Im gonna do some research on that , thanks! Because that makes a lot of sense for the way I was acting ! I have another question for u if u don't mind beings u have had lupus for so long! Do u have veins in ur arms an hands that swell up. the veins on my right hand on the top swell and stick out a lot farther than usual. also on my right forearm to the right outside of it I have one section of one vein that stays swollen a lot. Have u ever heard of anything like that before. Do u think the few incidents that I had where the right half of the room went up and the left side went down. Its like the room split. I cant explain it that good, I hope u kind of understand what im talking about (: Do u think that was caused by the same thing the other incident was caused from, when I couldn't control how an were I was walking? Sorry for so many questions. Thank u for ur time!
Joeysluv said:
Hi Monique,
A TIA is a 'trans ischemic attack' - a brief interruption of blood flow to a part of your brain. That's not to say you had that. But the advice is to seek MD counsel especially if you have it on an on-going basis..
It could be many things, the past couple of years I've had occas. vertigo attacks- one was so bad, they took me to the ER. It just happened out of the blue, everything went spinning around me and I fell to the floor and couldn't get myself up. The docs couldn't find any reason for it, but pumped me with IV fluids to rule out hypotension. The symptom lasted a couple of days then it was gone. I have felt minor versions of this at occasions, but never that bad as the first one. I also have a history of seizures- brought on by the lupus, so the docs were afraid I had a stroke also and wanted to rule out, but that was ok.
I wish you good luck. I've been fighting lupus for 30+ years and never ceases to amaze me what new symptoms will crop up. I am currently going through Rituxan therapy for severe thrombocytopenia. Not fun. I find comfort in knowing I'm not alone in this fight and I'm not going crazy.
moniquecrader said:
Hi Keepkeepinon, Im not sure what a TIA is? Would you mind explaining it to me. I have another appointment with a new rheumy next week. should I just wait till then or is this something I might need checked out asap?
Keepkeepinon said:
You might have had a TIA. You should see your doctor to find out. Tell him about these symptoms. I hope you get an answer quickly. I know we have some seemingly unexplainable things happen to us, but it's always better to be safe than sorry, especially with the symptoms you've described.
Thanks ms P! Yea that is a possibility I suppose. But u mentioned that ur muscles get sore an they tremble down to ur bones. That is exactly how mine have been feeling, but I couldn't find the right words to describe what I was feeling . So thanks again, now I will be able to better describe the feeling to my rheumy next week!
Ms. P said:
The only thing that I can think of is the Sun exposure. I know that I have to cover myself up from head to toe in order to go out side when the sun is high. I get Sun sickness, I get weak, dizzy and have a hard time standing up and must go inside asap and lay down for a while. The sun may be a trigger for you and it also makes my muscles sore and they trimble sometimes down to my bones. I have to take a pain med and drink lots of water and just quiet down myself by myself. Talk to your Dr. ask to be tested for what could be some of your triggers.
Ur not the only person that has mentioned it couod be that. I wish I would have seen these messages sooner, I would have went on to the hospital. guess im gonna wait til my appointment now on Monday. This has scared me so bad. Also I haven't started a treatment plan yet, hope Monday ill be able to get put on one! Thanks for ur time whathappensinvegas! And im defiantly gonna push for an MRI weather he/she wants to do it or not! I need to ease my mind about it.
whathappensinvegas said:
Moniquecrader,
Where you having a headache? Doesn't really matter... I would without a doubt, go to the ER and demand and MRI. I have had Lupus for years (according to the docs) but was just recently diagnosed. The only time I did any thing like that was after a Superbowl party...that part of which I will really miss this year. The only time I had symptoms like that was when I was having a TIA. Not that that is what it is, but there is vascular (stuff) that goes along with Lupus. Having MRI and CT myself Fri.
Hopefully when you see your doc on Mon he/she will order a cardio-vascular workup along with a neuro w/u. swelling of the veins on one side may indicate some sort of blockage back to the heart. Is your arm swollen also (not just the veins)? Is it red or swollen? You may also be a phlebitis of some sort- common in lupus patients. Please write all your symptoms down and show them to the doc. Sometimes when we are at the docs we tend to forget to mention some symptoms which may be important in the diagnosis.
moniquecrader said:
Im gonna do some research on that , thanks! Because that makes a lot of sense for the way I was acting ! I have another question for u if u don't mind beings u have had lupus for so long! Do u have veins in ur arms an hands that swell up. the veins on my right hand on the top swell and stick out a lot farther than usual. also on my right forearm to the right outside of it I have one section of one vein that stays swollen a lot. Have u ever heard of anything like that before. Do u think the few incidents that I had where the right half of the room went up and the left side went down. Its like the room split. I cant explain it that good, I hope u kind of understand what im talking about (: Do u think that was caused by the same thing the other incident was caused from, when I couldn't control how an were I was walking? Sorry for so many questions. Thank u for ur time!
Joeysluv said:
Hi Monique,
A TIA is a 'trans ischemic attack' - a brief interruption of blood flow to a part of your brain. That's not to say you had that. But the advice is to seek MD counsel especially if you have it on an on-going basis..
It could be many things, the past couple of years I've had occas. vertigo attacks- one was so bad, they took me to the ER. It just happened out of the blue, everything went spinning around me and I fell to the floor and couldn't get myself up. The docs couldn't find any reason for it, but pumped me with IV fluids to rule out hypotension. The symptom lasted a couple of days then it was gone. I have felt minor versions of this at occasions, but never that bad as the first one. I also have a history of seizures- brought on by the lupus, so the docs were afraid I had a stroke also and wanted to rule out, but that was ok.
I wish you good luck. I've been fighting lupus for 30+ years and never ceases to amaze me what new symptoms will crop up. I am currently going through Rituxan therapy for severe thrombocytopenia. Not fun. I find comfort in knowing I'm not alone in this fight and I'm not going crazy.
moniquecrader said:
Hi Keepkeepinon, Im not sure what a TIA is? Would you mind explaining it to me. I have another appointment with a new rheumy next week. should I just wait till then or is this something I might need checked out asap?
Keepkeepinon said:
You might have had a TIA. You should see your doctor to find out. Tell him about these symptoms. I hope you get an answer quickly. I know we have some seemingly unexplainable things happen to us, but it's always better to be safe than sorry, especially with the symptoms you've described.
The splitting of the room is very frightening. I can't think of a healthy reason for this to happen. Vascular compression in the brain can do wierd things, but rather than worry, wouldn't you like to know? Besides, the next time you could be alone, it could be more severe and no one would be available to assist. Your brain health is VERY important. TIA's if treated quickly and correctly can cause minimal damage, but the longer you go without help the more chance you could have a serious episode that could leave you with permanent damage.
Please take care XOXO,
DeAnne
moniquecrader said:
Im gonna do some research on that , thanks! Because that makes a lot of sense for the way I was acting ! I have another question for u if u don't mind beings u have had lupus for so long! Do u have veins in ur arms an hands that swell up. the veins on my right hand on the top swell and stick out a lot farther than usual. also on my right forearm to the right outside of it I have one section of one vein that stays swollen a lot. Have u ever heard of anything like that before. Do u think the few incidents that I had where the right half of the room went up and the left side went down. Its like the room split. I cant explain it that good, I hope u kind of understand what im talking about (: Do u think that was caused by the same thing the other incident was caused from, when I couldn't control how an were I was walking? Sorry for so many questions. Thank u for ur time!
Joeysluv said:
Hi Monique,
A TIA is a 'trans ischemic attack' - a brief interruption of blood flow to a part of your brain. That's not to say you had that. But the advice is to seek MD counsel especially if you have it on an on-going basis..
It could be many things, the past couple of years I've had occas. vertigo attacks- one was so bad, they took me to the ER. It just happened out of the blue, everything went spinning around me and I fell to the floor and couldn't get myself up. The docs couldn't find any reason for it, but pumped me with IV fluids to rule out hypotension. The symptom lasted a couple of days then it was gone. I have felt minor versions of this at occasions, but never that bad as the first one. I also have a history of seizures- brought on by the lupus, so the docs were afraid I had a stroke also and wanted to rule out, but that was ok.
I wish you good luck. I've been fighting lupus for 30+ years and never ceases to amaze me what new symptoms will crop up. I am currently going through Rituxan therapy for severe thrombocytopenia. Not fun. I find comfort in knowing I'm not alone in this fight and I'm not going crazy.
moniquecrader said:
Hi Keepkeepinon, Im not sure what a TIA is? Would you mind explaining it to me. I have another appointment with a new rheumy next week. should I just wait till then or is this something I might need checked out asap?
Keepkeepinon said:
You might have had a TIA. You should see your doctor to find out. Tell him about these symptoms. I hope you get an answer quickly. I know we have some seemingly unexplainable things happen to us, but it's always better to be safe than sorry, especially with the symptoms you've described.
The absolute best thing that I did when I was diagnosed I found out as much information to share with my husband. I took him to one of my docs with me so he could ask questions as well. If you can get your husband to go with you, I think it would be good for the two of you. Tell him the things that you are having trouble with, but I find I can just say "i'm having a bad day" and that's enough for the both of us. The best thing is not to let this become the focus of your life because it CAN do that. Remember the other good things you can still do.
XOXO,
DeAnne
moniquecrader said:
Thanks Ruby, I find a little comfort in knowing that it might not always be this bad. Ive just made year one with it, well one year since I went to the dr for symptoms. I had had symptoms for a few years before but didn't put them all together I just contributed them to stress and depression and things like that. These weird things do make a person feel crazy. I feel sometimes that when I tell my husband about things that he thinks im making them up cause they sound so off the wall.He is a good man and does support me a little but I think if he would research this disease it would help. If it would be me an it was him with it I would research an read as much info as I can. He want! So the only facts he knows is what ive told him an tried to get him to listen while ive read them out loud to him out of books,but its like he isn't really paying attention.
Ruby said:
I got lupus when I was 25, I'm 46 now. The first yr. was a complete nightmare. I rarely even talk about some of the crazy problems I had because they sound crazy. But, I did experience them. If I would tilt my head up towards the ceiling, I would get weak from head to toe, get a low grade fever, and ache all over my body. I called them "attacks". My husband at the time, witnessed these. Also, my blood pressure would drop way low. I would feel completely weirded out. I truly can't explain these attacks. But, I was so ill at the time. I know that it was not a "mental" thing. The blood pressure drop, and the fever proved that. I feel for you. My physician could not help me with this symptom. I must say that after a yr. these episodes got less and less.
Hi!, hope that everything works out for you and yours!!! Yhank God -(Jehovah) for my son , when he started going to my appointments with me helped the family realize and come to terms that i was in sever PAIN . He still goes with me to find out just about all the things what am going through , and it is a real relief , just to know that someone can relate to what am going through with out saying crazie things . Hope that this help you also with other family and friends .... Beverly L. whathappensinvegas said:
moniquecrader,
The absolute best thing that I did when I was diagnosed I found out as much information to share with my husband. I took him to one of my docs with me so he could ask questions as well. If you can get your husband to go with you, I think it would be good for the two of you. Tell him the things that you are having trouble with, but I find I can just say "i'm having a bad day" and that's enough for the both of us. The best thing is not to let this become the focus of your life because it CAN do that. Remember the other good things you can still do.
XOXO,
DeAnne
moniquecrader said:
Thanks Ruby, I find a little comfort in knowing that it might not always be this bad. Ive just made year one with it, well one year since I went to the dr for symptoms. I had had symptoms for a few years before but didn't put them all together I just contributed them to stress and depression and things like that. These weird things do make a person feel crazy. I feel sometimes that when I tell my husband about things that he thinks im making them up cause they sound so off the wall.He is a good man and does support me a little but I think if he would research this disease it would help. If it would be me an it was him with it I would research an read as much info as I can. He want! So the only facts he knows is what ive told him an tried to get him to listen while ive read them out loud to him out of books,but its like he isn't really paying attention.
Ruby said:
I got lupus when I was 25, I'm 46 now. The first yr. was a complete nightmare. I rarely even talk about some of the crazy problems I had because they sound crazy. But, I did experience them. If I would tilt my head up towards the ceiling, I would get weak from head to toe, get a low grade fever, and ache all over my body. I called them "attacks". My husband at the time, witnessed these. Also, my blood pressure would drop way low. I would feel completely weirded out. I truly can't explain these attacks. But, I was so ill at the time. I know that it was not a "mental" thing. The blood pressure drop, and the fever proved that. I feel for you. My physician could not help me with this symptom. I must say that after a yr. these episodes got less and less.
I have the same issue. My clumsiness has increased and gracefulness has decreased. My least favorite that happens the most is running into the door frames by cutting it too close when I turn a corner. I am also on some pain meds that are likely to make me this way, but I believe that this was happening before the pain meds.
THANK U ATHENA! LOL, I TOO HAVE STARTED HITTING DOOR FRAMES AN SUCH. ALSO LATELY I CANT WALK SIDE BY SIDE WITH ANYONE TOO CLOSELY AS I TEND TO KNOCK THEM OVER AS WELL. IVE DONE KNOCKED MY 5 YEAR OLD DAUGHTER OVER SEVERAL TIMES.THANKS FOR THE REPLY!
Athena said:
I have the same issue. My clumsiness has increased and gracefulness has decreased. My least favorite that happens the most is running into the door frames by cutting it too close when I turn a corner. I am also on some pain meds that are likely to make me this way, but I believe that this was happening before the pain meds.
I am new here so hello to all! I have had the exact thing happen. I kept bumping into the walls but only on my left side. It happened intermittently for two months. My PCP doc put me on a half dose of phenergan because she said that sometimes these 'crystals' in your inner ear get out of place from illness. Also, Lupus as we all know inflames anything and everything. Be sure to tell your doctor to be sure its not brain inflamation or something. I know I get tired of calling my rheumy for everything but sometimes it's more serious than I think so please be careful. Be well.