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Medical Forum / Diseases and Disorders / Lupus / July 2006Strange couple of days...
Well after bleating to you all about how well I've been, I've topped it off by having a very strange couple of days (well, week or so actually). For those who didn't read it earlier, I was bragging about having 2 years being REALLY well with no symptoms to speak of and how cool that was. Its also been 2 years since I've seen my family doc or rheum man (baaaaaad girl) just been in complete denial and writing my own scripts . I know, I know..... Well in the wee hours of Sat before last (almost 2 weeks ago) I had a seizure in my sleep. Short one, maybe 5 mins or less, as with all seizures I knew nothing about it until I woke up a few hours later feeling like I'd been hit by a truck with a worried husband hovering over me. I've done it before, but not for a long time. I felt lousy ,most of that week...no fever, pain or anything, just really tired. A week passed, then on Saturday I had this sudden onset of dizziness-- more a off balance kind of feeling. Not fainty not spinning, just like the whole world was on about a 30 degree slope to the left. It wasz very disconcerting and I stumbled around the house,shops etc until it left as suddenly as it came on Sunday lunchtime (almost exactly 24 hours later). Monday and bTuesday all was fine and then Tuesday evening I was sitting watching TV and suddenly it was back with a vengeance. It was like someone moved the whole world again but way worse....I tried t get up and fell over, walked down the hall to the bedroom and kept bouncing off the walls as the floor rocked and rolled beneath me, then made it to the bedroom and vomited for an hour. After four hours, it simply disappeared. I don't like all this at all. It certainly not the kind of dizziness I would expect from a virus, middle ear or anything like that and I have none of the symptoms to support it. It is very neurological in nature, and the short sharp and sudden onset and departure makes me think I have started having more TIAs again (bl**dy damn S**t). My TIAs in the past have usually involved visual loss or speech difficulty rather than balance, but anythings possible. I have made an appointment to see rheum man in 2 weeks (24th) but I'm not happy. Thanks for listening Lyndal Lyndal, I'm so sorry that your two years of being virtually symptom free has been broken by the the start up of a seizure and the "off balance" feeling. Hopefully you will get your answers and a solution on the 24th! You are in my prayers! Hugs, Sherry > Well after bleating to you all about how well I've been, I've topped it > off by having a very strange couple of days (well, week or so actually). [quoted text clipped - 34 lines] > Thanks for listening > Lyndal thanks :) > Lyndal, > [quoted text clipped - 46 lines] >> Thanks for listening >> Lyndal Well, you're the doc but .... It sure sounds like TIA's Have you had any change in medication in the last few weeks/months? Is there anything you are on that you would build up a resistance to and need more of it to work efficiently? May I suggest not driving for a while? (Or maybe you don't do that anyway with your past history.) ((((HUGS)))) Bev > Well after bleating to you all about how well I've been, I've topped it off > by having a very strange couple of days (well, week or so actually). For [quoted text clipped - 33 lines] > Thanks for listening > Lyndal Nope, nothings changed....except my workload / stress level with my new job. And I havent driven for four years since my first stroke... I could...but I don't think I should. Lyndal > Well, you're the doc but .... It sure sounds like TIA's > [quoted text clipped - 60 lines] >> Thanks for listening >> Lyndal Oh Lyndal I am so sorry that you are having such a bad time! good luck with the doc appt and take it easy, very easy till then if you can! Keep us updated?.... wishing you the best... and yes, right away TIA came to my mind ... so sorry!! my hugs and love, Shelagh http://clik.to/lupus > Well after bleating to you all about how well I've been, I've topped it off > by having a very strange couple of days (well, week or so actually). For [quoted text clipped - 33 lines] > Thanks for listening > Lyndal > Well in the wee hours of Sat before last (almost 2 weeks ago) I had a > seizure in my sleep. Short one, maybe 5 mins or less, as with all seizures [quoted text clipped - 14 lines] > floor rocked and rolled beneath me, then made it to the bedroom and vomited > for an hour. After four hours, it simply disappeared. 4 hours ? vomiting ? Please get checked. Hugs J Why wait two weeks, is that the quickest you can get in Lyndal? I agree with you it might be TIA's and then again it might be vasculitis. That sounds like it too. time for an MRI and see what is going on in there. I suggest, and take it for what it is worth. GET YOUR butt to the ER or call that rheumy and tell him things are progressing and YOU need to see him or her NOW. This is not a WAITING 2 weeks deal. And about your cussing? WELL SH*T GO AHEAD LOL. I had a friend who had terrible headaches and turned out she did indeed have vasculitis and not TIA's like they thought. Meant for her IV's of steriods to counteract that and lots of REST. Man I hope this is a simple fix for you. But it is quite odd to have seizure in your sleep unless it is SERIOUS woman.... good luck lady and keep us informed. janers Thanks gang Unfortunately that is the quickest I can get in without doing the ER thing...and I hate to say it, but if I appear in ER the rheumy is likely to admit me,. I know, maybe thats the right thing to do, but I can't right now. I'm not completely insane, if it happens again or gets worse I will, but I have a huge deadline at work which the future of our medical school literally depends on and I am a key player (hence the increased stress lately) It finishes on the 22nd..so I see the specialist on the 24th then Roman (the rheum) can do whatever he wants with me. Just gotta get through the next 2 weeks... IV steroids was the solution for the last lot of dramas I had....maybe time again Lyndal > Why wait two weeks, is that the quickest you can get in Lyndal? I agree > with you it might be TIA's and then again it might be vasculitis. That [quoted text clipped - 20 lines] > > janers >Well after bleating to you all about how well I've been, I've topped it off >by having a very strange couple of days (well, week or so actually). For >those who didn't read it earlier, I was bragging about having 2 years being >REALLY well with no symptoms to speak of That's usually a precursor to trouble... I've forgotten (if I ever knew) - have yo been checked for Hughes (antiphospholipid) syndrome?  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Sorry Andy, its been a while since I told my whole story. Hughes is the one thing I know I have! Was diagnosed after a stroke four years ago, have been on immunosuppressants, steroids and warfarin ever since, the only question has been whether I have mixed connective tissue disease or lupus as well... Lyndal >>Well after bleating to you all about how well I've been, I've topped it >>off [quoted text clipped - 7 lines] > I've forgotten (if I ever knew) - have yo been checked for Hughes > (antiphospholipid) syndrome? >Sorry Andy, its been a while since I told my whole story. Hughes is the one >thing I know I have! Was diagnosed after a stroke four years ago, have been >on immunosuppressants, steroids and warfarin ever since, the only question >has been whether I have mixed connective tissue disease or lupus as well... >Lyndal A philosophical question... OK, so you have a galaxy of symptoms, including enough of the relevant ones to get a Hughes diagnosis. Say that your next Rheumie-encounter results in a diagnosis of SLE. Would you then consider that you have two different diseases, or that you have one underlying disease which meets the criteria for both diagnoses? SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Ahh,.... my rheum originally said I had Hughes and that it could be primary (unusual but not impossible) or secondary. More likely to be secondary...but to what? Over the four years he has said secondary to mixed CTD, undifferentiated CTD, fibromyalgia and the most honest one "I dunno" (!!). SLE may well be next. Strictly speaking, if that were the case, I think I would still have 2 conditions (although intimately linked) as I have high titre anticardiolipin ABs etc and enough thrombotic / embolic episodes to sit up and take notice. So far, ds DNA has remained negative. See what next week's bloods show. By the way, just got home from the movies with my family (its 9pm) and its a cold night and my Raynaud's is back...another bad sign - it disappeared last winter. hhhmmmmmmmm Lyndal >>Sorry Andy, its been a while since I told my whole story. Hughes is the >>one [quoted text clipped - 10 lines] > consider that you have two different diseases, or that you have one > underlying disease which meets the criteria for both diagnoses? PS. My dad was diagnosed with SLE in the 60's and only got the diagnosis of secondary Hughes syndrome in the 80's (it was pretty new and exciting in Australia then) by which stage he'd had lots of problems. He died in 1996. (he was only 55). Rheum keeps saying to me "You definitely have something, but no, you don't have SLE......yet..." L > Ahh,.... my rheum originally said I had Hughes and that it could be > primary (unusual but not impossible) or secondary. More likely to be [quoted text clipped - 27 lines] >> consider that you have two different diseases, or that you have one >> underlying disease which meets the criteria for both diagnoses? Lyndal, if you had a patient with your symptoms what would you say? I know docs don't treat themselves but I think we often have gut feelings and we know what we feel. So if you put those gut things together with your symptoms and blood work and you step back and look objectively at it - what do you have? Then what would you tell your patient? I have a great doc who is one of those who will say "I donno" which I respect more than the lines of bullsh*t that other docs will use. But my doc will have an answer for me the next time. I know he researches whatever it is. I was his first real lupie that he had to treat. He knew very little when we started but oh does he know his lupus stuff now! He'll tell me about something going on with some research at some teaching hospital and what strides they are or are not making. MD does not stand for Medical Deity. I think you are a very type A person and the strive for perfection is part of what makes you what you are - just remember no one is perfect and that includes doctors and YOU! Take the stress off, do your job, do it well, and remember you cannot be everything to everybody! Do you have some time scheduled into your hectic daily schedule for you to at least put your head on your desk and listen to some quiet music? A nap is asking too much but you might need some down time with a real big DO NOT DISTURB sign! Bev > Ahh,.... my rheum originally said I had Hughes and that it could be primary > (unusual but not impossible) or secondary. More likely to be [quoted text clipped - 26 lines] > > consider that you have two different diseases, or that you have one > > underlying disease which meets the criteria for both diagnoses? Well if it helps I am currently browsing the web, writing blog,and listening to music as a form of. electronic procrastination. (I'm listening to Missy Higgins who is a great Aussie singer/songwriter- one of my faves- very young and talented ++ and such a fresh change from all the cheesy Idol-type pop we hear these days http://www.missyhiggins.com/ ) I SHOULD be writing curriculum timetables instead and will have to get back to it shortly :( Thanks Bev, and I know you're right. I just can't deal with it in the next two weeks so, stupidly or not, I'm just going to cross all the appendages until the 24th and hope the world stays stable. I havent done any bloods for months and months so will be doing that this week at least and perhaps it will shed some more light on the subject. Interestingly I had a look at the Hughes Foundation website (as I have no patients with this except myself I ma not an expert) and there is a mention of dizziness as a common symptom and, you guessed it, caused by thrombotic events. Dammit. Lyndal (taking warfarin and denial in equal doses!!) > Lyndal, if you had a patient with your symptoms what would you say? > [quoted text clipped - 69 lines] >> > consider that you have two different diseases, or that you have one >> > underlying disease which meets the criteria for both diagnoses? |
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