My brain shrank

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Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 8/8/2014 7:00 AM (GMT -6)   
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
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

noseyparker500
New Member


Date Joined Aug 2014
Total Posts : 5
   Posted 8/8/2014 2:40 PM (GMT -6)   
Sorry to hear of your medical calamity.

I came across a website about shrunken lung syndrome (SLS) just last week.

If the lungs shrink then less oxygenated air is accommodated so it might lead to a shrunken brain. Ask you GP about it.

Best wishes

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/8/2014 7:48 PM (GMT -6)   
How unusual. I've never heard of brain shrinking.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/8/2014 9:09 PM (GMT -6)   
Donna:

(((gentle hugs))) sweetie I"m so sorry to hear this. I know that you must be beyond frustrated with this new issue. It seems like it never stops does it?

I'm going to keep you in my prayers and add you to my ladies prayer list. Sounds like you could use all the prayers that we can pray for.

I just wanted you to know that I'm here and I'm pulling for you. You and I seem to never get a break, do we? It's one thing after another, I'm like you been very sick all summer long and still feeling like a pile of doggie poo.

Please try to take care and REST. Your body needs it and you need the rest too for your mind and soul. If you feel up to posting to to explain the symptoms that you're having, I'll be very interested in seeing what has happened with your brain.

You take care and much love and sympathy coming you way.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 8/9/2014 10:17 AM (GMT -6)   
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
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/9/2014 4:06 PM (GMT -6)   
Hi Donna, I'm sorry to hear :( I don't even know what to say.

Sending a gentle hug and prayers your way (((hugs))))
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

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/9/2014 11:50 PM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/12/2014 7:47 PM (GMT -6)   
Donna,

Sorry that you find yourself in this position but glad that you have discovered the reason things are not getting any better. (At least I imagine that a shrinking brain cannot be re-inflated.)

I know what it's like to have much more cognitive difficulty than the average "lupus fog" and the frustration that comes from people saying it's normal (or at least normal for lupus). I was so relieved when my neuropsych testing showed tangible changes in my thinking processes & reactions. Not that I liked the results (sort version - "you've lost 15-20 IQ points"), but at least something was true and measurable and not my imagination.

I too was unable to drive or complete a sentence or carry on a conversation or even follow a stupid 20-minute sitcom. Thankfully when my Lupus went "quiet" my cognition started to improve and I feel like I'm at least 90% of what I was (my guess was about 65-70% normal at one point.) I guess I could try to get some tests done to measure recovery but I'm not really sure what the point would be.

The cool thing about the brain is that we can create new circuits and essentially re-wire ourselves. I hope that the Shepard Center can help with brain exercises and techniques to overcome some of these issues.

Glad to see you posting again!!
Hugs.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 8/20/2014 7:55 AM (GMT -6)   
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

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 8/29/2014 12:00 PM (GMT -6)   
I'm sorry it's taken so long to reply. I went through a depression storm, for lack of a better term, but thanks to my shrink the suicidal thoughts have stopped.

Barbara, it's really terrible that your family questions your pain medication. My daughter questions why I go to the doctor "for every hiccup." We have been arguing lots lately anyway and she will not go to the doc for anything. I'm going to make a new post in a minute and you'll know why she can't say I'm getting treatment for a hiccup.
As for my CO level, no one has mentioned it being elevated since my coma. My lungs recovered well with the exception of being susceptible to pneumonia.

For my balance (falls) and gait problems docs want me to take physical therapy. I was beginning to feel a bit better after six months of benlysta so I went to one session, but became sick and it will be at least a couple of weeks for me to go back. I have arthritis in both hips and one knee so the therapist wants to work very slowly strengthening those areas.

Pat, it's great to hear from you too. I'm very surprised any of the old friends are still here. I'm so sorry to hear of your stroke. It must have been/is awful. Like Lynnwood says, our brains can rewire to get some normalcy back in our lives. I hope we live long enough to see the effects of our rewired circuitry.

My love to all of you with lots of warm hugs. Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

ljardo
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/8/2014 9:18 PM (GMT -6)   
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)

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