Nervous System Symptoms - uctd

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acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/9/2015 2:19 PM (GMT -6)   
Hey everyone, I haven't been doing too well lately so I haven't been here. I'm diagnosed for now as having uctd with lupus like symptoms but in the last few weeks I've been developing some more nerve related problems so I'm being scheduled for an mri to check for brain lesions.

Two weeks ago my entire right side went numb for several hours and this has happened twice more since then. My speech is terrible with slurred words, completely wrong words and mixed up words within a sentence. I've also been experiencing migraines with aura and sometimes the aura without the headache. Within the same time frame I had three days where if I sneezed I was incontinent (sorry if that's too much info) and that has never happened to me ever so it was pretty unnerving. I'm also having trouble swallowing and things are getting stuck in my throat. My fatigue level has now sunk below the depths of cannot move I'm confused all the time and my eyes are so blurry.

My doc is crossing her fingers that it's the migraines that are causing the problems and hopefully it isn't any thing other than that.

I'm just wondering if anyone else has experienced this and if it seems like a migraine thing or a cns lupus thing or an MS thing or even some other thing. Preferably a temporary and not serious thing please!

It will likely take a month to get in for the mri. I really can stay just diagnosed with uctd, I'm okay with that! I also really hope this post makes sense.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2015 6:04 PM (GMT -6)   
Scary....
I don't know what's going on, so I hope it's something that can be corrected easy and quickly.

Best of luck.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/10/2015 3:36 AM (GMT -6)   
Thanks Joy, so do I! I hope you're doing alright :)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/10/2015 7:28 AM (GMT -6)   
The Dr is crossing her fingers and it takes a month to get an MRI!!!

Have they considered strokes, or mini-strokes? This doesn't sound like anything to wait a month with!!

Are you on any meds in the meantime?? Can you see another Dr?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/10/2015 3:58 PM (GMT -6)   
That's Canada! Maybe if I went to the hospital with it they may have done it sooner? It didn't feel like an emergency, just unsettling. I've been trying to not be scared, don't say stroke! Wouldn't a stroke or mini stroke be like bam! I just had a stroke!

Now you're just freaking me out Lynnwood!

The doc was concerned, maybe she put a rush on the mri. If I don't get a call with an appointment in the next couple of days I will call. Alternately, if my numbness comes back again I will go to the er and see if that gets me an mri sooner. Quite honestly I don't really want to know what is causing it.

I'm on plaquenil, have been for about a year now.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/10/2015 6:25 PM (GMT -6)   
Yes, you DO want to know what is causing it, because you want a remedy before it causes something worse!!!

This doesn't sound like anything it's safe to ignore.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/10/2015 7:39 PM (GMT -6)   
I know, I'm just tired of tests and scares and feeling crappy. Seems like in the last five years its always something. I will follow through, no worries there. Thanks for your concern, it's appreciated :)
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/10/2015 8:19 PM (GMT -6)   
Being lupus survivors we get tired of feeling like voodoo dolls. But it is for the best.

I'm thinking of getting a shirt made saying " Doctor's Voodoo Doll".
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/16/2015 5:51 PM (GMT -6)   
I think you could likely get a few of those shirts made Joy, I would certainly buy one!

The drs office called this morning. Something must have shown up in either my blood work or urine so now I have to go back and see her Friday. It was standard bloodwork to check my kidneys before the mri. So what, now is there something wrong with my kidneys too? Yeesh. Like the mri for my brain wasn't enough to worry about. :(

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/20/2015 4:21 AM (GMT -6)   
So my white blood cells are doubled with no obvious infection to explain it. So weird. At least my kidneys are ok! (happy dance)

My mri is scheduled for July 16th.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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