Nailfold test and Tendon Friction Rubs?
Posted 12 August 2010 - 06:10 AM
I do indeed have some minor aches and pains, I wanted to tell him about as well but nothing major at all. Well he looked at me, said he saw nothing wrong but let's run a blood panel anyway and he is thorough! My ANA came back negative but my SCL-70 came back positive and now I have been all over looking this up and freaking out! He saw me again last week, again said I look clinically completely fine and we are re-running the blood at a different lab. I have no Raynaud's, no swelling, skin thickening, etc. My whole life since I am in early teens have been "gassy" with frequent upset stomachs for 35 years now, loads of normal exams at doctors including endoscopies, colonoscopies, CT scans. I seriously never even thought of concerns over autoimmune diseases except thyroid due to the family history.
I have a call in with Johns Hopkins with Dr Fred Wigley, they did my patient in-take and are calling me back with an appointment time. I am not fooling around with this.
I am terrified, I want to see my 9 year old and 7 year old grow up...
1. Have you all had nailfold tests? Does a normal exam exclude the disease?
2. Has your doctor checked you for crepitus or Tendon Friction Rubs? I hear they are clinically very specific for diffuse scleroderma...and I have searched and cannot find out how your perform such a test? It is done in office...but wondering what the doctor does ?
Posted 12 August 2010 - 07:54 AM
First of all, stop freaking out. Really, you have no need to that I can see from what you've said. A positive blood test is never, ever sufficient on its own for a diagnosis of scleroderma. There has to be clinical symptoms. We have a lot of information on the diagnostic process here. So that's the first reassurance. Number two is that even if you were to have some form of scleroderma, it is not always progressive and even if it were, every case is absolutely unique. There are quite elderly folks walking around with 30+ years of scleroderma under their belts. I'm now 63 and there is every likelihood I'll die of old age. Of course I'd like to see my grandkids grow up but the oldest is only 2 years old!
Not every doctor does the nailfold test. Mine did and I had clearly visible capillary dropout, so that was one of the diagnostic indications that got a yes in its tick box. It's my understanding and I could be wrong about this, since abnormal nailfold tests are so common in scleroderma, a normal one is probably a pretty good indication of "nothing to worry about."
Crepitus is just a medical term for a crackling, snapping or popping (yes, think about that cereal that snaps, pops, and crackles) sound or feeling, usually in joints. It's got loads of causes, many of them fairly benign and I'd bet most of us have that to some degree as we get older. So to test for it, the doctor moves a joint and listens and feels for that crackling sound/sensation. (I love tests like that!) Tendon friction rubs are looked for the same way - by feeling the suspect tendon as a joint is put through its range of motion. If there is a friction rub, it can be felt as crepitus - that snap, crackle, or pop. Has someone told you you have tendon friction rubs? They can also occur in other arthritis disorders.
I think you are lucky to have gotten the go-ahead to see Dr. Wigley. I'm sure he has a pretty tight appointment schedule, being one of the very best. I think he'll be able to reassure you one way or another that you should see your kiddos grow up.
So, take a deep, deep breath and say to yourself "this is not a death sentence, this is not a death sentence." Keep posting and let us know how it all goes, OK? I'm glad you found us. It's good to have a lot of new friends who understand how scared you are and why. Just don't believe everything you read on the web. A lot of it is so outdated as to be useless and some of it is just plain wrong!
Warm hugs and best wishes,
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International Scleroderma Network
Posted 12 August 2010 - 09:18 AM
Welcome to Sclero Forums!
I'm sorry you have concerns about possible scleroderma and are sending you some warm hugs.
Please keep in mind that I'm not a doctor, in fact I have no medical training at all, and verify everything I say with a reliable medical source.
As I understand it, there are a few helpful things to know and keep in mind. One is that scleroderma is only diagnosed based on clinical symptoms, and never diagnosed -- and certainly, never treated! -- based on blood work alone. So in the absence of any specific scleroderma symptoms, like Raynaud's, calcinosis, pulmonary fibrosis, skin tightening, etc., it is simply impossible to be diagnosed with, or treated for, scleroderma.
About 20% of all lab tests are erroneous. So, there is a 20% chance that lab test was bad and that your next test will be normal. Occasionally an Scl-70 will turn up a few years before someone shows any symptoms. The thing is, nobody can look into a crystal ball and figure out which person that will be. So do you want to worry yourself to death for a few years, only to find out that you have developed a full-blown anxiety disorder, possibly accompanied by some impressive panic attacks, yet not ever get scleroderma? It would be akin to having a blemish which the dermatologist says to "keep an eye on" once a year. I'm sure you wouldn't let yourself go into a fit over it, you would take it in stride and dutifully just have it checked every year, wouldn't you?
The reason people freak out more about "possible" scleroderma than "possible" cancer is that we generally know a lot more about cancer and we have seen people who have bravely met the challenges of dealing with it. But scleroderma is more scary because it is more of an unknown quantity.
Try to think of this as no different from that odd looking mole that needs to be monitored but not taken out yet. Everyone encounters things like that -- spots on the lung, odd looking moles, little things that need to be monitored, perhaps, but are fairly good odds of being nothing too serious, down the road.
This would be your odd looking mole. You might need to get a blood test or exam for a few years to make sure you are out of the woods, but those few years should ideally be spent having a ton of fun with family and friends, and not dismally staring death in the face. For what gain?
After all, let's say you do have scleroderma and it is the worst possible kind and you are going to die right away! If that was the case, wouldn't you want to love and cherish every single moment of the rest of your life? You'd want to watch sunrises, listen to beautiful music, indulge in healthy tasteful foods, revel in the closeness of family and friends, and be sure to do your favorite hobbies or take a daredevil hot air balloon ride -- not hunker down into a corner, overcome with anxiety, and then, depression, wouldn't you?
So although your reaction is very understandable -- we've probably all been there, done that, at one time or another -- this is also a terrific time to hit the Pause button and see if this is really the most helpful reaction for you to reinforce right now. Perhaps you could choose something else, like using this as an opportunity to develop some flexibility, a reason to get screened as a positive measure, but not as a ticket to a downward emotional spiral.
You don't need to spiral downward or out of control, because you have us, you have scleroderma experts, and you have knowledge and support on your side. Furthermore, you are still in the clear, lacking any specific scleroderma symptoms, so in that regard, it is time to do the Sclero Happy Dance which we indulge in any time things are the same, haven't gotten worse, or aren't as bad as they could be.
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Posted 14 August 2010 - 05:41 AM