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Nellrp

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Posts: 3
 #1 
Hi all,

I was just diagnosed last week and so scared and confused. Part of it is the uncertainty of want to expect.

I saw a rheumatologist because of new onset reynuauds. Of course upon questioning, I had a lot of other symptoms. I was diagnosed with UTCD for a week and then my labs came back positive for lupus. This has all happened very suddenly. I am worried that my confusion, memory loss, and lack of concentration is from my lupus. I thought it was from stress and anxiety and just doing too much in general. I feel dizzy, have headaches, but not in any pain. I still run, go to yoga and go to work every day, but haven't felt like myself for the past 6 months. Is it about to get worse? Am I in a flare? I want to start Plaquenil asap so I can get on the road to feeling like myself again.

I'm having a really hard time listening to my body knowing what I need because I don't know what is lupus, and what is just life. I really just want to call in sick tomorrow, but want to save up my sick days in case I need them in the near future and keep them for vacation.

I am a mom of two very busy 8 and 10 year old boys, I am a nurse practitioner and work 4 days a week, and am taking classes online. I'm pretty social. Not sure if I need to make any changes now....but when?

Thanks for any advice
Nellie
redpaki

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Posts: 15
 #2 
Nellie
So sorry to hear about your troubles.  I don't think anyone can really tell you if you're in a flare etc but I totally relate to your worries about concentration and memory loss.  Without going into my entire story, let me say that those 2 problems were a big concern for me.  I started on the Plaquenil and when I was still feeling exhausted, cloudy and not at all like myself, he added methlypredisone (yuk) and eventually Imuran.  The Imuran really helped but the whole process probably took a year.  Most docs don't want to start you on the stronger meds unless nothing else works.  Just don't hesitate to let your doc know if the meds aren't helping.  It also might help to keep a diary of symptoms and have it handy at your appointments.  Good luck!
taffylinden

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 #3 

Hi, Nellie. It does sound like you have a lot on your plate, but honestly, you can take a deep breath and relax. A lupus diagnosis is not a good thing, but it's not a death sentence, either. First, did your rheumatologist confirm it's lupus, or are you worried because of the labs? Usually one set of labs isn't sufficient for a diagnosis. Some perfectly healthy people have a positive ANA, for instance.  Also, the symptoms of lupus can be symptoms of other diseases, so doctors usually track a patient over a period of years before making a diagnosis..

There's a lot of helpful information on the LFA site. Johns Hopkins also has an excellent lupus site. I'd check out both. The Hopkins site is at https://www.hopkinslupus.org/

As tough as lupus is to diagnose, it's even tougher to predict. Symptoms and severity vary from patient to patient, and so does the course of the illness. Even if you do have it--and I hope you don't--you won't necessarily get worse, and medication can help control the symptoms. Has your rheumatologist discussed meds with you? 

I wish you the best.

 

Running Momma

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Posts: 17
 #4 
Nellrp, I also have a lot of brain fog, memory loss and lack of concentration and don't have much pain. I was just recently dx with lupus but was told I had Sjogrens Syndrome 12 years ago. I haven't had many headaches but I have been dealing with dizziness for years and it has really freaked me out. I too would love to know if this is caused by Lupus?
I am feeling a lot of the same things. I'm active and generally healthy and am also a mom of two boys.
Nellrp

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 #5 
Hi runningmama! How are you feeling and how is your running? I feel like I was getting faster and then slowed down. Now that I'm on plaquenil x 2 months I'm feeling tons better and the fog has lifted! I think I may have been sick for a while. Would love to connect and discuss more.
Marisa

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 #6 
Hi, I have recently been diagnosed with lupus, I can only get an appointment with the rheumatologist in two months time. Any advice on what I can take or do in the mean time? Should I boost my immune system or not?
pianist

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 #7 
Marisa - lupus is an overactive immune system. The medications used for it try to slow it down, so don't try to boost it! There are herbs and other things out there that can be dangerous to lupus patients. The LFA homepage (lupus.org) is a good place to get the basics of lupus and how to take care of yourself. Johns Hopkins and Cleveland Clinic also have information on lupus on their sites. It's good to learn from these while you wait. General information I would give is stay out of the sun as much as possible, wear a sunscreen every day, wide brimmed hats are good, get plenty of rest and try to stay healthy overall. Eat right and rest when you need to. Don't take anything that your doctor has not ok'ed for you.
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