Posted 15 April 2011 - 04:48 PM
All the best, Christine
Posted 15 April 2011 - 10:11 PM
Posted 15 April 2011 - 10:30 PM
Unfortunately scleroderma is very difficult to diagnose, and can occur with other autoimmune conditions. Blood work may not be conclusive. Morphea can occur without systemic scleroderma.
Do you know how the blood work for inflammation indicators(Sed Rate and CRP [c-reactive protein])is? If abnormal, it can indicate an inflammation process in your body, but is non-specific (could be caused by any number of things [flu, arthritis, etc]
Getting a diagnosis can be very difficult. Unfortunately, most patients have difficulties like yours before finally getting a firm diagnosis.
Posted 16 April 2011 - 04:50 AM
Posted 16 April 2011 - 04:56 AM
My blood tests were all negative. The Rheumatologist diagnosed me with Scleroderma based on my symptoms: Raynauds and Achalasia. Also he noticed my fingers are shiny and tight from the middle knuckle to the fingertips. So that was how I was diagnosed - from symptoms. I asked him for a finger biopsy too, so I could be sure, and that confirmed the diagnosis. Good luck to you, I know it's hard having symptoms & not being able to explain them.
Posted 16 April 2011 - 08:42 AM
I would re-emphasize becoming familiar with inflammation indicator blood tests. Even though non-specific, you can get some idea if there is an inflammation process going on with your symptoms, especially the pain (arthritis, myositis, etc will tend to show up in these tests). Conversely, fibromyalgia, which causes some people great pain, usually does not show up in any blood tests.
Posted 16 April 2011 - 03:04 PM
Well this is going to make for a long weekend isn't it? I'm sorry. Most doctors take into consideration blood tests and symptoms in order to make a diagnosis. Many have had Scleroderma with a negative lab result. Try to relax, not stress and please let us know what you find out on Monday.
Posted 16 April 2011 - 04:59 PM
You need a scleroderma expert, if you aren't already seeing one.
A scleroderma diagnosis is best based on clinical symptoms, test results (ECHO, lung function etc) and blood work. There is no one test to rule scleroderma in or out. I have diffuse with a negative ANA, negative SCL-70 and normal rheumatoid factor, based on my blood work there is nothing wrong with me. I also had a biopsy and it was used to confirm the diffuse diagnosis based on clinical symptoms, a biopsy is not just to confirm morphea.
Whether you have scleroderma or not, for a doctor to assume no news is good news in respect of test results is bizarre and frankly worrying. Let us know what they say after the weekend and if you don't get a satisfactory answer you may want to consider getting a new doctor!
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Posted 17 April 2011 - 02:17 PM
I truly sympathize with you and being left in limbo over the weekend . However, during this time, you have a chance to get more information, as you are doing right here.
Hopefully, you are also re-considering your feelings about whether or not you want to remain in the care of this dr. It's so important to have confidence in the dr we are trusting with our care and with what you have mentioned so far, of course you are right to question how invested this dr is in your care.
I am hopeful that you will receive answers to all that is disconcerting to you soon, as it is no consolation when a dr is less than forthright with a patient.
In the meantime, arm yourself with questions and expect answers,which you so greatly deserve, when that phone call finally come
Posted 17 April 2011 - 04:22 PM
All the best Christine
Posted 19 April 2011 - 05:43 PM
As promised I am back to update. So today at work the local hospital called and told me they were doing the registering for my appointment on Thursday. My response was great...lol...What am I having done? They called before the doctor's office called me. So I guess they are moving forward with the heart testing, which will be this week. When the doctor did call I inquired about this and she stated that they wanted to continue the baseline testing. She also stated that she had been talking with the specialists and they told her that even though the blood tests were negative that did NOT rule it out. The heart testing is next and then on May 5th we will discuss the results and make a plan to get me in with the specialists. I informed her that although I was ok with staying with her I did want to go to the specialists as well. My comfort level would be higher with both working on this together regardless of whether it is only in the skin, muscles and tissues or more. I was very direct about that. I guess we are going in the right direction. I do realize that this is a slow process at best.
One more side note..it seems that my pulmonary tests showed mild obstruction
Guess we will talk more about that later..
Thanks for all the supports...All the best Christine
Posted 20 April 2011 - 01:59 PM
Well, the good thing is that your doctor and the local hospital are pushing ahead to get the necessary testing done and you have an appointment on 5th May to hopefully be referred to your Sclero specialist. You'll also be able to discuss the results of your pulmonary tests.
I do agree with your proactive approach with your doctor; you really do have to make your point politely (but forcefully!) that you intend to be dealt with by an expert in this complex disease ; it's a good thing you were very direct about it!
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