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Hello Everyone...newly diagnosed

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Posted 4/23/2010 12:04 PM (GMT 0)

Greetings from Oklahoma!

             I have been reading information in this forum for a while but have never joined one before so I was a little apprehensive. I have been battling the medical system for the past five years trying to figure out what is wrong with me and finally received an official diagnosis of Lupus this week. Not really good news but I was overjoyed that this "condition" I've been living with finally has a name and a course of action. My PCP and I have pretty much known for the past year it was probably Lupus but its like trying to move mountains trying to get into a rheumie around here.  I waited on a waiting list for 5 months to see one, only to have them call the morning of my appointment to say the doctor had the flu so they needed to cancel my appt and it would be another 4 months before they could get me another one. So frustrating! Anyway, sorry for the long post...and please have some patience with me while I learn the ropes with this forum stuff. I'm hoping to make some new friends that can actually to relate to the things I'm dealing with.

Have a great day all!

Jennifer

Posted 4/23/2010 12:24 PM (GMT 0)
Welcome! This is a great place for information and support! I haven't been formally diagnosed, but have decided that I either have Lupus or I'm insane! Either way, I hope the rheumy I'm going to see Tuesday can give me some answers. I joined the forum in October. I'm kinda in and out of here depending on how I feel, but everyone has been so nice and helpful. Very glad to have everyone on here!

Happy Sharing!
Posted 4/23/2010 1:33 PM (GMT 0)
Hey Jennifer! Welcome to HW! Glad to have you have joined yet sorry under your circumstances. Sorry to hear you have been diagnosed with Lupus. Wow, you really did have to wait a long time to see a rhuemy. I am supprised the wait was so long after they canceled on you. That is plain redicilious. Anyway...I look forward to getting to know you and I think you will find what you are looking for here! Friendship and Support :)!
Posted 4/23/2010 2:37 PM (GMT 0)
Hello Jennifer... and welcome...
Where in Oklahoma are you from? I am from Weleetka originally... I go to a Rheumy in Tulsa.. He is great.. are you near there?????
Posted 4/23/2010 4:53 PM (GMT 0)
welcome to the board where in oklahoma are you? i had a fantastic rheumy she was amazing and she moved to oklahoma so i had to find a new doctor... just curious if she may be close to you...
Posted 4/23/2010 5:20 PM (GMT 0)
Thank you for the welcome's! I am about 15 minutes outside Oklahoma City. I was shocked when they told me it would be another 4 months...needless to say I didn't reschedule with them. I was literally in tears from the frustration and disappointment. I'm waiting to hear when my appointment is with the McBride clinic in OKC. I don't know which dr. I'll be seeing but have heard great things about that clinic. The doctor I've currently been seeing is Internal Medicine, he made the diagnosis based on my many symptoms and a positive anti-DNA antibody test which he said is almost exclusively found in people with lupus. Thank you all so much for taking the time and interest to respond to my post...I really do appreciate it.

Jennifer
Posted 4/23/2010 5:49 PM (GMT 0)
Hi! Jennifer,
Welcome, and more hellos,
We are so glad you found us, and so many of us know just what you mean about finally knowing. We are here at all hours of the day and night, so 'keep us posted"
hug,
suetoo
Posted 4/23/2010 10:55 PM (GMT 0)
Thank you Suetoo :) It is so nice to know I'm not the only one in the world going through this. Sometimes it feels that way.

I was just wondering....have any of you experienced upper left abdominal pain during a flare? If so, what was the cause? Just about everytime I flare up (along with the dozens of other things that go haywire) I get this pain in my upper left abdomen. Just below the bottom of my rib cage. Its not excruciating but if I move around certain ways it gets pretty sharp. My doctor ddn't seem to have an explanation and kind of blew it off when I asked about it.
Thanks again for any information or advice you can offer.

Jennifer
Posted 4/24/2010 3:20 PM (GMT 0)
Hi Jennifer. Your post caught my eye. I had that pain accompanied by high amylase level (bloodwork) and after several tests, it was decided I had lupus induced pancreatitis. Quite painful. Hope you feel better, soon!
Posted 4/25/2010 1:16 PM (GMT 0)
Hi Fran,
My PCP checked my blood levels related to my pancreas about 6 months ago and they were normal. I had some cysts on my ovaries and she said that was what was pushing up and causing my pain. However, I had surgery to remove the cysts in September and the pain still comes and goes. Lymph nodes throughout my body swell up when I am flared up too so I'm starting to wonder if it is related to my spleen. Oh well, I guess we probably all have countless stories of unexplained pains...sometimes I think I'm going crazy LOL.

Jennifer
Posted 4/26/2010 3:10 AM (GMT 0)
Hey there! Greetings from Oklahoma as well. I'm living in Tulsa and am new to this whole Lupus thing. I don't know if any of the forum members have experience with any of the T-town rheumies... but I have yet to find one worthwhile. My first was Dr. <snip>.... he had zero bed manner and was borderline negligent. I recently saw Dr. <snip>... who was odd to say the least. I have an appointment with rheumie #3 on May 17th, Dr. Newell. I have heard great things about her from a family friend and I'm hoping she'll be the keeper! :-)

<snipped to remove drs' names - HW doesn't want to be sued, so we can't really reference specific Dr's by name, esp. if we're unhappy with them. Thanks>

Post Edited By Moderator (Lynnwood) : 4/25/2010 9:30:11 PM (GMT-6)

Posted 4/26/2010 3:01 PM (GMT 0)
This must be an Oklahoma reunion. Welcome Jennifer. I live in OKC, and Carol, otherwise known as Okie, lives about an hour and a half North of here. I saw a rheumy at McBride and currently see an orthopedic surgeon there. There's a new rheumy in town who moved up from Texas and he's wonderful & not hard to get into. He's at the Mercy clinic on North May. I've jumped around till I found a good fit for me and I love him. I hope yours works out well for you.

I'm glad you decided to join us here. Let us know more about yourself.

Pat
Posted 4/26/2010 5:25 PM (GMT 0)
Hello Possi, Lifeispeachy and Pat!

I didn't realize they were so many of us with Lupus around. Especially just in OK. Thank you all for the very warm welcome :) My husband (who is also 28 and has RA as well...what a match lol) and I live in Mustang. We moved here about 3 years ago from Southern California. Its been tempting a few times to move back when I have really been struggling with getting help from doctors. about a year ago was a really dark period of time for me when I didn't know if I was just losing my mind or if there really was something wrong with me. It seemed like none of the doctors I was going to even cared what was wrong with me much less did anything to treat the symptoms I was having. Anyway, enough whining lol. I'm much brighter and happier these days even when I don't feel good. I'm pretty busy between work and family stuff so thats why it takes me a little while to reply sometimes. Hope all is going ok with all of you...I would love to know more about all of you as well.
Have a great Monday everyone!
Posted 4/27/2010 5:00 PM (GMT 0)
Hi Jennifer, just wanted to welcome you to the board! As you can see this is a wonderful place filled with supportive people! Feel free to ask us any questions you may have. I look forward to getting to know you. Take care
Posted 4/28/2010 2:38 PM (GMT 0)
Hi Jennifer, welcome to the forum! I hope you can get in to see a rheumy faster than 4 months! I know that is really frustrating.

Looking forward to getting to know you!
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