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All communities will be placed in read-only mode (you will be able to see and search for posts but not start or reply to discussions) as we conduct maintenance. We will make another announcement when posting is re-opened. Thank you for your continued support and patience, and if you have any further questions, please email

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First time
An_246049 posted:
Hello everyone: After several years (two years actively) I have been diagnosed with systemic lupus which I am told is affecting my CNS and brain. For almost two years, I have been seeing a neurologist for possible MS (MRI-several, EMG, EEG, vision test, lumbar puncture, etc) I have several old lesions on my brain but no active lesions. I

I have many symptoms, right now the most prominant are joint pain expecially in R hip, rash on my arms, feet and some of my legs, burning and pain in my muscles (nerve pain and cramps) spasms, colon problems, bladder hestitancy, feeling flush alot, headaches, nerve pain in face, side of head and throughout my body, cognitive issues, etc.

I am somewhat confused how I can have so many neuro symptoms and have lupus. Does anyone else experience this? I have vertigo, nausea, so tired.

Rheumatologist/immuniologist has put me on Plaquinal 400mg per day, says it is slow acting so it may take a few months for me to get better. What is four more months after I have waited for
I have a good attitude, great faith and a great supportive family.

I have been following the MS WebMD for over one year now and everyone made me feel like I was not crazy and was very encouraging. Hope to find the same here. Guess I would have to say it has not really sunk in yet but I;m getting there.

Dr says I will have to continue seeing my neuro as she will help him manage my care..understandable. Today, I am very tired and you have days like that.

Sorry so long, Thanks for letting me express what I can remember to think. I also have a good sense of humor..isn't that good

Elizabeth_WebMD_Staff responded:
Hello and Welcome J -

Sorry to hear of your diagnosis, but glad to hear you finally have answers.

While waiting for other to pop in just wanted to welcome you!

If you haven't already found this, our Lupus Health Center may help answer and spark questions for your rheumatologist and neurologist.

NanaJudy6 replied to Elizabeth_WebMD_Staff's response:
Expecting response but nothing so far...
lupycakes replied to NanaJudy6's response:
Hi nanajudy6 and welcome!

Sorry about the delay in answering - the board has been slow lately. I have little time during wedding season ( I make wedding cakes) and if I have time, I fall asleep! Ha

Lupus can cause your neuro problems you were describing. Plaq does take awhile to fully build up in your system but you might notice some improvement immediately. I did anyway.

Feel free to ask questions or whine if you need to. We are all in the same boat.

Hope you get to feeling better soon!

NanaJudy6 replied to lupycakes's response:
Thanks, Lisa..I can't say that I ahve noticed any difference yet but am very hopeful that I will soon. I will be keeping in touch.


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