I hope someone can shed some light on what is going on. I have recently received some more blood work and it shows my ANA again at 1:1280 and this time instead of speckled and homogenous, it is specifically homogenous. My urinalysis was abnormal. I have ulcers in my mouth, extreme fatigue, have lost 70 lbs in a year, have tingling in my face, arms, and legs. I also have raynaud's phenomenon, IBS, and my muscles in my arms and legs feel like they are so tight that they are drawing in. The other day I was sitting on the couch and my legs started jumping :confused: and then the next day I was singing in a concert and my arm holding the microphone was shaking uncontrollably that it took my other hand to help steady it. By the way, i wasn't shaking from fear ( I have been singing since I was 5) I was shaking so bad that I almost couldn't stand up. Is this supposed to happen? I have tendinitis in my shoulder and arthritis in my wrists and foot. I feel like I am dying some days. I am currently on plaquenil and prednisone. I am now tapered down to 5 mg of prednisone and everything is getting worse. I went to the beach with my family but stayed out of the sun most days. I wore a big hat, wore 50 spf sunscreen, and wore long sleeve shirts even under the beach umbrella. What is wrong with me????? The doctor is treating me as if I have lupus, but I don't know. I had an MRI come back with a few lesions on my brain and spine. I am so confused. I am only 30 years old and have two small children. What is the rest of my life going to be like when some days I can barely get out of bed? I am scared. Can someone help with advice or answers?

Dutchess99

I am sooooooooooo sorry that you're having to go through this....If you DO have Lupus the good news is that you will have good days once they get it under control....My best advice to you in the meantime is to STAY OUT of that sun....Please please please....I know you're wearing sunblock and hats but you're still putting yourself in direct sunlight by going to the beach..At least wait until this flare is controlled and then ask your doctor if its okay...I am also 30 years old and I've had lupus since I was 14....I don't even bother going in the sun at all and my Lupus is considered 'inactive'...When I absolutely have to, I wear block etc...Right now I'm on Plaquenil 200mg twice a day....It WILL get better though...It's just really really hard at first...It takes a while to diagnose...It took them over a year to diagnose me...Stay on your doctor letting him know when you're not feeling well so he can adjust your meds if need be....I hope this helps....Keep us posted...Take care!

Thank you for the advice tddeyne. I am at my wits end. It has taken 17 months for them to start taking me seriously and when they finally started blood work and saw how high my ANA was and how sick I had truly become, they were in "oh my gosh" mode. Now I am having a bad flare. I go to the rheumy today. He should have my MRI results and he is going to do more blood work ( I wonder sometimes if they realize how much blood I have given in the past 17 months). I will keep you posted. :wave:

Hi again Dutchess,

Bless your heart! I know how bothersome it all is. I was 48, living in TX, and my kids mostly grown when diagnosed, but there's no good time. I now live in VA where the sun is kinder, but still stay out of it when I can.

It's possible that this flare is because of the recent visit at the beach. I've had more than one friend with lupus who has had a flare caused by sun exposure, even one doing yard work in early March in TX. I try to avoid the sun like the plague as I don't choose to invite a flare.

You did take good precautions while at the beach, I just wonder if it's best to do as my doctor said - "Don't plan a day at the beach".

Wishing you well - Barbara :wave:

okay just back from the rheumy and he says he still is unsure about what is going on. He knows I have an autoimmune disease but he is not sure which one. He did a muscle test on me and it didn't turn out good so he is sending me for an MRI of my legs in the hopes he won't have to do a spinal tap and muscle ***** test. He mentioned the autoimmune disease myositis or polymyositis. Anyone heard of it? :confused:

Hi. I wish I could tell you not to be scared, but I know you can't help it! We all are scared, a lot, at some point or another. Avoid the sun at all costs. Avoid excessive heat while you are at it. You are more useful to your kids if you are not killing yourself with sunlight. I've lit up my backyard and do all of my activities after 7pm. My neighbors think I'm ridiculous, playing badminton in the dark, but who cares.

As for your tests, I am concerned that your doctor is not giving you the attention you deserve. I would get a second rheum. involved ASAP. I would also see a neurologist ASAP. Lesions on your brain and spinal column could be CNS lupus - central nervous system lupus, or they could be nothing at all (remember that - could be nothing!). Your muscle tightness could be skin tightness (scleroderma), or NOT! Your shaking could be Multiple Sclerosis, or NOT! But I certainly would not let any of this continue with shouting through the hallways of a teaching hospital with a lot of specialists around.

Please let us know what you learn. I'm not too religious, but I am praying for you. Most importantly, you need a diagnosis to make sure it is not something that requires immediate medical intervention. Please advocate for yourself and start making demands!

Jennifer