Scleroderma: Unexpected Diagnosis

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NinaPost

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I went to an internist who did loads of bloodwork. She tested me for lupus and said it was slightly abnormal. She wasn't going to re-check it because it was normal in March. But she decided to anyways and did more specific tests. One test that came back positive was for Scleroderma. I didn't even know what it was but now I know so much about it thanks to the internet and I am absolutely terrified.The internist was shocked. I don't seem to have any symptoms whatsoever. She re-checked it again to make sure it wasn't a false positive. I get the results back at the end of the week or next week. I also read that you can have antibodies for it and not have the disease. I am praying that this is the case for me as it is a horrible chronic disease. Anyways, she didn't think the twitching, numbness or cramping were related to scleroderma (if I have it). Right now I am so scared that I have this and that I won't be around for my kids. Please pray for me. I am terrified.
 
I relate to your worries. I had an extremely high ANA antibody titre and am awaiting the followup bloodwork results. When I researched the common autoimmune disorders like scleroderma I noticed that I didn't have the symptoms of any of them. I know I have something and this twitching. It is not helpful that the twitching is not a symptom of these other problems because at least if you had them you would know what you are dealing with. I certainly hope neither of us has scleroderma but the antibodies must have something to do with the twitching.Krackersones
 
I have symptoms similar to both of you and I can realate to your fears. I have not had any addtional bloodwork done besides the basics. Is The scleroderma something that they test for normally or did you have it done specially? I am having a hard time having my dr's research or look into my twiching/cramping buzzing tingling aching. They belive it is all related to stress which I agree that stress is making it worse but it is not the cause. :( Hang in there ladies and good thoughts for all of us.
 
I don't know if your "basic" bloodwork included an ANA antibody test. I'm not sure if this is the official name but if you referred to it that way your doctor should know what to order. The first neuro I saw ordered bloodwork but it did not include an ANA antibody test, so this makes me think it is not a "basic" test. Anyway, it is an abnormal result on this test that triggered the next batch of tests I received. I am still waiting on the results. The ANA antibody test is very general and does not point to a specific condition but rather is a signal that there may be a problem. From my quick research, I don't think there are specific tests for scleroderma or many other autoimmune diseases that are sure indications of the conditions. Rather there are more specific tests that along with other factors (symptoms etc) point to a likelihood that you have the condition and based on a doctors educated assessment you are given a diagnosis.Krackersones
 
Yes, there is a specific test for Scleroderma. It is called SLC70 or anti-topoisomerase I. Believe me I know so much about it now Initially my ANA antibody was slightly elevated which was why I had to have further tests. My SLC70 was positive so I had repeated again to make sure it wasn't a false positive. I am very worried. My joints are sore and I am terrified this is why.
 
Of course, I am basing all of my info on the tests for Scleroderma on the internet. I would like to believe that some of it might not be true but who knows....
 
From what I have read it is possible to only have a mild case, especially if you are not showing very many symptoms. I hope thats true in your case.I am sorry if you have already posted this but what are your other symptoms?
 
The doctor said it could be a false positve (which can happen) or you can have antibodies for the disease but not actually have it. I don't know for sure if I have it. The next few days are a waiting game. All of the symptoms I have (twitching, cramping, stiffness in joints) I always attributed to BFS. Today I am in a lot of pain (my quads are burning) and my joints hurt. I pray that it is BFS and not Scleroderma. I have read too many scary things on the internet about it and I am so scared. I know there are different forms and you can get a mild case of even the worst form. But the internet seems to always put scary statistics and worst case scenerios on there which has had me crying all day today.
 
please try to not jump ahead of yourself-- i have had bloodtests that were positive for random things ( liver enzymes come to mind )-- just try and wait -- i know it is so hard-- and i am sorry that you have to go through this...we are all here for you... you sure sound like a bfs person to me after viewing your posts-- my thoughts are with you ...bk
 
Please don't think the worst yet. You said yourself, even if the positive result is not false, there could be other explanations. I know it is so hard not to go to the worst place and I wish there was something we could tangibly do to distract. Just keep believing the best. Praying for you.Cindy
 
The doctor got my result yesterday but doesn't seem to want to give it to me. The receptionist called me this morning to say the dr. took the results home with her yesterday. I told the receptionist I wasn't feeling well and wasn't sure whether I should see the dr. or not. She said the dr. would call me this afternoon with the result and let me know what to do. It's now 7:00 at night and I still haven't had a phone call. I'm so upset. The wait is killing me.I am so surprised. This doctor is so caring and compassionate. My husband seems to think its negative or she would have called me back. I think that may be true. Either that or it was positive again and she is trying to speak to a rheumatologist and see if there is an explanation. She did write a letter to my dr. saying she was shocked it was positive. So the wait continues and my nerves are frazzled....
 
I have been in your situation so many times in the context of waiting for mole and breast biopsy results. All have turned out benign but there seemed to be no pattern as to how soon they called or whether they would tell me the results over the phone etc. I always tried to read into their behavior each time but I don't think you really can. I had doc assistants tell me I needed to come in because it was their policy not to they say over the phone and it was a Friday. All that anxiety just to be told it was benign. The odds are in your favor for a great outcome but I know the waiting is agonizing.Krackersones
 
Hang in there-- I agree with JRO-- there is no rhyme or reason with regards to the docs protocol about calling if it is "good news" or calling if it is "bad news"-- and the timing etc--
 
Oh, sweetie, don't cry. This is all just going to be a bad dream soon. With no symptoms, it is very likely that there's an explanation for the positive test. Having to wait messes with your head so much and I am sorry for that for you. Please let us know the minute you find out something. In the meantime........believe the best, not the worst.BlessingsCindy
 
The internist told me there was a slight improvement in my bloodwork (whatever that means). However, I am still slightly positive for scleroderma. She said it is too early to diagnose me because I don't really have the symptoms. I am going to her office to speak to her more on Monday. She is still hoping it is a false positive. She has also referred me to a rheumatologist who will do further tests.I am still up and down. I read that you can have antibodies to certain autoimmune diseases at any given time but it doesn't always mean that you have the disease. Hopefully this will be the case. Other times I cry a lot. I read some scary things on the internet about how quickly it can kill you. It breaks my heart to think of the possibility that I won't be around for my kids.
 
hi-- thanks for posting. i have been wondering how you were doing. all i can offer is to say "hang in there" because if your bloodwork changed in that short of time, perhaps the test is unreliable. monday's appointment will be here soon-- and take some drugs to get you over the hump.pehaps your doc can shed some light on the reliability of the test and how you could be asymptomatic and still have it...you have no symptoms so to me, that is hugely in your favor. thinking of you .
 

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