Well my dr neuro said I did not have a stroke the incident I had a work was lupus related. Has anyone had those kind of symptoms? My last post about thinking I had a stroke because I got disoriented and confused and started to feel confused and numb with a bad headache. But my dr said all my test were ok that it was just lupus related. I have brain lesions on my right side but its from the migraines I’ve had migraines since I was 16 yrs old. Today is not a good day I’m in so much pain from the fibro and the lupus is really giving me a hard time today…I’m at work because I’ve missed so much my boss told me maybe I should consider dusability. All I want to do right now is crawl in my bed and cry. I don’t want to sound like a cry baby but its just not a good day. Frustrated!
Hello Becca, thank goodness it wasn’t a stroke! And go ahead and sound however you want. My daughter has experienced something similar to what you described She had manic and depressive behavior with disorientation. She lost her bladder too. This all happened during a flare. Rheumatologist is concerned about mini seizures. I’ve learned the Lupus can cause the strangest symptoms and out of nowhere. I hope you feel better soon and your spirits pick up.
Dear Becca,
My heart goes out to you, because I had a similar thing happen 20 years ago. Looking back I wondered if it might have been related to lupus..but I will never know.
I had an excellent doctor, though another doctor said it was not a stroke, he called it a TIA and assured me it would take a year to get over it. I quit teaching for a year because I couldn't keep my mind focused. Reading was extremely difficult and comprehending was even harder. The piano filled with dust and I gave up my piano students.
In August my former principal called and asked me to teach. Thankfully I was able to do so.
I am just sharing this with you to say doctors have varying opinions and the one who recognized something had happened, was the one who offered the most help. It is very difficult when you know something happened that wasn't "normal." My doctor kept assuring me that it would get better thus he led me in a positive direction. No it did not happen overnight. It took time to get better. And yes, I had many "strange symptoms" though I was too busy to get sick. My understanding of your heart and prayers are with you. I trust you will have wisdom and direction and if you need to work, you will have an understanding boss. Take one day at a time...and don't add extra things on your plate to add more stress. Taking care of yourself is a necessity ...not a luxury.
Prayers go out to you. I have lupus and experienced the same thing in 2003. The Neurologist’s final diagnosis was “complicated migraine” from taking black cohosh for hot flashes. Now I just deal with the hot flashes.
Feel better soon!
2 times in my life I experienced what I thought was a stroke but ended up being nothing. Actually after attempting to call 911 the second time I was told it was a panic attack. I was home alone with my now 2yr old son. I could feel the left side of my face going numb. When my mouth started to feel like it was drooping I grabbed my phone and called 911. By the time the operator answered everything I tried to say was backwards and I could not say my address. I could however say very clearly that I was here with my baby alone, I just kept saying please help my baby. They had to use GPS signal to find me because I was on a cell phone and I could only say the first 2 numbers of my address but I could not say the street name at all. My sister passed away when she was 13 and I was 16. She had an infection from something totally different. She also had cancer. My sister had a stroke and that essentially is what killed her. To have gone through what she did but to be able to come out of it with no lasting effects was very traumatic for me. Now I get horrible feelings in my head that I can not explain. Feels like it's going to happen again and after it's over I get a headache.
You should never feel like you are being a cry baby for expressing your feelings. Your human and we are not built to have no emotions. I hope everything works out for you.
I also have had many neuro symptoms with my lupus........I have always had migraines, but about 6 years ago I had a weird episode hit me after having bad sharp pains in my left temple...well I ended up in the hospital with transient global amnesia, I thought I was having a stroke or TIA too,,,,but it was an amnesia attack !
The Dr. said it was all a result of my migraine syndrome .....at that time my lupus had not been diagnosed yet.......after a few months of testing I was diagnosed with lupus and the Dr. said that the migraine /amnesia episode was probably one of my flares !
I still have migraine issues with trigeminal neuralgia on the left side of my face when I have my headache......I have found that rubbing Aspercreme on my temple and left face area helps relieve the pain tremendously !
My prayers go out to everyone who is suffering along with me from this mystery disease called LUPUS !
I am very glad it was not a stroke!!! No need to apologize. We all have days that we want to curl up in a ball and cry. I am just sorry you are having one of those days. Vent anytime you need to its healthier than keeping it all bottled up and this is probably the safest place for you to do it. No judgements here. I hope tomorrow is a better day!! Try to get some rest. Take care!!
Becca,
Believe me we all have days we want to crawl into bed and cry, so don't at all feel as if it is something to be ashamed of. If you are considering disability, start working with your doctor's on it now, as it can take months for an answer and most people are turned down the first time. It may be better to start working with an advocate now.
As to the stroke...Yeah! I had 2 TIA's and a stroke last year. I was 44. I had my carotid artery cleaned (cannot even begin to pronounce the procedure) however, I have the same amount of plaque build-up in the subclavean artery. Would not be a big deal if there were no symptoms. I just saw my nuero today and asked him about it...there is a condition where the blood flows out of your heart but because of blockage in the subclavean artery it doesn't get to the entire brain. Most Cardiologists or nuerosurgeons rarely look at that and then not as a potential problem. I have great cholesteral, never a problem but the buildup is because of narrowing of the arteries due to the lupus. I would consider keeping a sharp eye on your bp and track it. Pain can make it rise or if we are not in pain it can make it dive which can cause confusion and possibility of passing out.
Don't feel like you can't come here and cry...that's what we are here for.
XOXO,
DeAnne
I too, have had the “Is this a stoke or something else”. Because I have a history of migrain,stroke,Tias,cerebritis and vasculitis…I am a firm believer of never take a chance if you are not sute. Specially where headaches are concerned. My chrinic headaches which are daily feel the same every dsy. My guage is when theres a significant difference & involving cognitive issues. I go to ER. I hv discovered most ER Drs want to rule out stroke or ceribritis/vasculitis. Im my own advocate. Some months Im @ the ER 2 to 4x.
Mugs,
You are absolutely correct...as I was told in the ER when I had my TIA the difference between it and a stroke is length of time and damage to the brain. That said, it is important to get it treated immediately.
As for getting an advocate, I meant that she may need someone to help her fill out ALL of the paperwork and documentation for SSDI.
Becca, you take care of yourself, first...I am 45 and lost a good portion of my peripheral vision as well as muscle control because I didn't want to be a bother...Be a bother, it's necessary.
DeAnne
Hi Becca,
So sorry to hear about the pain you are having, but thank God you did not have a stroke. You know it would be great if "OUR BOSSES" would get some training on being more sensitive. You hang in there. Be Blessed!!!!! I'll keep you in my prayers.
I had a similar incident happen to me at work while teaching my 5th graders. I felt light headed with headache, was disoriented, could not talk and had this stare like I was out of it. I could not answer any question, though I could hear people talking to me. My para was there thank God and she saw everything and told me what happened after ambulance took me to the hospital. They ran all kinds of test but found nothing wrong. This was before my Lupus diagnosis. This incident prompted my PCP to dig deeper. I have had this happen again with migraine headaches and I actually fainted at home and my daughter was home found me on the floor and could not wake me. she was just calling 911 as I woke up. I remember nothing and I refused to go to the ER, because the first time I went I left the same with no answers.
Take care of yourself Recca, thanks for sharing.
prtyblueyz & Becca,
Although I know and had the diagnosis of the TIA's however because our arteries can narrow and build with plaque we are more susceptible the TIA's and strokes. My nuero and rhuemy are husband and wife, so because I see them so often, I ask a million questions when I go. I was told that unlike a hemmorage type stroke, 97% are of the type where the plaque breaks off and makes it's way to the brain, temporarily stopping O2. However, the first thing that they do is give you an aspirin which is very effective. This would be the most common type of TIA or stroke...and even with good labs, you must take it very seriously.
You must have been terrified. I am so glad you were okay.
I really just want people to know that we ARE susceptible even when everything else may show a negative.
I would definitely go to the subgroup that jujubee mentioned. I obviously, have nuero issues and it is great to be part of a group where that is the primary subject.
XOXO,
DeAnne
prtyblueyz said:
2 times in my life I experienced what I thought was a stroke but ended up being nothing. Actually after attempting to call 911 the second time I was told it was a panic attack. I was home alone with my now 2yr old son. I could feel the left side of my face going numb. When my mouth started to feel like it was drooping I grabbed my phone and called 911. By the time the operator answered everything I tried to say was backwards and I could not say my address. I could however say very clearly that I was here with my baby alone, I just kept saying please help my baby. They had to use GPS signal to find me because I was on a cell phone and I could only say the first 2 numbers of my address but I could not say the street name at all. My sister passed away when she was 13 and I was 16. She had an infection from something totally different. She also had cancer. My sister had a stroke and that essentially is what killed her. To have gone through what she did but to be able to come out of it with no lasting effects was very traumatic for me. Now I get horrible feelings in my head that I can not explain. Feels like it's going to happen again and after it's over I get a headache.
You should never feel like you are being a cry baby for expressing your feelings. Your human and we are not built to have no emotions. I hope everything works out for you.
Good it wasn't a stroke! Crawl in bed and cry anytime you want to...sometimes that is relief enough to get you through when all else fails. Not a thing wrong with crying...and sometimes it actually oes help. Don't know if this has anything to do with it or not...but I have had THE WORST 6 weeks with my Lupus I have had yet. My rheumatologist told me Lupus is often much worse in the winter. Go figure...I'd have thought it would be summer due to the increased uv rays. Disability is definitely not as good as working...benefit and income wise...then again...neither is being fired because you miss too much work. I'd be checking out ALL my options. Good luck to you.