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Sandra
08-01-2009, 10:48 PM
Hi, I knew I was dealing with "something" horrible for a long time, years in fact. I had seen so many physicians to try figure it all out. I was treated by so many on a symptoms only basis. It has been a battle but have pretty much figured out the what and why now. I have several AI issues and the most recent diagnosis is Lupus. I'm real new to the title but not the symptoms. I thought it would be much easier after a diagnosis but am discouraged that so far it has not been the case. The symptoms i have I just need to understand and know about. I need to know if they are something to be reported to a doctor or just understood, tolerated and lived with. Sometimes I think I am just not doing a good enough job of articulating or conveying the importance that I learn about what I am dealing with.
There are a particular set of issues that I really struggle with. They involve my brain. When these symptoms flare I don't sleep, my neck aches, I get terrible migranes and then there are the mental/cognative problems. I can't think anymore. I can't remember. I feel like my head is swimming to the point I get nauseated. I have bad dreams. I have tiny little anxiety attacks about nothing from no where where i feel panicky for no apparent reason. Sometimes I feel tearful and I am unsure if it is part of the cognative problem or just being worn down and exhausted. I pray everyday for clarity of mind.
I would sure like to hear from anyone dealing with brain issues. thanks Sandra

rob
08-02-2009, 01:26 AM
Hi Sandra,

I have been dealing with some serious CNS issues for a few years now. I have SLE, and MS. The things you mention, the things that are affecting you, are affecting me too. I have the same symptoms, the same anxious feelings and blank spots you are having.

I was what many called a "walking encyclopedia" of whatever. I knew so much, I could retain so much. I was the kid who always was in the spelling bee, the guy you had proofread your papers in college. I can no longer remember how to spell simple words, I get lost in conversations. I had a clarity, a drive, a passion for so many things. Indeed, my success, my identity, my life was built on what I used to be able to do mentally.

Cognitive dysfunction plagues me. The unsure feelings, the tearful thoughts, are something we share. I don't know what the answer is for us. There are no easy solutions. But, we both recognize what's happening, and we are both here talking about it. Despite your fog, your percieved inability to articulate yourself, you have spoken words that are comfortingly familiar, and I understand clearly what you are saying. That's a good thing. At least we are not alone. That's a good thing too. Little victories can be huge sometimes.

Rob

Angel Oliver
08-02-2009, 05:51 AM
I hear you.What you described is me.You are not alone.I used to be a receptionist.I swear i remembered to the telephone numbers of most of my company directory.I was well known for it and people would just ask for a number to test me.Today i woke thinking it was Monday...sat and i was blank.It was only when i asked what day it was i realised. I cry when anyone says...''how are you today'' or just for no reason. I too have the neck pain,n other pain.I am glad you found us as you will learn from others and gather advice to help you and make new friends who will so understand you.
Today, do something nice no matter how small,just for you. Sit and know we all understand.

You take care
love Amanda.xxxxx

stephlovespeter_xo
08-02-2009, 09:56 AM
Dear Sandra,

Like you, although I am new to this possible diagnosis for myself - I am certainly not new to the symptoms. I am in the 'limbo' stage right now, I have all of the symptoms, just no diagnosis yet.

I can share in your pain. I have a lot of cognitive issues too - you're not alone. I have memory problems, forgot my last name once! I also suffer from an anxiety disorder and was diagnosed with Bipolar (although i think they're now thinking it's more Lupus rather then the Bipolar disorder). It is so hard, on a daily basis.. and it gets so frustrating. I know what helps me, is fresh air and family. I would probably have gone insane if it wasn't for the fresh air. I take a book, or my ipod and fall asleep outside in my backyard. Some days, you can't escape the pain but you can't certainly escape the reality for a bit. I hope you get all of the answers you are searching for. It's a long and hard battle, but at the end of the day.. we're stronger for it.

steph

jcg196
08-02-2009, 04:59 PM
Hi Sandra,

You are not alone. U have described a lot of what I go thru as well. I think a lot of mine is thru cortisol surges and my adernal glands are shot. I can't sleep during the night and I feel like I am "chasing the tiger" My heart beats fast, i feel sick to my stomach. I can also cry and get emotional for no reason...depression... I can also have OCD which is a pain.

My neck also gives me problems and migraines have u seen a Chriopractor (sorry for spelling)? Mine was able to relieve a lot of the stress out of my neck and reduce some of my migraines.

Also if u feel u are not conveying the right thing to ur doctor u can keep a journal when things are happening to u. Try to write down the time and if u are in pain how much and where.

I hope u get to a doctor real soon
Take care and feel better soon!

xoxox neL

mountaindreamer
08-02-2009, 05:02 PM
hi sandra,

yes, many of us deal with cognitive issues....my get worse when i am in a flare. As part of my professional obligations, i train employees on safety rules and regulations. Sometimes, i have to get the on-site manager to help me say the words....i just can't think of even the easiest word.

I have realized that i have to keep a notepad and pen close by, because when i do think of something, i have to write it down, or it is lost forever.

It is very important for you to not beat yourself up over these symptoms.....just join us in some of our "just for fun" threads where we discuss the many blunders that we make every day....we enjoy a few laughs and it eases some of the seriousness of this problem.

KATROACH1972
08-02-2009, 06:09 PM
I sympathize with you Sandra! I just got over a 7 month attack on my CNS with the brain fog,hallucinations,numbness,tingling, headaches,memory loss,no decision making skills, or any other things that involved using my brain! It was horrible! I ended up with two brain lesions, and they said Lupus didnt do that! well it did to me! I have been on Cellcept 2000mgs now for last two months and it has stopped the CNS attack for right now. I hope you get relieve soon my friend! Hugs Kathy:cute:

Sandra
08-02-2009, 06:46 PM
Wow, so hope everyone is doing ok with this miserable symptom/issue. Emotionally I mean. It is particularly cruel. For me it is the cruelest when others who are not apprised of lupus let alone it's manifestations regarding CNS. I get hurt when people won't wait for me to finish the sentence while I browse the corners of my mind for first the right word and then...what ever word might possibly fit. Funny how words just don't possibly fit isn't it.
I find people looking around at each other or the floor etc,( what is she talking about???) by that time my hope for clarity is gone poof!..... somebody fills in the pregnant pause with a kind of how's the weather comment....their discomfort kind of makes me giggle inside....thank goodness or I might be offended.....it feels like i'm on some kind of weird spelling game show....welcome to "spit out that thought"....big timer ready to buzz before I can get it out....LOL! Sometimes I win sometimes I lose. Guess it's better to laugh sometimes as you say.
I do hope you all have not lost too much though. An engineer to lose thought and memory isn't so funny, nor a 7 month stint of ending in lesions. Don't want to scare anyone but knowledge sets me/us free. So when does one know it's time to have a serious talk with their rheumy? Or does somebody just find you making no sense or what ever and you end up in hospital? Does it come on real fast? I'd kind of like to know how the most serious senario's advance to be ready and to educate my dear hubby so it doesn't scare him to death. How horrible to find your best girl in some kind of psycotic state. Sandra

debbie-b
08-03-2009, 05:23 AM
Wow, so hope everyone is doing ok with this miserable symptom/issue. Emotionally I mean. It is particularly cruel. For me it is the cruelest when others who are not apprised of lupus let alone it's manifestations regarding CNS. I get hurt when people won't wait for me to finish the sentence while I browse the corners of my mind for first the right word and then...what ever word might possibly fit. Funny how words just don't possibly fit isn't it.
I find people looking around at each other or the floor etc,( what is she talking about???) by that time my hope for clarity is gone poof!..... somebody fills in the pregnant pause with a kind of how's the weather comment....their discomfort kind of makes me giggle inside....thank goodness or I might be offended.....it feels like i'm on some kind of weird spelling game show....welcome to "spit out that thought"....big timer ready to buzz before I can get it out....LOL! Sometimes I win sometimes I lose. Guess it's better to laugh sometimes as you say.
I do hope you all have not lost too much though. An engineer to lose thought and memory isn't so funny, nor a 7 month stint of ending in lesions. Don't want to scare anyone but knowledge sets me/us free. So when does one know it's time to have a serious talk with their rheumy? Or does somebody just find you making no sense or what ever and you end up in hospital? Does it come on real fast? I'd kind of like to know how the most serious senario's advance to be ready and to educate my dear hubby so it doesn't scare him to death. How horrible to find your best girl in some kind of psycotic state. Sandra

LOL, my husband is the only one, who has the patience, to wait until I spit out what I am trying to say. If I can't, i'll say, " help me" and he will try and finish my sentence. I have got to be honest, I don't think, I could be as patient as he is, because lately my patience is very short. I said in another post, that when I am fogging really bad, I get alot of anxiety, when talking to non family, because I am afraid they may think that I am stupid. At times I can not get anything out of my mouth, that makes any sense. It is very frustrating and embarrassing, I always joke around when it happens, even though it hurts.

Debbie

leaann
08-03-2009, 08:13 AM
Sorry to hear that everyone has this issue... mine has only started lately... and I thought that it was just me... I will be doing something like washing clothes and will stop and think what was I just doing and it takes me a moment and then I will remember what I was doing...

Now it is getting worse and I am the one in the family that pays all the bills and takes care of our finances... I am starting to notice that I am forgeting things like the water bill...I almost forgot to pay it... at the last moment I remember that it needed paying just before they were going to cut it off...

I have always had a problem talking or thinking, I worked for a call center for years and we were graded on our calls everyday...I was once ask why do I interrupt people so much, my answer was if I don't interrupt I will forget what I am going to say and will sit there looking like an idoit and then have to ask them to repeat it again... My hubby always said that it was a habit and that i could break it, if I wanted to... I tried to explain it to him and he said that it sounded like an excues... :hissyfit: that would make me mad...

I just wonder if all thoses years I had been doing that was it because of this... makes me think :hmmm:

I have had all the test mri, cat scans, ect all were fine... guess it's just one of those things...

take care

lucky7
08-03-2009, 01:57 PM
HUH? Did someone say Cognitive Issues? Whats that? HMMMMM, i cant seem to remember what we were all talking about. :wacko: YUP, i experience this issue QUITE OFTEN, so sorry you have to experience it too. BUT WE are here for you "Foggy" or not!:yes: WE DO UNDERSTAND!!! Thats whats nice, along with so many other things,about this group!!!

pandagirl
08-11-2009, 05:37 PM
I used to be able to multi-task big time...while in a flare I am lucky I can do one thing at a time...today I went to make a call to a number I use for work frequently...gone...! Could not remember it for the life of me. I am sure it will come to me at 3:00 am...lol I find it really scary because my mom who passed recently had 'moderate' Alzheimer's. I am frightened of the possibility it is me too, but now that I have heard of so many others on this site,,,I am not alone ,,,nor do I have early Alzheimer's!!:wacko:

lucky7
08-12-2009, 01:10 PM
AWWWWW, SO SORRY about your mom Andrea. Sending you gentle hugs XXXXXXX