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kris52770

So Frustrated

12 posts in this topic

Hi Everyone, Hope all is well with everyone. So Finally after a couple of weeks. I finally got an answer from the rheumatologist. I called her and asked her if the results were in from my bloodwork. She states I mailed them to you. I never received them. She tells me that the ANA results were normal so that I do not have diffuse or limited scleroderma. I was confused by this as she had told me that the blood tests were the only way to tell. I know that some of you had said that you can still have it without a positive blood test. I mentioned this to her and the skin biopsy was postive. She stated that the skin biopsy meant morphea not the other form. I then questioned her about the kidney testing and the lung testing results. She informed me that she did not have the results but since she hadn't heard anything she assumes they are fine. That was last Friday. I was not feeling overly comfortable with these answers. I really like her but kinda feel like I was being brushed off. So out of the blue today I come home from work and there is an urgent message to call the office that she needs to speak with me. Of course I call back and they are gone for the weekend. I am not having a good feeling right now. Does anyone else have a negative blood test? Thanks for listening no one else understand the anxiety of not knowing where all the pain is coming from..... :emoticon-dont-know:

All the best, Christine

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The only symptom that I notice you mention is pain. Do you have other symptoms? Pain can be all sorts of things. What kind of pain and where? Other symptoms?

 

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.

 

Good luck,

 

Craig

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Hi Craig, Some of the other symptoms are red swollen hands and feet. Severe muscle pain. There is swelling all over my body which they have not fiqured out which is why they did the biopsy. I have Raynaud's is both legs and hands and problems with swallowing as well as stomach issues. Oh yes to complete the mess lol severe dry mouth and tight shiny skin on hands and feet. Guess it is a wait and see. Christine

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Hi Christine,

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.

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Have you considered finding a scleroderma expert. Even though the disease is handled by rheumatologists, it is still so rare that an average rheumatologist may only see 5 or 6 cases in a lifetime, and the cases are usually so unique.

 

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.

 

Craig

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Hi Christine,

 

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. :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Christine

 

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!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Christine,

 

I truly sympathize with you and being left in limbo over the weekend :emoticon-dont-know: . 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


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks everyone for the input. I really have to say that although not happy with these recent issues overall I do like the Rheumatoligist. I did find her easy to talk to and she did spend a lot of time with me in my first few appointments as well as pushing the tests for lungs quickly. I am hoping that she will stay true to her word and refer me to the specialists in Boston. I do believe that they need to be the ones to determine this. After I left that message I realized that Monday is a holiday so I guess I will wait for Tuesday. One thing I have learned is that nothing happens very quickly and I stopped worrying about what might be said. Nothing changes the outcome so I decided to enjoy the weekend. I hope everyone is doing the same. No point in :emoticon-bang-head: Life is to short.

All the best Christine

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Hi Everyone,

 

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 :emoticon-dont-know:

Guess we will talk more about that later..

 

Thanks for all the supports...All the best :emoticons-group-hug: Christine

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Hi Christine,

 

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! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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