Initial onset of SD

[Maz]

[user=2703]RickinCA[/user] wrote:

Mainly he ordered another panel of blood tests, calling it a fishing expedition. I left feeling (and if ever the term appied) cautiously optimistic. Just having a little of the weight lifted is making me feel at least closer to “normal” than I have in weeks.  I'm not sure which is worse, the problem or the stress that I feel.  

Rick, thanks for your update and glad you came away feeling as if you're getting a thorough work-up. This is a very good first step. 🙂

Know completely the feeling you're describing, too…not knowing what feels worse – the stress or the disease. It's all a part of the process, these early steps, and they can only be taken one at a time. In the meantime, just be kind to yourself – eat healthy and rest as much as you can while you wait for those results. You're going to be on your road back soon and then we'll all be looking fwd to your progress reports!

Peace, Maz

[SusanSD]

Rick,

     My first symptoms of SD, way before I was diagnosed (and that's another story), were swelling of my hands, and then my feet also. The swelling was all over – my face as well.

     Once the second rheumy diagnosed me, I took the conventional medicines for almost a year, including prednisone, which was the only one that helped. My symptoms continued to progress at an alarming aggressive pace – faster than most people's systemic sclerosis. When I realized that between the disease and the sice effects of the medicine and the “writing on the wall” (the outcome I was heading toward), I decided I had to take charge of my health and beat this disease because I was not going to leave my infant and toddler motherless within a few years.

     I did sit on the fence about AP for a couple months but decided this was my best chance (I am a researcher so I pored over all sorts of research studies). I gave AP a year but saw progress by month 3 and 4, and definitely bu month 6, and that's when I added IV clindamycin every 6 months.

     I think I narrowly escaped internal involvement because I was starting to have GI symptoms – severe cramping. The expert SD researcher urged me to take my blood pressure daily because that's a precursor to renal crisis. 

     I lost valuable time being the good patient, waiting for a diagnosis, which ultimately was wrong “seronegative RA”. Then I wasted more time by trying the conventional rheumatology medicines which can result in other problems like stomach bleeding, visual problems, and GI symptoms.

     Learn all you can about AP, boosting your immune system, and then donate to RBF as you get your life back. It's slow but effective.

[Author]

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