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Update On Rheum Visit!

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#1 summer


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Posted 25 February 2007 - 08:26 PM

Hi Everyone,
I saw my rheumatologist today for the 1st time and not sure what to make of the visit!
She looked at my blood test results - ANA - 1600 Centromere, Checked my flexibility, looked at my hands and asked me some questions about any symptoms I was having. I gave her a list of them which she barely looked at. She then ordered some tests which I will be having this week.
A CT Chest Scan, Echo, VQ Scan, U/S Achilles Tendons on both feet and ankle,
Resp - Spirometry (2 tests) pre-bronchodilator, Transfer factor (Diffusing Capacity) and a Lung Volume body Plethys Mography, Whatever they are!!!!!!
I have been having lots of trouble with my achilles tendon on both feet moving up to the calf area for awhile now which is very stiff/sore especially upon wakening in the morning and after sitting down for awhile. She didn't think it was related at all to the possible scleroderma diagnosis (i don't know what to think of that).
She said my hands looked normal but didn't bother to look at any skin elsewhere.
I have had for about 1 year now 1.5cm raised dry skin spot on my foot that she didn't seem too concerned about.
She said that she doesn't diagnose a patient specifically on a high ANA.
If my tests are normal I got the feeling as she said I would be sent on my way!!
until any symptoms appear.
I did mention to her that a few days ago I had swelling under my bottom lip which was skin colour which lasted 24 hours and it is now slightly raised with a line sort of vertical whether this is related to scleroderma I don't know. I also mentioned about having SOB. Anyway I guess I'm going to have to wait and see what she says. She said it could be possible scleroderma but was looking for symtoms more in my hands than anything else.
Your thoughts or opinions would be greatly appreciated! :
Kind regards

#2 anawallar



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Posted 25 February 2007 - 11:19 PM

Hi Celia:

I have heard a lot of people say that it took them a very long time to be diagnosed. I was diagnosed very fast because of my sympoms. I have learned that only you know your body and exactly how you feel. If the doctor sends you away after the results, then you go see another doctor. Even though I have scleroderma, my test have come out good so far. It doesn't mean that I don't have the condition, just that it's not acting up at the moment.
Hopefully you will never be diagnosed with this illness but, like I said before, if you don't feel well, keep on looking for a doctor that will give you an answer.
Kepp us posted.

#3 LisaBulman


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Posted 26 February 2007 - 03:01 AM

Hi Celia,
Unfortunately many people go years before their dr will give them a difinitive diagnosis. Some people here have other diag. like MCTD but many of their symptoms are like scleroderma.

Try not to panic, have the tests done and see what the results are.
Resp - Spirometry (2 tests) pre-bronchodilator, Transfer factor (Diffusing Capacity) and a Lung Volume body Plethys Mography, Whatever they are!!!!!!
These are part of a pulmonary function test. You will be breathing into a tube and machine will calculate your numbers and be able to see if you have a diminished lung capacity. The CT scan will show if you have lung fibrosis.

It is so hard to go through this stage of the game, but try to be patient. If this dr isn't the one you feel comfortable with then I would recommend you find someone else who will listen. Communication is a huge part in dealing with this!

Please let us know what happens with the testing.

Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#4 Heidi


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Posted 26 February 2007 - 03:30 AM

Hi Celia,

I have been basically undiagnosed (I am diagnosed with Undifferentiated Connective Tissue Disease) for 5 years although I have many symptoms consistent with Scleroderma and my rheumatologist has said he thinks I will end up "looking like a limited Scleroderma patient"...BUT I don't have much, if any, skin involvement. So, even though I meet criteria for CREST (a form of Scleroderma--I have Raynaud's, Esophageal Dysmotility, and Telengiactasia), my rheumatologist won't actually give me the diagnosis until (or if) I develop skin involvement. BUT, he does treat my symptoms (joint pain, parathesia, fatigue) and I see a GI specialist for my digestive issues. Thus, try not to focus too much on getthing THE diagnosis, but on getting the treatment you need to releive your symptoms. And, please, do keep us posted on the outcome of your tests.

Warm wishes,

#5 Pam



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Posted 26 February 2007 - 04:40 AM

Hi Celia! I was diagnosed just over a year ago with diffuse sclero and have ILD. One of the symptoms that convinced my doctor that I had it was the tendon friction rubs in my ankles and feet. The collagen builds up on the tendons and when they rub together they can become inflamed and really throb. Sometimes you can even hear them rub together. It has kept me up at night because it can be painful and ache if I have been on my feet alot. I now have them in a few of my fingers and my left wrist along with my calves. I hope this helps and let me know if you have any questions. There is a mention of the friction rubs on the Intl. website. Take care, Pam

#6 kramer57


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Posted 26 February 2007 - 05:05 AM

Hi Celia,

I guess maybe I was lucky to get diagnosed with Scleroderma so quickly. I have achalasia (no motility in my esophagus) for the past 13 years or so, but didn't see a Rheumatologist until last fall. The first time he met me he looked at my hands and pointed out that the fingers are getting shiny, and they are cold all the time so he diagnosed me with Raynauds.

Even though all my blood tests were negative, it has been his constant opinion that I have Scleroderma based on the achalasia and Raynauds. In all his documentation he puts Scleroderma as the diagnosis.

He confirmed it by doing a finger biopsy. Maybe that is an option for you and your rheumatologist to consider if your hands start changing.

I'm glad you're getting Pulmonary Function testing! I have asked my doctors for that, but I smoke, so I keep getting told just to quit smoking. I've been told for years I have "asthma" from smoking but it's gotten worse, and now I have a dry cough when I inhale, more SOB and I'm concerned so I am going to keep asking for PFT.

When I am sitting and I stand up, my ankles "lock" and crack and hurt, then I have to roll them around before I try to walk, or they won't move right, and it hurts. Is that anything like the "friction rubs" you folks experience?


#7 Sweet


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Posted 26 February 2007 - 05:17 AM


Actually your visit sounds very similar to how EVERY one of my rheumatologist appt. go. At times they seem to brush by symptoms we think are important and that's bothered me in the past, but secretly inside they seem to know what's going on at a glance - order all the right tests, and then you have your answers in the end! Sounds like she orderd some great tests and I have a feeling you will get some answers from all of this. Don't fret yet, just take the journey through all of the tests, then re-group.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#8 nan


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Posted 26 February 2007 - 05:21 AM

Hang in there! Getting a diagnosis can take a long time. I was finally diagnosed with CREST, Sjogren's, and Fibromyalgia in Dec.06. My ANA was high, but the other bloodwork was normal. My doctor gave me the diagnosis due to all of my symptons and some skin issues. Take care!