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So confused and panicking, was diagnosed and treated, now I have "perfect bloodwork"?

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I'm sorry if I should be digging through the archives for similar posts. I'm on my lunch break at work and I just have to get this out there immediately. 


I was diagnosed with Limited Systemic Sclerosis in January of 2007. I was treated until I thought they were going to kill me. 3 years of chemo, 4 years on O2, anti-malaria drugs, anything you can think of, I was given. They were talking about a stem cell transplant when I finally said enough and went off of almost all drugs and stopped going to the doctors. That was about 5 years ago, and I managed to get back on my feet again. For the most part. Lately I've had a slew of symptoms reemerge, so I caved and went to an ENT. Well, it was actually because I blew my eardrum out, but anyways, she was really interested in my history, so I let her take my blood and run a rheumatological panel.


I got a call from her today saying my bloodwork was just peachy. As in, I had nothing going on. Seriously? I was tested multiple times in the past and came up with positive ANA, anticentromere antibodies, speckled pattern. This morning I've been feeling horrible, like the past, and then I got this call. 


How is this possible? I was all ready to get the bad news- that I was used to- and then I get that call. Can anybody tell meanything about how this could be possible?


Please respond. I am so confused. Thanks.

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Hi PleaseHelpMe,


Welcome to these forums!


Please note I have no medical training. I can understand your concern when taking a cocktail of medication, but actually I would never advocate simply stopping taking the drugs, without the prior consent of your doctors.


However, the scenario you describe can happen, as blood tests can vary enormously, particularly over time and it is possible to have different results from each set of blood tests. This is why simply diagnosing scleroderma and other autoimmune diseases on the strength of the blood test results is very unreliable. Please see our sticky on the subject.


On a personal note, my blood tests have shown the same difference since I was first diagnosed ten years ago; at that time I had a plethora of different antibodies, but at my last blood test, the ENA screening was negative. No doubt, I still have the disease but it has certainly stablised and I am now gradually weaning my medication down, with a view to coming off the drugs completely.


I would suggest that as you appear so concerned about it, that you speak to your doctor/ rheumatologist and let them advise you of any further action you should be taking.


Kind regards, 

Jo Frowde

ISN Board Member

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International Scleroderma Network (ISN)

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Hi PleaseHelpMe,


Firstly, welcome to the forum, which I hope you find helpful, along with the website.


I'm sorry you are feeling unwell again, though pleased to hear that at least your bloods have returned to normal (which seems a bit weird to me too).


Something interesting I picked up from your post was that you saw an ENT specialist because your eardrums blew out.  I ask because I've been getting a lot of pressure behind my eardrums for years and my general practitioner prescribed Beconase, which helps immensely, but she was a little concerned about the length of time I have been using it.


I wonder if you could tell me something about what caused your ear problem and how it was treated.


I didn't ever relate my ears to SSc, but put it down to allergies due to an almost permanent state of having a runny nose and/or or blocked sinuses, though I wonder whether these may also be part of the autoimmune reactions.


Thanks, Dimarzio

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