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Thread: Anyone with cns lupus or neuro problems due to lupus???

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    Question Anyone with cns lupus or neuro problems due to lupus???

    Hi all - hoping this post finds everyone flare free and feeing Fabulous. My question is stated above as I am in a HORRIBLE flare with some serious neurological problems such as seizure-like events, heavy duty leg issues (numbness,involuntary muscle spasms, pain, feeling of coldness), severe weakness(too weak to do much of anything), intense pressure-like headaches and eye pain, and More than usual brain fogginess/memory issues. I saw a new neuro last week and he has - thankfully - ordered a TON of tests.
    But, I was wondering if anyone here has had some similar experiences. My office neuro exam showed right side weakness and a positive Babinski reflex?I am also loaded with livedo reticularis(WAY more than usual) and he said that by his exam he can tell that there is DEF something going on, but he is not sure WHAT yet. Had EEG done which was asbnormal as well, but showed no definite seizure (having another one done).
    In the past, I have learned more about my disease from my fellow Lupies here, than in most any doctors office, and was just hoping someone could shed any light on the situation. Im SO bummed because I was doing relatively well for a bit, and then BAM! Back on my butt. Pain is relentless - not much working there.
    Love to hear from anyone - will check in in a bit as going to get CT scan done (I personally think CT scans are a waste of time, unless one has a mass, etc. Not a great diagnostic tool, but, what the heck, right?)
    Thanks in advance my friends...
    Love and blessings
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hi Lauri,
    I have many of the leg issues that you mentioned - numbness, involuntary muscle spasms, pain, LOTS of feeling of coldness and my legs just "give out" with no warning. I went through lots of neuro tests back in Texas, but nothing seemed to jump out at the docs. Sadly, they just seem to dismiss most of these symptoms when I mention them. The neuro that I saw in Texas seemed fascinated that I just didn't feel the tests that he did below my knees at all. Like you, I seem to definitely have something wrong neurologically, but no doc has yet figured out what.
    Please let me know if you have any luck with this.
    Hugs,
    Marla

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Lauri,

    The presence of the Babinski Reflex in an adult is a fairly accurate indicator of cns problems. I you want to learn more about the part of the nervous system it is related to, you can google the term "pyramidal tract". The presence of the reflex on the right, left or on both sides is also a good way for the neuro to isolate the particular nerve bundles and pathways that are affected. I have the Babinski Reflex on my right side. It's amazing what a neuro can learn from seeing how your big toe reacts to foot stimuli.

    As you probably know, my cns problems are a direct result of de-myelinization from MS. However, my Neuro and Rheumo both agree that it can be difficult to differentiate between cns problems from MS, and cns problems from CNS Lupus. The symptoms you mention can all be caused by CNS Lupus. One test that you will most likely have is a brain MRI. Both CNS Lupus and MS will show abnormalities on an MRI for most people. I take a rather effective drug called Neurontin, which can be prescribed for nerve related pain. For me there are few side effects, and the drug does help with much of my CNS related pain and odd sensations (I'm always feeling like I stepped in a cold puddle of water). You could ask your neuro and rheumo about Neurontin.

    Just so you know, I have had serious cns problems, including loss of control and all sensation in my right leg with a hard fall as a result, and terrible neuropathic pain, and it has all been controlled quite well by Methylpred IV infusions and Neurontin. There are many treatment options for cns symptoms and pain, and they can be really effective, so have hope! There are ways to control this. It sounds like you are already on the righ track with the battery of tests the neuro has lined up for you. Most of the tests you will probably have are for the most part easy, and relatively painless. Some can be a bit uncomfortable and boring as hell, but for the most part, it's easy stuff. I know the waiting and worrying sucks, but you can handle this.

    Rob

  4. The Following 3 Users Say Thank You to rob For This Useful Post:

    BonusMom (01-19-2010), laurid8967 (01-19-2010), Nonna (01-23-2010)

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    Thanks to both of you for your responses. The Babinski thing was on the right as well. Just had the CT scan and go for MRI Friday. I have gotten alot better at waiting - Thank You God - having gotten used to it over the past few years. Rob, you are always a wealth of info - thank you. Im feeling ok about everything and am SO grateful that I have a doc that is interested and thorough. It makes all the difference in the world. Ty both again
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    As usual, Rob came through again....what great information he shared with you. I just wanted you to know that i am sorry for this horrible flare and all of your present issues. I hope you have a peaceful rest tonight and that tomorrow is better.
    Phyllis

    share a smile today

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    THank you Phyllis for the warm thoughts.. Rob is staight up!
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    i have some neurological problems too. rob's post is great. It helped me too. Are you both right handed? I'm left handed and all my weakness is on that side. My neuro has been treating me with mirapex for the last year and it has cut the tremors (shakes) in half. I take tizanidine at night to allow me to relax enough to go to sleep. I used to ask why do I have all these different medical conditions. then in December my rheumy said You have Lupus. the Lord answered me.....

    Nonna

    Lauri I also have the Serenity Prayer tacked up right in front of my at my desk at work. It does help to read it. Also Mother Teresa's quote of Matthews gospel: I know the Lord doesn't give me more that I can handle, I just wish he didn't trust me so much. Here's a cyber Hug!



    Obviously I'm not sleeping tonite though
    Last edited by Nonna; 01-23-2010 at 01:58 AM.

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    I would like to add that when I had my MRI brain scan they did detect some minor inflamation, I never got much more information than that. I have had some serious memory and consentration issues, headaches. It is kinda interesting that I read about this twitching thing, not bad but I just thought it was me, haha. Once in a while I feel some numbness in my toes but other than that I always seem to run on the warm side, I sweat like a pig in moderately warm temperatures with minimul activity. I pray that all gets gooder. God bless, Jim.
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

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    Hey Nonna -
    Thanks for response and sorry you have to deal with these issues too! Too funny though - my neuro said the same - With Lupus anything goes. And about Mother Thersa's quote? A friend gave it to me lsat year in a plaque form and its hanging in my living room!!
    Stay steady
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by scubagramplit View Post
    I would like to add that when I had my MRI brain scan they did detect some minor inflamation, I never got much more information than that. I have had some serious memory and consentration issues, headaches. It is kinda interesting that I read about this twitching thing, not bad but I just thought it was me, haha. Once in a while I feel some numbness in my toes but other than that I always seem to run on the warm side, I sweat like a pig in moderately warm temperatures with minimul activity. I pray that all gets gooder. God bless, Jim.
    I'm the same way Jim. I run warm all the time, and any exercise, even in cold weather causes neverending sweats and overheating. For me, it's an effect of MS. I can sit in front of an A/C unit blasting cold air and I still don't cool down. Takes an hour or two usually to cool off. I'm just glad I live in Maine now, and not Arizona.

    Rob

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