Wondering what hind site has taught you about testing

[Amle]

Hello,
I am not newly diagnosed but a bit overwhelmed 🙂 (I don’t have my personal narrative or my list of meds done yet- i will). I have fought with my autoantibodies for years, trying to get a diagnosis and trying to feel better. Then after a move to WA, I started coming back with scleroderma antibodies (I think it was that the labs test differently then in NM). At the time I did not know anything about scleroderma, I think I was a bit like, “Since I don’t know about this, it cannot be affecting me.” But I have had periods where I feel better (during the summer), and I had felt bad for long enough before that without any real help from the medical community that I just ignored what didn’t seem right. I did contact RB about a year ago and got the names of the 2 possible docs that might do AP. One didn’t call back and the other I knew a friend had been to and did not have luck…and then my husband and the family had to go to Florida for about 6 months so I dropped the ball and did nothing.

Of course right around Christmas I was feeling terrible. At the same time I contact RB to try to find a doc I also contacted Dr F’s (Slero specialist not into AP) office. I got into his office so fast it was amazing! My appointment took a very long time and I was surprised and a bit taken back by my diagnosis. Mod-to-Severe diffuse scleroderma. But he also said I seemed to have other non-sclero issues going on…like maybe a broken tailbone and I have Leddenhosen–plantar fibromas. We did not discuss treatment because I need to have a few test. I also knew from Inspire not to take on the AP battle.

My beautiful, wonderful 11 year old daughter also has the scleroderma antibodies. While getting into see Dr F (not AP doc), I also had a call into Dr F in Riverside to see if he would see both my daughter and me. It took a lot of calls back and forth but I finally got a yes on the same day I had my appt with the other Dr F in Seattle. I have plane tickets and appointments scheduled, unfortunately not until the end of April, but thank goodness.

So my question is how much testing should I go thru in WA before I get to see Dr F in Riverside? I am honestly worried that my plantar fibromas are not really fibromas but cancer. (Does anyone else have these?) I think my kidney is not working right. I have heard from others that Dr F that is not into AP will say here is the door if you decide AP but I never told him I wanted treatment, my goal with him was to get clear on my diagnosis. But I also know you can have a lot of testing and learn little. I am not asking for medical advice, like what tests should I have or not have necessarily, but rather for all of you with “hind site” what did you learn on your path to here? I think for most of you going to a sclero specialist was only maddening but some of you seem to still see a specialist? Amy

[richie]

All I will say is if you are relying on Inspire –good luck !!!! -Tests in scleroderma mean not very much since they arent reliable indicators –exactly what are your clinical symptoms that indicate scleroderma
richie

[richie]

Hi As to your kidneys –simple blood tests will indicate if your kidneys are functioning properly or not –plantar fibromas are fibrous nodules on feet NEVER malignant —I would say first step is to step back -take a calm view and lay out a plan of action —
richie

[Lynne G.SD]

Hi Amie;
I used to have a wonderful rheumatologist who knew right away that I had SD and told me that everyone with this disagnosis should be taking an ACE or an ARB to protect the kidneys.It can be a life ans death situation.She told me to get a blood pressure cuff and monitor myself twice a day.If it suddenly spike I was to go to the hospital immediately.
You really should get a baseline testing when you have SD.If you don’t know what to do read http://www.sclerodermainfo.org and if still confused mail ED,he will always explain things to you,usually within 2 days.
Your 2 doctors don’t have to know about each other.I can bet Dr.F. (rheumy) will be against AP but you may need him if something goes really wrong so don’t get him mad.If he wants to put you on an immune suppressant just take the prescription paper and don’t fill it

[enzed]

Interesting advice from Lynne about what info to give to which Dr. I too don’t share my AP information (prescribed by a GP) with the rheumy – because the rheumy is too hostile to the idea. I was given an immune suppressant script by the rheumy – it’s still sitting in a folder 3 years later!
I continue to see the rheumy 6 monthly, not by choice, but because my GP advised it as a precaution against a future SD issue whereby I may need a hospital and the rheumy is the quick route to getting an admission. So it’s just a precaution really.
After 3 years on AP I am feeling much better – my 6 monthly blood tests show everything is normal now, unlike 3 years ago. Because the only medication I have taken is AP I can say with confidence it must therefore be the reason for the improvements.
I found the traditional Scleroderma websites depressing in the extreme, so full of doom and gloom, so haven’t visited them for a very long time and no plans to return. This website is cheerful and uplifting and extremely helpful advice is always available and given freely by knowledgable people – just by asking.
Richie’s advice is great – to step back, take a calm view, and lay out a plan of action.

[Amle]

Thank you all for your replies. That really is the info I was wanting/needing. 😀

[BG]

I agree with Lynne G.

Think of your visit with Dr. F in Riverside as getting a second opinion. After you’ve met with him, you’ll have a better idea about what you think is right for you and you’ll be better able to commit to a plan of action.

Barb

[Amle]

Great way to view the appointment. 😀

[Author]

Posts