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09/10/2008 11:41
Mommyof1
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 hi i'm a 20 yr old female. I recently went to my pcp for leg pain. She decided to do some blood work to check for things such as lupus(ana test), rheumatoid arthritis and lymes disease. She also noted I have a symptom called "smooth tongue" which is seen in vitamin deficiences and anemias. I have had the leg pain since I was young..I always thought it was bad growing pains that used to wake me up at night. At around 15 or so I also started experiencing things like fatigue, weakness, shakiness, headache, hot/cold chills(no fever), pounding heart. I went to the dr but was also going through a rough depression which lasted 2 years so since there was no diagnosis i thought it was maybe all in my head or part of the depression. I felt no one believed what I was saying. My dr also told me that a normal fasting blood sugar is between 80 and 110ish. Mine was 72 so sometimes when I feel weak etc it may be dropping into the 50s or 60s. I took that as the reason I was feeling so crappy because it wasn't all the time. It came and went. I figured it was something I just wasn't told when I was 15. After my appt I started checking my blood sugars regularly. They stay low around 80-95 but i have felt my sugar drop and there's a distinct difference in that feeling and that of the other symptoms I mentioned. I realized it wasn't always my blood sugar. I also had a heart murmur when I was born prematurely which my mother was told went away when i was 2. At 15 when I went through tests they told me i had one so it either never went away or returned somehow idk?!? I have always had cold hands and feet and poor circulation in my legs. After paying more attention to my symptoms and body after my appt and reading about lupus which shocked me that there was anything that explained my symptoms in the first place, i found i have chest pains which are sharp and my chest also hurts when i breathe deep sometimes. Either on the left side or in the middle underneath the breast bone. I have noticed my feet swell slightly when I'm out in the heat or on my feet alot. My toes turn purple as well as my fingers sometimes in the cold. I have seen purple dot type spots on my thighs which go away after about a week. I really believe it's lupus but have also read that 5% of ppl with lupus dont test pos. for the ana test. I am so afraid that will be me and i will not get to really find out whats wrong. If anyone is in a similar situation or has any advice PLEASE feel free to tell me! I thank you so much for listening..there is more to this but just wanted to give a little bit of detail into my situation so you all are not reading a novel lol. Thanks again for your time and god bless! -Brittanee
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09/10/2008 18:05
fibroforever
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 Unless you test positive and have very obvious symptoms, and lots of them. It can be very difficult for most doctors to want to actually diagnose a person with Lupus. I'm not sure why. That just seems to be the way it is.

My advice... Do you have insurance? Do you have a Mayo Clinic in your area? Some people don't like May Clinic. But, the thing about them is- they will keep you for about 3 days and run a series of tests. They don't ask for any of your previous records. They ask "you" questions and run many tests. Then, they tell you what they've found. And this sounds like something that you need.

I would tell my story here. But it would be a novel and I'd probably scare people away.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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09/11/2008 14:57
Mommyof1
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 i'm not sure if there is mayo clinic in our area..i do have state insurance though so everything is covered. i was thinking of finding a rheumatologist and at least asking my dr monday to refer me to one just in case...i'm really going to press the issue. i will share what is found out monday. thanks so much for the advice and support. i would love to share our stories sometime no matter how long they are...ive read enough about lupus to know it can be scary but not for everyone. id be happier with a diagnosis of lupus rather than scared for what it might bring..if that makes any sense. god bless
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09/11/2008 15:00
Mommyof1
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 I just checked and i dont see any mayo clinics in our state let alone our area...just wondering if theres anything i could do? thanks again
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09/12/2008 10:50
fibroforever
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 Do you have a University Hospital? That would be my next suggestion. If not, I'd ask the pcp about seeing a specialist of some kind. Sounds like you should have "someone" look into things further. If your pcp doesn't want to refer you on. I would think about going to another doctor for a second opinion.

Let us know how your appt. goes Monday. I'll be thinking about ya! Feel free to send me a PM anytime if you need/want to.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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09/14/2008 22:28
saralaurie
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 my daughter has lupus if you have any questions pm me and i will have her get back with you. she has discoid so it isn't affecting any of her organs. it is something she is learning to live with and she is doing quite well. she is 22 with a 3 year old and a 11/2 year old.....sara
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09/16/2008 14:37
Mommyof1
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 hi there..i went to the dr yesterday and she said my ana and esr tests were negative however my tests for iron was really low and my anemia test was pos. my rheumatoid arthritis test was inconclusive...do you think i should get a 2nd opinion or could i just not have lupus? can you have lupus without inflammation? thanks so much id love to talk with her if she wouldnt mind hope all is well take care and god bless -Brit
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09/17/2008 10:43
fibroforever
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 My opinion (and I'm not a professional)- it sounds like you might just not have Lupus. Which believe me, that's a "good" thing.

If you're still feeling that there's something seriously wrong though, I'd get a second opinion.

I've not heard of anyone having Lupus without inflammation. Usually there's a positive rheumatoid factor too.

There are many different kinds of autoimmune disorders and diseases. I still wish you had a Mayo in your area or a University Hospital, or at least someplace that would check you over from top to bottom.

Please keep us informed on how you're doing.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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09/17/2008 13:18
Mommyof1
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 hey. yeah im not saying its lupus...lupus just made more sense with my previous history and symptoms. Id love to know why i had seizures and now still have abnormal brain waves...why my son was early for no reason...it bugs me and i guess i was hoping for something to answer everything but i guess its not that simple lol. thanks for the support..i wish i had a mayo clinic too. well hope all is well as can be. ttys. thanks again.
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