Question:
Hello there,Thanks for your help. I did look up some of the sites, they were helpful. You are a great group of caring people. I read your post daily don’t really post much I feel like I don’t have the knowledge to help. But I,m with you in spirit and prayer. If there is anything I can do to help others just let me know. Prayer and Hugs MorningDove
Response:
On Wed, 19 Sep 2001 09:59:50 -0400 (EDT), in alt.support.lupus normjudyh…@webtv.net (morning dove) wrote: >Hello there,Thanks for your help. I did look up some of the sites, they >were helpful. You are a great group of caring people. I read your post >daily don’t really post much I feel like I don’t have the knowledge to >help. But I,m with you in spirit and prayer. If there is anything I can >do to help others just let me know. Prayer and Hugs MorningDove
anytime you can share your experiences, support, and humour, regardless of our level of knowledge, is great. That’s as much if not more what this group is about than anything else. Blessed Wishes.. KCat
Response:
one of the favored neuros here that specializes in this type of problem always does an MRA – that is an MRI with imaging of the arteries with a die. She feels it’s more telling than a normal MRI. On 18 Sep 2001 04:22:46 GMT, scroyle…@aol.com (SCroyle909) wrote: – Hide quoted text — Show quoted text ->An MRI *might* possibly detect evidence of vasculitis in your brain. It >doesn’t always though, especially in more mild cases. Many times vasculitis >associated with lupus is diagnosed more on the basis of symptoms after other >possibilities have been ruled out.
Response:
Sometimes I don’t think people realize how lupus can attack you. I’ve had lupus for 11 years now. This year its went out of control. My heart has been attacked, now face the possible of my brain being attacked. Is there anyone that is being treated with this problem. Does it ever end? I,ve also have had inflamatiom of my muscles it took me 4 months to get relief from that. Also had pluristy and dealt with that this year. What is the treatment when it affects your brain.? He wants me to have some lab test. One is a T4 TSH and check out B-12 Folate. Do these test make sense? Also I will have a MRI scan of the brain. Its says on the order SLE R/O CNS lupus. Any input would help. I guess I,m alittle depressed. Thanks Judy
Response:
morning dove <normjudyh…@webtv.net> wrote in message
news:13671-3BA65EFC-23@storefull-134.iap.bryant.webtv.net… >[I] now face the possible of my brain being attacked. Is
there anyone that is being treated with this problem?> I am. >Does it ever end?>
Is "it" the treatment or the CNS lupus? I don’t really know the answer for either, but I can say that it has been suggested by my rheumy that I’ll probably stay on Depakote indefinitely. As for the CNS, probably the safest answer would be that it comes and goes, like the other aspects of lupus. It’s hard to diagnose CNS lupus, or cerebritis, or neuropsychiatric lupus. all of which are probably the same. The MRI (or is the SPECT) might find white areas in the brain, which will tell them whether or not you are getting enuf blood to all parts of the brain. You might also have a EEG done to see if you have seizures contributing to the problem. I’m not a nurse so I can’t tell you about any other lab tests that might help. They may not have any that are really diagnostic, but I know they are working hard on it. The web sites below might tell you. I just found them I didn’t read them! <grin> When I was dx’d with cerebritis I got 60mg of Prednisone and Depakote to control the seizures. It’s been almost 3 years and I am almost off the pred but I still have vestiges of the cognitive problems the flare caused, such as a 95% of the vocabulary I had before. I say vestige because oddly, its the rarer words that I lost, and they are some of the best ones. I also say "vestige" because I just got it back and I am so proud. ;0) You’ve sure lived through a lot of pain and misery this last year. You have a right to be depressed and I hope that you are getting treated for that too. If you are depressed more than usual or have other mental disturbances, be sure and tell that to the doc, because CNS lupus can cause psychosis as well as serious cognitive problems. Here are some sites to look at, but there are many more out there that search engines can take you too. The first, and most extensive, is Andy Taylor’s very valuable site. http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm http://www.uklupus.co.uk/news27.html http://www.update-software.com/abstracts/ab002265.htm
Response:
An MRI *might* possibly detect evidence of vasculitis in your brain. It doesn’t always though, especially in more mild cases. Many times vasculitis associated with lupus is diagnosed more on the basis of symptoms after other possibilities have been ruled out. The suggestion to have an EEG is a good one. Hopefully since CNS lupus is a possibility, you’re consulting with a neurologist. A neurologist is the person who would then order other studies like an EEG or SPECT scan (also suggested by someone). As for the EEG, if you do have one, make sure it’s sleep deprived since that increases the chance of picking up any seizure activity. SPECT scan of the brain is completely different than MRI. It provides information on blood flow in the brain rather than a detailed picture of the brain that MRI gives. As for how CNS lupus is treated, that really depends on the severity. If it’s a major problem, then aggressive therapy might be recommended. My daughter went through Cytoxan chemotherapy for her CNS lupus symptoms. My daughter’s rheumatologist though says that recent studies have shown that CNS lupus isn’t necessarily as problematic as once thought. Many people with it can do very well with more conservative therapy. You and your doctor would have to make the decision regarding treatment based on your symptoms (not only CNS but other lupus symptoms as well) and the results of your testing. Sandra
Response:
morning dove wrote:. One is a T4 TSH and check out B-12 Folate. Do these
test make > sense?
Thyroid function and/or anemia, I think. All of these and the MRI are to exclude possibilities (or find what might be causing recent changes). Best, J
Response:
Dear Judy, I don’t blame you for being depressed. My last few flares have gotten progressively worse, and at times I felt there was no end in sight. The pain was so terribly that sometimes I wished I would just go to sleep and not wake up. I wasn’t depressed, although you make think that from the statement I just made, but I felt that it would never get better. I am better again though, and have been much improved for almost a year now. Other have come through things like you are suffering, so try to keep that in mind. The tests your doctor have ordered do make sense. Thyroid problems and Pernicious anemia can cause all kinds of symptoms. PA (B-12 deficiency)can account for neuralogical problems,including mental deterioration. Sometimes the Schilling test is the only way to eliminate that possibility. If it is CNS lupus,I think they would be looking at high doses of pred, if you are not already on it. Please let us know the outcome of your tests. Get on here and vent if that is what you need. We have all gone through some very tough times, and understand. Fond Regards, BJ "morning dove" <normjudyh…@webtv.net> wrote in message
news:13671-3BA65EFC-23@storefull-134.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Sometimes I don’t think people realize how lupus can attack you. I’ve > had lupus for 11 years now. This year its went out of control. My heart > has been attacked, now face the possible of my brain being attacked. Is > there anyone that is being treated with this problem. Does it ever end? > I,ve also have had inflamatiom of my muscles it took me 4 months to get > relief from that. Also had pluristy and dealt with that this year. What > is the treatment when it affects your brain.? He wants me to have some > lab test. One is a T4 TSH and check out B-12 Folate. Do these test make > sense? Also I will have a MRI scan of the brain. Its says on the order > SLE R/O CNS lupus. Any input would help. I guess I,m alittle depressed. > Thanks Judy
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