My brain shrank

Hi Everyone. It's been so long since I've posted that many of you don't know me. I've been very sick for quite a while with extreme fatigue, pain, and cognitive dysfunction. I've been taking Benlysta and gamma gobulin infusions for about six months. They are finally beginning to help, but I still can't think clearly. My cognitive issues are so bad that my internist and rheumy insisted I see a neurologist. Neurologist ordered MRI and EEG and yesterday told me the results. As a result of my coma my brain shrank in the frontal lobe. He said if placed on a scale of 1 to 10, mine shrank about a 3. If I have time to write later today I'll explain my symptoms, which are way beyond lupus fog, and ask for all kinds of sympathy and advice. I hope all of you are doing as well as can be expected and I'm sending lots of happiness your way! Love, Butterflake

How unusual. I've never heard of brain shrinking.

Hi Barbara. It's so good to hear from you. For years I thought you were the most ill of all of us, but I think you're right and I've finally caught up with you. I appreciate the prayers, sympathy, and especially love.

Noseyparker I'm aware of shrinking lung syndrome, but it has nothing to do with my shrinking brain. Because of lupus I've had pneumonia several times. In 2011 I had such a severe case of pneumonia that I was in a coma for two months and came as close to death as anyone can be without dying. I was told by family that one physician said he had never seen anyone survive with a PaCO2 as high as mine. I have a BS in medical technology and my long term memory is still good so to explain, I had pneumonia that caused alveolar damage in my lungs and it would not allow CO2 to escape. As the CO2 in my body increased and I got closer to death the blood in my brain was routed from my frontal lobe to more important parts. Without blood, my frontal lobe withered (shrank).

The interesting thing to me is that during my recovery I noticed almost immediately that my short term memory was bad, but it's gotten worse over time. The lupus fog is absolutely terrible. For a couple of years my daughter has noticed a pattern in my speech where there are frequent short pauses in a sentence as I try to search for words. Also I often forget what I was saying. I remember lupus fog before the coma and all I can say is some of the problems I have now is lupus fog, but much, much worse. Also driving requires all my concentration and even then have problems so my hubby and neuro want me to have a driving evaluation and the Shepherd Spine Institute followed with driving lessons given there for patients with neurological problems. Oh well, that's enough for now. Thanks for listening. Love, Butterflake

Hey Donna:

Yep, I'd say you've caught up with me. I don't like thinking I'm one of the "sickest" on the forum it's hard to accept at times. I know how you're feeling right now, it's like so overwhelming. (((hugs))) I'm sorry that you went through all of this and now are having such a difficult time with your memory.

I have noticed that mine is getting much worse, and yet my family is refusing to accept it may be my lupus. They like to blame my pain medications. Even though, I do take my long acting medication every 8 hours like I should. However, my short acting stuff which I can have every 4 hours, I some days I really stretch out the time. If I'm going to have to drive my car I NEVER take my short acting pain medication until I'm home for the day.

My family has really made me feel bad about taking something on a daily basis for pain. I've been called an addict by my spouse and I guess my daughter really has issues with it, not that she's told me this. Of course, hubby's sister is a Doctor and she doesn't believe in pain management, so she's bugging him all the time about it. She's so against it, she elected not to get her DEA license and doesn't prescribe pain medications to any patients that come to see her.

I think though that my brain is starting to slow down, I've notice over like the past 3 three, maybe more I'm having a lot of dizzy spells, and I've noticed that my balance and ability to walk is off. I seem to stumble more into walls and such, of course, I hear "how much pain medication did you take" and I may not have taken anything. Again, I've suggested it's my lupus and he blows it off.

I also notice that my feet feel numb and my right arm is very weak, are you having any of these types of symptoms? I do know that my CO2 level is ALWAYS elevated now, ever since I had my near death experience. Yet, no Doctor seems worried that it's high, is yours still elevated? Sorry to bomb you with questions, but I've never talked with someone who had elevated CO2 levels.

Sweetie try not to get to upset about the driving, I understand it's a loss of your independence. However, you don't want to have an accident and kill yourself, or anyone else. I know you and you'd never forgive yourself if you hurt someone else.

You take care and come and post when you can. I'm gonna go to bed this being up at almost 2 am is getting really old I guess. I'll keep checking for updates and you hang in there, I'm pulling for you and you know I'm always here if you need to call me.

Hugs,
Barbara

Donna, it makes me sad to hear that your health issues have worsened. It's hard for healthy people to relate to our cognitive dysfunctions. Mine has to do with a stroke and small vessel disease.

My mom's frontal lobe had shrunken but rather than cognitive dysfunction, she could no longer control her legs and was in a wheelchair for the last few years of her life. I fall a lot but don't know if it's related to my brain issues or if I'm just a klutz.

I don't come here as much as I used to & it's great to connect with old friends like you and the few that are still here. It sounds like you're keeping your spirits up. Check in more often.

Pat

New member intro moved to its own thread.

www.healingwell.com/community/default.aspx?f=29&m=3179160&g=3179160#m3179160

Post Edited By Moderator (Lynnwood) : 9/9/2014 6:18:41 AM (GMT-6)