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What to expect/first visit to rheumatologist

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#1 cats



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Posted 16 April 2008 - 01:19 PM

I will have my first appt. with the nurse practioner that works with the rheumatologist the 28 of April...I had went to a immunologists a couple weeks ago and he said my symptoms point to sclero...A limited version in his opinion. When you go down the list of sclero symptoms I have had every one of them in the last 8 years....
Can you give some advice as to what questions she will ask and what blood work/tests will she be ordering?...She will do the work up, order the tests and then I go back for his opinion....
I was also wondering if anyone has periferal neuropathy and vasculitis running alongside of their sclero....( I do)...although the immune guy said it could be another process...Of course I hope I don't have it but I have had these weird symptoms that never seemed to fit into a specific disease...I have seen cardiologists, gastroenterologists, vascular specialist, internists, lung guy...you name it....So, in any event, we may be getting to the bottom of what ails me....Your input appreciated...thanks

#2 truman


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Posted 16 April 2008 - 01:50 PM

Hi Cats:

First visit, it took a visual and she knew as I had for the past 16 years. She went down CREST and what each letter stood for. I had it. Next, extensive blood tests not done at a routine general practitioner office which will include ANA.

When results come back, they'll tell you, dose up on vitamin D, do this, do that. Mine generally will not prescribe unless symptoms indicate. One thing about Rheumatologists, they do know the disease.

As a PS; don't cruise the websites, they'll drive you crazy. This is the most sane, functional, caring, informative website I have been able to connect to.

My friends and Sclero connections and advisers here have been an invaluable resource and consolation to me in addition to the wonderful friends I have met here and will carry me through life.

I can't stress enough how valuable this site is :)


It is what it is...........

#3 Guest_Sadie_*

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Posted 16 April 2008 - 02:58 PM

Cats, I agree with Tru. They really know alot about Scleroderma. I really like mine because he takes the time to explain things. He is serious but also has a wonderful sense of humor too. This board has been great support to me! I have made so many new friends here. I always felt alone with this illness but since I joined this board I no longer feel alone.


#4 janey


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Posted 16 April 2008 - 03:46 PM

Sounds like you are really following a great diagnostic path. You've seen the right people thus far and now you're meeting "the boss". I make sure that all my doctors send their reports to my rheumatologist and when we meet we go over all reports. As far as what to ask and take in, make sure you have a written list of symptoms, when they started and current state. If you've had tests done with other doctors, have that list as well or even better, the report. My rheumatologist can access pretty much everything on the computer so I don't have to take everything in except pft results.

Write your questions down, don't trust you're memory. For some reason we lose it when we're in the doctor's office. I know I do. We do have a page of the common medical tests for scleroderma. You might take a look at that.

So many diseases have common symptoms that it's really hard to diagnose these crazy connective tissue diseases and similar ones. I really hope you and the rheumatologist do get to the bottom and get you a good diagnosis. It sure helped me when I finally knew what I had. Please let us know how the appointment goes.

Big Hugs,

Janey Willis
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#5 Karenlee


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Posted 17 April 2008 - 01:44 AM

Hi Cats,

I can tell you that on my first appointment the nurse practitioner took blood, weighed me :( and checked my breathing. Then I had x-rays taken of my hands and hips. They ordered a doppler (sonogram) on my hands and told me to see a Dermatologist. When I came back for the follow up, that is when I actually sat down with the Rhumetolgist for the consultation/diagnosis.

It may be a bit different for you since the illness varies from person to person but I wanted to give you a general idea as to what to expect.

Good luck to you.

#6 Snowbird


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Posted 17 April 2008 - 10:38 AM

Hi Cats

My family doctor did bloodwork before I was sent the the rheumatologist (but they need more than bloodwork to diagnose this disease). My understanding is that different blood patterns can point to different diseases. My rheumatologist told me that the centromere pattern points to Systemic Scleroderma (Limited/CREST)...and I believe the SC1-70 points to Diffuse Scleroderma. He also did a physical exam, checking my joints, etc. He took a good hard look at the skin on my hands and a good look at my nail beds. He looked down at them with a special light of some kind. Apparently, the capillaries under our nails are different than someone that does not have this disease. I understand that people with Scleroderma have nail beds/capillaries that are all looped and distorted (I found pictures of this on the web somewhere once).....but you won't be able to see that with the naked eye...the specialists know what they are looking for and can see it with their special equipment. He also gently 'pinched' the skin on my fingers (I think checking for swelling). I also have the red spots on my skin (Telangiectasias) which he showed me (I had no idea what they were until he showed them to me, they keep popping up and disappearing, some stay, etc). Rheumtologists are the ones that are in the know about all this bloodwork stuff too. Before I got there, my family doctor did a Pulmonary Function Test too which he sent to the rheumatologist in advance of my appointment.

Hope this helps a little.
Sending good wishes your way!

#7 Peggy


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Posted 17 April 2008 - 12:22 PM

My sclero started out as being diagnosed as Peripheral Neuropathy of the hands and feet and I still have it. I see my neurologist the same day as I see my sclero doctor at my quarterly check up. She said she can tell that the neuropathy is up to my knees with just my reflexes checked.

I hope this helps you.

Warm hugs,


#8 smac0719


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Posted 17 April 2008 - 12:32 PM

Cats..everyone has given such great advice. It was important for me to keep a log of my symptoms and how I felt on a scale of 1 to 10. Be very honest and tell the rheumatologist everything. It's amazing how we think something may be insignificant, but it can actually be very relevant to the physician. Best wishes!!
I may have Scleroderma, but Scleroderma doesn't have me!

#9 debonair susie

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Posted 19 April 2008 - 05:47 AM

Hi Cats... I can't add a thing... everyone has offered you great suggestions for your first visit!

However, what smac said, I found very profound...."It's amazing how we think something may be insignificant, but it can actually be vey relevant to the physician"

,~~, I TOTALLY agree with that statement~,~~~

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)