New Here, Partially Diagnosed

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dashlink675
Regular Member


Date Joined Nov 2013
Total Posts : 21
   Posted 10/16/2014 8:16 AM (GMT -6)   
Hi Everyone,

I've been lurking around here for a few days and there is some really helpful stuff, I'm very happy to have found it! So, I'm 23 and I've been trying to figure out what is going on with me for about 4 years now. I've been to countless doctors who all seem to refer me back to my gastroenterologist (Celiac dx in 2009) who tells me nothing is wrong with me and I just have IBS.

It has been a horrible, exhausting time trying to get this all figured out, so I finally resigned myself to just remaining sick and never having answers, and I've learned to brush off my symptoms because they are "all in my head."

Finally, a few months ago my parents persuaded me to see a Rheumatologist instead of giving up. He talked to me about Fibromyalgia and RA, and took some X-rays of my hands and feet. On my follow up, the x-rays came back fine so he said I had nothing to worry about, gave me some Celebrex and said he would run a few more labs just in case. I walked out thinking "well that was a waste of time again" but he called on Friday and my ANA came back high (1:640 speckled, 1:320 homogenous, anti-dsdna, ra factor, anti-sm all normal) and he said that with my symptoms he suspected either Lupus or Mixed Connective Tissue Disease and wanted to get me started on Prednisone because it would start working faster than everything else.

I spent a few days in denial because after all everything is just "all in my head" right? How could I actually be sick? I finally started the Prednisone 15 mg on Tuesday and luckily have had minimal side effects so far.

Here are my symptoms:
- Joint pain (hands, wrists, elbows, knees, ankles, feet, and most recently hips and shoulders)
- Numbness/Tingling (mainly in hands, arms, and feet)
- Fatigue (I still accomplish everything I need to do in a day, but could sleep 15 hours straight and still be tired)
- Recurrent infections, especially bronchitis
- Malar rash (Or at least I think it was a malar rash, I doubted myself on this too!)
- Pleurisy 2 months ago
- Anemia earlier this year, had to get infusions
- Elevated CRP over past 2 years
- Almost daily headaches
- IBS

Has anyone else been partially diagnosed like this? I feel like I am in limbo. Are there any further tests I should get done? I have met my deductible at this point and want to get all the tests I can. Also, what should I be looking for to tell if the Prednisone is working? I am trying to stay away from pain killers so I have a real sense of what is going on with my body.

Sorry for such a long post, thank you so much for the help!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/16/2014 9:47 AM (GMT -6)   
If the prednisone is working, your joint pain and numbness/tingling should decrease. If you don't find anything has changed in 7-10 days, check back with the rheumy. 15 mg isn't a very high dose.

It is very common to be partially diagnosed with Lupus/MCTD -- actually more common than not. The diagnosis itself is not the most important thing at this point -- having a rheumy who treats you is most important!

You are on the right track!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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