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I have a quesiton. I go in tomorrow to the neurologist because I have been having problems.

My questions is how what are your sx and how long have you had this?
What medication are you taking and how does that help?
I am having MS like sx with brain fog and memory problems.
I am totally scared. Can they do anything to treat NPLSE? Does it show up on MRI?

Thanks
Mindy
 

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Hi Mindy,

My symptoms are like MS also. I have had Lupus for over 20 years and it wasn't until 3 years ago that anything showed up on the MRI. The MRI shows white matter like in MS but it is not in the Dawson's fingers pattern or in the area it would normally be seen. It has a similar effect though since it is in the frontal lobe that controls memory and balance.

During the years Prednisone would help with any major flareups I would have. Three years ago that wasn't enough and Cell Cept was added. It helped for awhile, but then my symptoms started to escalate again. Next Rituxan was added. Rituxan has helped the most with my regular Lupus symptoms, cognitive issues and some balance issues. It did not help the Neuropathy however.

Things aren't like they were prior to 3 years ago, but I manage fairly well. Just like anyone with Lupus I have to pace myself to keep it all from flaring up again. When I don't all the symptoms sneak back. It can be scary at times when you see yourself loosing control of your bodily functions. I found talking about it really helps. Once my fears are out in the open I put them behind me.

Good luck with your appointment tomorrow. Let us know what the doctor says.

Take care,
Lazylegs
 

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Hello Mindy

Your anxiety is very understandable - it's the same with any consultation with a new doctor and even more when embarking on the diagnosis process with all the unknowns and fears. I think conditions that appear to affect our brain are particularly distressing because our brains are the core of our being and we fear loss of self control and losing our Self more perhaps than anything else.

Getting a diagnosis can take a very long time especially with something as potentially complicated as NPSLE when there is a wide variety of possible symptoms and several possible causes, some of which might not be directly lupus related such as MS or infectious diseases
My response to your previous post gave an idea of the breadth of symptoms.

http://www.thelupussite.com/forum/showthread.php?t=68566

This link indicates the sort of problems which might be experienced by those whose central nervous system has been affected by vasculitis, or inflammation

http://www.cnsvfinc.org/Default.aspx?pageId=28187

MRI's are but one of the many sorts of tests that might be used to identify the nature of the problem and also the cause. There are some conditions that can't be treated but need management such as irreversible damage caused by strokes, and there is a range of medicines used to treat disease and reduce the causes and future risks depending what the cause is and how severe disease is as well as individual response

Sometimes the symptoms are treated with medicines that are used for other diseases, for example antidepressants have a role to play in some CNS symptoms not directy related to depression as such. Similarly anti epileptics can help with symptoms that are not epilepsy.

I understand your need to identify, but right now you don't know who exactly to identify with and I don't see that getting several accounts is any help to you. You might never experience what the repsonants have. It will be more help when you have a better idea what you yourself are dealing with.
Similarly there are some remarkable stories of recovery - people who have been in wheelchairs facing a very dim future who having been correctly diagnosed and suitably treated now find their lives transformed. Th e chances are good that there will be helpful treatment for you and also with the information available these days you will get the best treatment available.

I hope you will find that this neurologist is up to date with lupus and APS and also that you get on well with him, that he is kind and puts you at your ease and explains well. You might have to see an MS expert and also a lupus expert. I'm afraid that getting tested and waiting for results is a usually a lengthy business, so take it step by step.

I don't know if anybody is going with you but if not take notes and when the consult is drawing to a close, go over them with him - we always forget what was said. Ask what tests are going to be done. Taking notes also gives you time to think and react to what is said and paces the consult nicely. I hope the results of whatever tests the GP did will be available for him tomorrow.

Lots of luck - let us know how you get on.

Hugs
Clare
 
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