View Full Version : Newly Diagnosed - Brain Lupus

11-07-2005, 01:45 PM
Hello my name is Kellie and I have been recently diagnosed with Lupus.
I am married have 3 children and work full time.
I want to share my story to see if anyone else out there is experienceing some of the same things that I am. My lupus by the way is central nervous system. I also have Thrombositapenia (sp?), Hyperthyroidism , Chronic Fatigue, & Huges Syndrome all diagnosed previously except for the Huges Syndrome that diagnoses came with the Lupus.

Let's back things up a bit to May 28th and a little before that. For a few weeks I was having severe headaches more like pressure ones because I was thinking that they were either sinus or allergy headaches and just kind of waited for them to go away. On May 28th my whole life changed I went out to some garage sales with some friends, I was driving and passed out cold last thing I remember was another one of those headaches. I stopped breathing and my heart stopped on 2 occassions before they got me to the hospital. When in the hospital they could find no reason for any of this to happen. They ended up putting in a heart defibullator. After I went home from the hospital I starting having what they called TIA's (mini strokes) went back into the hospital and still found nothing after all MRI's, MRA's CT's and countless blood draws. No answers for what happened. I went to a neuoroligist at the U of M ( I am from Western Michigan) and they found nothing. I also went to a cardiologist at the U of M and they found that I had Long QT syndrome which can cause your heart to stop so for the time being I took that as a reason for what happened to me. While I was in the hospital they urged me to get a second opinion and also to seek out an internist because I was too young for this to be happening I am 42 so after a fashion and when I started getting the headaches again I went to an internist she sent me to another neuro who wanted to rule out things and started with MS and lupus low and behold the blood showed that I have lupus as well as the lupus anitcoagulant. So I went to a Rheumi and he has put me on prednisone for the lupus I have been on 20 mg for about 3 weeks now so I am wondering when I will get the moon face that everyone is talking about. It has helped though because I no longer have the headaches all day everyday. But I am worried about the side effects of it but I guess I will just have to wait and see what happens.
I also went to a hemotologist for the Huges Syndrome and he has me on Lovenox injections twices daily but I just heard today that I can finally stop that after 3 weeks and just use the coumadin. Does anyone else have the Huges syndrome and what are you doing for that. I have two Dr's that say coumadin life long and one that says only 6 months. I am leaning toward the life time but wonder what others have done. I know I have babbled on here and hopefully makeing some sense to someone and hopefully someone else out there is experiencing the same as I am. I feel very fortunate that I do not have some of the painful syndromes that others suffer with but am still trying to get used to the ones that I have and the diagnoses. I have gone through some depression and feeling helpless but I am sure that is "normal". I also have to discuss some of the tingling in my head and face with the doctor when I go back this week. I am thinking that maybe that could be neuropathy? Anyone know anything about that? I also have it in my hands at times.

Thanks for any light anyone can shed here.


11-07-2005, 02:40 PM

What a journey you've had these last several months!

I can't share a lot of light, but want to welcome you to this forum. SaySusie, the moderator, will probably jump in with all sorts of wonderful information. She's so great with the research!

Many here have been on prednisone, and can give you advice and comments on that.

Many hugs, dear, and know that you are not alone!

11-07-2005, 06:51 PM
Thanks Hatlady!

I have been reading lots of stuff and some has sunk in and others I am still wondering about. I know you must reduce your stress and give into your fatique you read that everywhere.

Any other suggestions to calm a flare or keep one from happening?

Is a flare the same as active lupus?

How do you get people to believe that you are sick even though you "look" fine?

I am just full of questions right now everyday I come up with new ones hopefully between here and my doctor I can get well educated and in turn educate my family and friends.


11-08-2005, 04:39 PM
don't feel bad, we all have more questions than answers - it never ends!

to try and explain to those who aren'tunderstanding -- go to www.butyoudontlooksick.com and click on the Spoon Theory. It is the best way I've found to explain it - such a frustration!

A flare is when your lupus gets worse - a day with high pain, possibly a fever, would be a mild flare. A day with kidney problems or other organ involvement - major flare.

All I can suggest is stay out of the sun, TRY to reduce stress and get enough rest. Eat well - stay away from saturated fats (red meats, cheese, cream, etc) and share with us here - we're all in this together!

Hugs dear!

11-10-2005, 05:56 AM
Hi Kellierae, I, too have Hughes Syndrome/Lupus Anticoagulant. I am told I will be on coumadin for life. My rheumy explained to me that, usually if you have any "events" such as TIA's, blood clot events, etc. ( I had a TIA) generally that want to treat you more aggressively. If they don't, naturally there's chance of more of the same. It doesn't 'go away' to my knowledge, so to treat for only 6 months doesn't really make sense to me. I have to have monthly visits w/ my rheumy since I'm on coumadin. (So they can monitor your numbers). I'm guessing everyone struggles w/ the same about having to suddenly start taking new medicines. I really resisted at first, but then it just becomes your new normal. I'm glad to hear it helps your headaches, though. I, too get fairly frequent headaches, and they are just horrible. It just stops your day cold in its tracks. I'm 43 and have 2 kids 14, and 9. Having to act normal while your head is ready to explode really is exhausting. Just wanted to say Welcome and hang in there!


11-10-2005, 09:42 AM
Thanks Mitch it is good to hear from someone else that has it! Before this I never heard of it nor has any one I know, Hughes syndrome that is. I think I will go with the life long theory because of the way it was presented to me. I also had TIA's so I want to be careful. I was told if I go off the coumadin and I stoke out my left side then what am I gonna do? It will be too late. So who can argue with that I am much too young and so are my children for me to be stroking out any sides of myself! My kids are almost 17, 14 & 9 so they are going to need all of me for a long time.

Do you also take prednisone? I am on 20mg a day and am wondering when does the moon face appear and when will the weight gain start? I am dreading both I have been on it for about 3 weeks now. I know it is helping with my headaches but I really dread the side affects. It is what I have to do for now because being bigger is better than the alternative that I was faced with this spring! I do not want anymore seizures, heart stopping, or TIA's so for now I choose the meds.

Take care!

11-10-2005, 09:09 PM

I have had almost exactly the same symptoms you described. I started having mini seizures in April and my whole left side would start to tingle especially in my face. The whole side would kind of spasm and sometimes the seizures were bad enough that if I happened to be walking, I would almost fall down. My rheumatologist did a ton of tests including an MRI, EEG, Cat scan, lumbar puncture and numerous blood tests. She said I also have the clotting problems and the final diagnosis is lupus of the brain (cerebritis). I've been on Cytoxan IV therapy since July and have improved dramatically. After the Cytoxan, she wants to put me on Cellcept. The cytoxan is no fun (nausea, fatigue) but I didn't realize how sick I was until I started feeling better. I had severe headaches until my neurologist upped my seizure meds (Gabitril). I have very few headaches now although I still seem to have that brain fog where it's hard to concentrate. The lumbar puncture was the most painful test ever but she wanted to rule out MS. Good luck and let me know how things are going. I'm 46 so just a bit older than you.,

11-11-2005, 01:15 PM
Hi Kellierae, To answer your ?, No, I am not on Prednisone. So far, just the coumadin, aspirin, and Plaquinil. I found a lot of relief from my joint pain with the Plaquinil (thank goodness), so I guess unless that stops working, my rheumy didn't feel it was necessary to start anything else. It is unfortunate that such a great drug (pred.) has to have this type of side effect, but that's the least thing to worry about, in my opinion. Your health first! I thought it ironic that I had just finished close to a year with Weight Watchers, lost 30 lbs. then was dx'd w/ lupus. A few months later, I had the TIA and immediately stopped smoking, and, you guessed it, I gained 1/2 the weight back. Oh well....I guess it could've been worse. I have a friend who gained almost 100! And I had 1 whole summer to be thin! (Can you detect the sarcasm?) Just kidding, of course, I'm with you, we need to be healthy for our families as well. I thought life was supposed to 'begin' at 40????

Take care for now!