a family here!

Best wishes to you,

#4 Heidi


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Posted 17 December 2006 - 11:34 AM

Hi and welcome to the forums,

It sounds like some of your symptoms might be symptoms consistent with a diagnosis of scleroderma, BUT it also might be something else. Scleroderma, as I am sure you have read, is a very rare disease and often difficult to diagnose. Doctors will typically make the diagnosis based on both blood work and clinical symptoms. Why did you have the blood tests to rule out an autoimmune disease in the first place? And, who ordered it? Has that particular doctor met with you to discuss the results?

I have been diagnosed with undifferentiated connective tissue disease because none of symptoms meet all the criteria for any one disease, although my rheumatologist has commented on several occasions that I most likely have limited scleroderma. At first I was very focused on all of my symptoms and very aware of any and all changes and knew that any day I would get the all over skin tightening and hardening, but it never happened like that. I finally quit worrying about getting "the correct diagnosis" and focused on getting the appropriate treatment for the symptoms I was experiencing. And, after joining this board I learned that my rheumatologist was providing me with the best treatment for those symptoms.

I do hope you will be going to a rheumatologist soon to discuss your test results and clinical symptoms and will have more answers then questions. Please do keep us posted.

Warm wishes,

#5 Sweet


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Posted 17 December 2006 - 11:37 AM

Hello Kmull,

I want to welcome you to the sclero forums. I'm sure sorry it may be due to an autoimmune disorder.

Symptoms vary from person to person. Some of the symptoms you've described do fall inline with Scleroderma. However, realize I am not a doctor. I want to give you a link to look at which will give you an overview of Scleroderma Symptoms. I will encourage you to see a rheumatologist to review your symptoms and lab work.

We look forward to seeing more posts about yourself, ask any questions you like, this is a wonderful place for support.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 elainegh



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Posted 18 December 2006 - 11:36 AM

I was just diagnosed 5 days ago and was misdiagnosed several times. What you need to do is to get an ANA and if it is positive then you go further. The two main blood tests done by a rheumatology lab which are pretty definitive for cleroderma are SCL 70 and Anti Scl-70, as well as a test called anti centromere. A high SCL 70or Anti SCL 70 is usually diagnostic for scleroderma the diffuse kind and the anti centromere one usually the limited kind involving just the skin or CREST form of scleroderma. Other tests to do are RA for rheumatoid arthritis and LE for lupus. I have tight skin on my hands and face not my feet and sticking pains like needles in my hands and face. My joints hurt a lot. Everyone with these diseases has a different clinical pattern, but the blood tests are what finally diagnosed me.
Hope this is helpful.

#7 janey


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Posted 18 December 2006 - 01:21 PM

Welcome to the forum. As everyone as already mentioned, we're all different and so are our symptoms, so based on the information you provided it is hard to say one way or another. Heidi and Sweet have provided some great links that will give you some invaluable info. My suggestion would simply be to "write everything down" before you see the rheumatologist. Write down all your symptoms whether you think you they are disease related or not. Take the written list with you. That way you can remember things. It's so easy to forget when your in the doctor's office. And certainly don't worry about coming off as a hypochondriac. Unless the doctor knows EVERYTHING that is going on, it's hard to make an accurate diagnosis.

Please let us know how your next appointment goes. I'm so sorry you are here due to your symptoms and suspicions, but as you already know, you've come to a great place.

Big Hugs to you,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 kmull



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Posted 18 December 2006 - 01:54 PM

I asked my primary care physician to run the test after my surgen (for my hand) suggested when I informed him of my lack of pain and swelling and ability to sleep through the night while on prednisone and how coming off seemed to be excruciating in the pain catagory. I am being referred to a Rhumatologist but they said they would call me back IN A FEW WEEKS for an appointment. There is only one in the area.

#9 whirlway


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Posted 21 December 2006 - 12:54 AM

Kmull, Janey gave you some good advice, make a list of all the aches and pains etc. and tell your dr. [u] sclero is difficult to diagnosis and not everyone has the same symptoms all the time.[/u] I have been dealing with this stuff since '85 and some days some things hurt more than others. When you first start having symptoms, you may start to wonder if you are a hypochondriac, but given your labs and the problems you are describing, I sincerely doubt your dr will think you are a hypochondriac. Hopefully he/she will be compassionate and be able to give you some advice and meds to help your symptoms.
Also, GERD is nothing to mess around with. Just recently, my brother-in-law, who just thought he had really bad heartburn for years, was diagnosis with gerd and also a cancerous tumor from all the acid in his esophagus. So make sure you are taking good care of that.
And this from Heidi--' At first I was very focused on all of my symptoms and very aware of any and all changes and knew that any day I would get the all over skin tightening and hardening, but it never happened like that. I finally quit worrying about getting "the correct diagnosis" and focused on getting the appropriate treatment for the symptoms I was experiencing.' Yes, we all want to have a proper diagnosis, but the most important thing is to get the right treatment for the symptoms. That is why you really need to tell your dr everything, be completely honest and upfront with him, and you will get the treatment you need.
Good luck. Keep us posted.

#10 ElizaJ


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Posted 27 December 2006 - 04:01 PM

Kmull, I am sorry you are having such a bad time. I can understand what you are going through. It doctors 8 years to diagnose me. And the diagnosis finally came when I got with a rheumatologist who listened to me, read my files, and did the proper blood work. She took 18 tubes of blood!!!!! I thought I would die! But it was worth it. She not only was able to diagnose the SD but she is the one who diagnosed the OA as well. I love my rheumatologist and would not trade her for anything in the world. The reason is this, the first time I saw her she told me I was not crazy nor was I a hypochondriac. She listened to everything and said now lets find the problem. She said that she would be completely honest and work hard for me if I would be completely honest with her. That led to a really great relationship!

I am hoping you will find what is going on and to be with the best doctor possible!!
Hugs to you.

ElizaJ :)