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Waiting Has a Way of Slowing Down Time

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Old 05-01-2010, 06:00 PM   #1
Join Date: May 2010
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RainyNights HB User
Question Waiting Has a Way of Slowing Down Time

Hi All - I'm new here and have a story to tell (don't we all). I'm hoping you will read and possibly have some thoughts to share. It's a long story so I will attempt to condense it as much as possible...

I went to my doctor's office after-hours clinic Tuesday, April 20th. I had been having some pain in my ankle for about a week and a half. I assumed it was a sprain, had been wrapping it, elevating it, icing it. It wasn't getting better so I decided to have it looked at. After an X-ray, exam, and some questions, the doctor decided it was arthritis. I'm 26 years old, I was a little skeptical at the diagnosis of arthritis at such a young age in a joint that has never caused me any trouble. That said, I have had issues with my knees and hips pretty much my whole life so it did make some sense. He also pressed on a spot on each of my legs (which felt like he took a hammer to my bone - OUCH) and said I have bursitis in my hips (I feel like the place he poked was way too low to be hip).

I asked if, while I was there, he could take a look at the rash on my face. He called it a malar rash and said it could indicate Lupus. He decided to do a urinalysis (to check for protein?) and some bloodwork to look for Lupus and Rheumatoid arthritis. He told me that results would be in the next day or Thursday and that they'd call when they came in. In the meantime, work was crazy busy for me and so when I didn't get a call, I didn't follow up - I just assumed that meant that my results were all normal.

I got a call the following Wednesday, April 28th. The nurse said that some of my bloodwork came back abnormal, indicated I could have "inflammatory arthritis," and that I needed to schedule a follow-up appointment with my primary care doctor to determine if I need to see a rheumatologist. My appointment is scheduled for this Monday, May 3rd, but I'm nervous about what they'll say and the wait is causing a lot of anxiety.

Now, for some more information:

Three months ago, I began having intestinal troubles. Some constipation and lots of diarrhea. After stool samples/cultures and bloodwork with no answers, my primary care doctor sent me to a GI who did a basic exam and said that "we'll probably never know what's causing this," told me to take meds according to my symptoms (Immodium/Miralax) and to call him in a couple weeks if I did not get better. I, at that point, felt defeated - like there was nothing else I could do and I would just have to live with it so I gave up.

I have a family history of autoimmune disorders. My mom has Lupus, Raynaud's and Sjogren's. She has also been diagnosed with fibromyalgia, COPD and diabetes.

I had brain surgery last year for Chiari Malformation. I ended up having a bad reaction to the dura patch they used and contracted chemical meningitis. After a full recovery (I felt back to relatively normal by September last year), I felt pretty good and healthy until the intestinal troubles hit in February. Also worth noting, I had my gallbladder out last June after all the antibiotics for the Meningitis caused problems with it.

I have also been diagnosed with Interstitial Cystitis and have a history of numerous ovarian cysts.

I've had a little fear in the back of my mind forever, just waiting for the day that an autoimmune disorder would show up in me. Now it seems maybe it is? Could this all be something else?

Thank you very much for reading this far. I apologize for the lengthy post - I'm just really nervous about my appointment Monday. I'm dreading it but, at the same time, it can't come quickly enough.

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Old 05-02-2010, 11:53 AM   #2
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Re: Waiting Has a Way of Slowing Down Time

Hi Rainynights....I too have multiple problems and have RA, Sjogren's along with early onset OA(now considered inflammatory), Raynauds and they currently trying to figure out if my knees are infected, or I've become allergic to the implants I have(total knee replacements). And I have diabetes and tons of allergies and all sorts of problems. It seems as if a few of us have more illnesses than everyone around us. I understand your fears. I was 26 when all broke loose with my body as well. But I'm now 58 and life has been okay.

It does sound as if you may have developed lupus. Those GI symptoms may well be part of it. My 34 year old daughter has developed Crohn's autoimmune disorder of the GI system. I feel guilty for having brought this problem into the family but I certainly didn't intend to. They say guilt implies intention so I guess I shouldn't feel that way but I do. Since you mom has all of this, you are more prone to it as I was for my kids. Don't blame your mom if you do have lupus......I know she didn't intend you to get it either.

See the rheumy tomorrow and wait it out to see what shows up in the testing. The good news is that there are so many more drugs to treat lupus and other auto-immune disorders than there were just 10 years ago. And the earlier you start treatment, the better off you will be. Don't run from it or get discouraged....educate yourself and learn to deal with it. You have the disease, it doesn't have to have YOU.

Let us know what comes of tomorrows appointment. You can handle this.

gentle hugs..............Jenny

Old 05-03-2010, 02:29 PM   #3
Join Date: May 2010
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RainyNights HB User
Re: Waiting Has a Way of Slowing Down Time

Thanks for the response, Jenny. I just got back from my doctor's appointment and he says my ANA test was positive. I'm looking at my lab results and the only thing I see is a high "Smith Antibodies" test.

He indicated that this suggests lupus and referred me to a rheumatologist. My appointment is May 14th. I'm a little anxious; I hate waiting!

Old 05-03-2010, 05:23 PM   #4
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Re: Waiting Has a Way of Slowing Down Time

We all do...we want answers now! I have a couple of specialists that it takes 4-6 months to get in to see and it drives me crazy. Not the best at being patient. Guess that makes me an impatient patient.

The 14th is not that far away and you'll do fine. But if it does turn out to be lupus, then make sure you find someone YOU really like and can talk to. These disorders do best when you see someone regularly that you are really comfortable with. My last doc I actually went to see speak for the Arthritis Foundation and then talked to him after wards. then I made an appointment and told him I was there to interview him for the position as my new rheumy. and we just talked for about 1/2 hour. I felt good about the fit between us and I've been with him now for over 15 years. Did the same with my orthopedic surgeon as I knew I was going to need him too and he's been working on me for 21 years.

It's perfectly okay to see multiple docs in order to find one you like and can be honest with...even when you feel like crap and he/she isn't doing a good job of controlling your disease. You have to feel confident that he/she has your health and happiness as their main focus.

I hope you don't have lupus. If you do, go visit the lupus board here and say hello. A good support community is important with any long term disorder.

good luck..................Jenny

PS. I'll be here on Arthritis if ever you need to talk or vent.

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