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Medical Forum / Diseases and Disorders / Diabetes / April 2006Doing the happy dance! (for once!)
I saw the endo nutrionist this AM - she was GREAT. Looked at my bg/symptom logs, listened to what I had tried and not tried, then said "You're already doing everything I could tell you to try, but while it's worked for other people you're still shaking anyway. You don't need a nutrionist, you need an endo consult and I'm going to write a note to your doctor saying so". So the wheels for a consult are FINALLY in motion, as long as my GP doesn't block them for some stupid reason. Thanks for all the help and for letting me sound off. This has been the worst 2 months of my life, to date (and I was never sick before so I make a miserable patient). LQ, keeping her fingers crossed. > I saw the endo nutrionist this AM - she was GREAT. Looked at my > bg/symptom logs, listened to what I had tried and not tried, then said > "You're already doing everything I could tell you to try, but while > it's worked for other people you're still shaking anyway. You don't > need a nutrionist, you need an endo consult and I'm going to write a > note to your doctor saying so". YIPPEE. You need a smarter doctor. > So the wheels for a consult are FINALLY in motion, as long as my GP > doesn't block them for some stupid reason. Like having his income reduced by the number of specialist referrals he gives out? Good luck!! Susan > YIPPEE. You need a smarter doctor. What's scary is that this one is tons smarter than the one I just left. >Like having his income reduced by the number of specialist referrals he gives out? I wondered about that, :lol: I really don't understand what the big yank about sending a patient that has been shaking for 2 solid months to an endo is. Prior to this I hadn't been for close to a year and other than the occasional bronchitis episode it's been that way for 10 years. It's not like I'm there every week for little things and wanting attention. I avoid docs offices like the plague, and only go if I REALLY need to. And this time I REALLY needed to. LQ >>YIPPEE. You need a smarter doctor. > > What's scary is that this one is tons smarter than the one I just left. Yikes. :-/ >>Like having his income reduced by the number of specialist referrals he > [quoted text clipped - 3 lines] > yank about sending a patient that has been shaking for 2 solid months > to an endo is. There's often an income incentive from insurers for docs to limit specialty referrals. > Prior to this I hadn't been for close to a year and other than the > occasional bronchitis episode it's been that way for 10 years. > It's not like I'm there every week for little things and wanting > attention. I avoid docs offices like the plague, and only go if I > REALLY need to. And this time I REALLY needed to. Hope you get a STAT referral and appointment. Susan >> YIPPEE. You need a smarter doctor. > > What's scary is that this one is tons smarter than the one I just > left. I prefer dumber ones who admit they haven't got all the answers and refer. >> YIPPEE. You need a smarter doctor. > What's scary is that this one is tons smarter than the one I just left. People, some of whom are doctors themselves, sometimes try to tell us that doctors are always highly educated intelligent experts who must inevitably know best. Those of us who went to a university with a medical faculty know the scary truth: they make doctors out of medical students :-)  SignatureChris Malcolm cam@infirmatics.ed.ac.uk +44 (0)131 651 3445 DoD #205 IPAB, Informatics, JCMB, King's Buildings, Edinburgh, EH9 3JZ, UK [http://www.dai.ed.ac.uk/homes/cam/] Glad the wheels are in motion. I'd consider getting a new GP (after you see the endo, though, assuming the GP plays good). :: I saw the endo nutrionist this AM - she was GREAT. Looked at my :: bg/symptom logs, listened to what I had tried and not tried, then [quoted text clipped - 11 lines] :: :: LQ, keeping her fingers crossed. > saw the endo nutrionist this AM - she was GREAT. Looked at my > bg/symptom logs, listened to what I had tried and not tried, then said [quoted text clipped - 5 lines] > So the wheels for a consult are FINALLY in motion, as long as my GP > doesn't block them for some stupid reason. Hi LQ, I am very happy for you, now that it appears you are finally destined for that endo consult. It is sad that some GP's acting as gate keepers to the world of specialists actually seem to be working adversely to the best interests of their patients.... It is almost like the GP does not want to admit that he/she does not have the answers or the skill and competence to deal with a particular problem. Please keep us informed of how things develop. Will, T2 LQ that is indeed good news for a change. I hope that this endo can pinpoint the exact problem and get you on the road to better health. Loretta -- In tribute to the United States of America and the State of Israel, two bastions of strength in a world filled with strife and terrorism. Yippee! Michelle, on the T2 spectrum > I saw the endo nutrionist this AM - she was GREAT. Looked at my > bg/symptom logs, listened to what I had tried and not tried, then said [quoted text clipped - 11 lines] > > LQ, keeping her fingers crossed. This is *such* good news! Let's hope that referral doesn't take too long. Priscilla >I saw the endo nutrionist this AM - she was GREAT. Looked at my > bg/symptom logs, listened to what I had tried and not tried, then said > "You're already doing everything I could tell you to try, but while > it's worked for other people you're still shaking anyway. You don't > need a nutrionist, you need an endo consult and I'm going to write a > note to your doctor saying so". Hallelujah! Keep that nutritionist!! Nicky. SignatureA1c 10.5/5.4/<6 T2 DX 05/2004 1g Metformin, 100ug Thyroxine 95/74/72Kg > I saw the endo nutrionist this AM - she was GREAT. Looked at my > bg/symptom logs, listened to what I had tried and not tried, then said > "You're already doing everything I could tell you to try, but while > it's worked for other people you're still shaking anyway. You don't > need a nutrionist, you need an endo consult and I'm going to write a > note to your doctor saying so". Woohoo :) > So the wheels for a consult are FINALLY in motion, as long as my GP > doesn't block them for some stupid reason. That's when you change doctors. I just came in on this, but wanted to add my 0 cents -- You're literally shaking? Your hands, feet, entire body? I assume all the general stuff has been checked -- thyroid (to make sure you're not hyperthyroid). If you're shaking, it sounds as though you need a neurologist, not an endocrinologist -- unless the shaking is caused by your endocrine system. Since I don't know the characteristics of your shaking, I'm just shooting blindly, but make sure you consider a neurologist. > I just came in on this, but wanted to add my 0 cents -- You're > literally shaking? Your hands, feet, entire body? [quoted text clipped - 6 lines] > system. Since I don't know the characteristics of your shaking, I'm > just shooting blindly, but make sure you consider a neurologist. Well until LQ can answer I will explain mine. The first symptom was slurring (but if I wasn't talking to anyone, I wouldn't know about it) then I would get was a sudden weakening of the legs, enough that the legs couldn't hold me. Once I had dropped, the arm muscles gave way and then I would get an all over severe shaking, from head to toe. Fingers were too weak and shaky to even hold a spoon. Sometimes I could feel my brain "shuddering" inside the head - only way I can describe it. My heart would be racing and fluttering, I couldn't manage a smile. My GTT was the last test of 6 months of tests, the first was for MS, extremely painful, then thyroid, ECG's, and a host of other things before the GTT. I saw a neurologist first, a cardiologist did the thyroid testing and lastly I was sent to endo. The cardiologist twigged it might be endocrine related. Wow, Ozgirl. That has to be frustrating looking for an answer. I'm surprised that the cardiologist did the thyroid testing -- it would seem to be in the endo's realm, but that's what I would have thought, too, but I'm not a doctor, just a curious person! You said your test for MS was extremely painful. Was it a spinal tap? (Sorry, I don't read every message in this forum, and I suspect you've already discussed it in here, as you are keeping many posters busy 24x7 with writing responses...hee hee hee :-)) >From my understanding, MS is typically diagnosed by MRI scans (with and without contrast) of the brain and/or spinal cord (thoracic, lumbar, and/or cervical) to check for demylination. If that's positive, then a spinal tap checks for abnormal proteins. Did they go right to the spinal tap for you? How are you doing now? If you're still having physical problems, has your neurologist considered the rare and mysterious Guillain-Barré syndrome? (Your description brought up a mystery diagnosis I saw once on TV, so I just thought I'd throw it out at you since it seems related to MS, but it deals with a peripheral nervous system disorder, rather than the MS's central nervous system.) It's crazy how it can take years to find the right diagnosis, just so we know what name to give it! > Wow, Ozgirl. That has to be frustrating looking for an answer. I'm > surprised that the cardiologist did the thyroid testing -- it would > seem to be in the endo's realm, but that's what I would have thought, > too, but I'm not a doctor, just a curious person! To rule out anything cardiac related. When it wasn't cardiac or thyroid etc I was referred onwards.. ;) > You said your test for MS was extremely painful. Was it a spinal tap? > (Sorry, I don't read every message in this forum, and I suspect you've > already discussed it in here, as you are keeping many posters busy > 24x7 with writing responses...hee hee hee :-)) I think it might be nerve conduction tests. They tested my arms and legs with what felt like and probably was, electricity ;) >>From my understanding, MS is typically diagnosed by MRI scans (with >>and > without contrast) of the brain and/or spinal cord (thoracic, lumbar, > and/or cervical) to check for demylination. If that's positive, then > a spinal tap checks for abnormal proteins. Did they go right to the > spinal tap for you? No, this was 1978 and I don't think the specialist really believed that MS was what was causing my symptoms but as with the cardio, he was ruling out possibilities. This was a large teaching hospital full of professors, every visit usually entailed having a swag of medical students in the room as well. I think more rather than less testing was probably beneficial for all involved - collecting case histories. Maybe I was an interesting case study. > How are you doing now? If you're still having physical problems, has > your neurologist considered the rare and mysterious Guillain-Barré > syndrome? (Your description brought up a mystery diagnosis I saw > once on TV, so I just thought I'd throw it out at you since it seems > related to MS, but it deals with a peripheral nervous system > disorder, rather than the MS's central nervous system.) I only get RH these days when I eat too many carbs at one sitting and the symptoms are nowhere near as severe as they were 28 years ago. > It's crazy how it can take years to find the right diagnosis, just so we know what name to give it! I think if I had been referred to the endo in the first place I would have known practically straight away. As it was, my GP was clueless (not uncommon), he referred me to the person he felt might be the most logical one to find answers and waiting six months to finally get an answer was probably a good thing because a pattern had become established. I had more concrete symptoms to give the endo and I had found out before I saw him that the symptoms co related to meals. It took 6 months BTW because once I saw each doctor it was at least two spaced out appts then getting referred to another specialist and waiting to be seen etc. Strange thing was that the doctor referred me to this hospitals outpatient dept in the first place so I wouldn't have to pay and I ended up seeing professors, the teachers of their "trade". Yes, electric shocks were probably one of the electrical tests where needles were stuck in your muscles to see if they could make you dance (hee hee--just kidding). I saw a wonderful description for it -- "Most patients find that this test is uncomfortable but tollerable." Seems like the author of that sentence contradicted themselves! You called it RH -- I haven't been apying attention -- what does RH stand for? It's erie how both you and LQ have the same kinds of things happening after eating. I guess there's only so many limited number of expressions of disorders in the body, though. *sigh* Guillain Barre syndrome has been known to physically make people incapable of walking, and then it gets better in 30-60 days. Yes, those spaced out appointments can be very frustrating, especially while in distress. It shows how many openings there are in the medical world for more much-needed doctors. Ozgirl, Susan, and myself have all had similiar things happen, in varying degrees. Ozgirls RH (reactive hypoglycemia) problem is/was way worse than mine - she had to eat every 1/2 hour at one point, and her legs would collapse and vision would go funny if she got it wrong. I can go 2 hours or so, and all I do is shake, which while sucks is far better than collapsing. I may have a more active counterregulatory system than Ozgirl - I seem to get the adrenalin shot. liver glucose dump and the shakes before the bg gets so low I'd collapse. Susan was very RH at the beginning of her blood sugar adventure, enough where a bite of carby food would make her get clammy and weak. It eventually went away for her. I'm hoping it does the same for me. LQ > Yes, electric shocks were probably one of the electrical tests where > needles were stuck in your muscles to see if they could make you dance > (hee hee--just kidding). I saw a wonderful description for it -- > "Most patients find that this test is uncomfortable but tollerable." > Seems like the author of that sentence contradicted themselves! > You called it RH -- I haven't been apying attention -- what does RH > stand for? Reactive hypoglycemia. meaning hypoglycemia caused from a reaction - e.g. food. Of course it is a bit more complicated. The symptoms are caused by our natural insulin working too well which in turn causes a rapid drop in bg. It is the rapidity of the drop that causes the actual hypo like symptoms because for a lot of RH sufferers the bg doesn't actual go into recognised hypo territory. In fact is better referred to as idiopathic postprandial syndrome because the hypoglycemia part is confusing. RH is a recognised pre cursor to type 2 diabetes, just as gestational diabetes is. It just means that some people gave an impairment long before frank diabetes. It can be a good tool for diabetes prevention, knowing you have the potential to become a diabetic. In 1978 and even for my pregnancies, I was told both conditions were precursors but no one told me how to prevent type 2 developing. Hopefully these days there is more information given to patients. RH is rarely severe, but when it is, it is extremely hard to find the right amount of carb to cover normal living and any exercise. A couple of grams too much and wham, it's like losing total control of yourself. Eventually the body adjusts though. A very good description, Jan. We were living in Ankara ('71), and Jim cam home one day to find me passed out on the sofa with my three small children playing (no communication available (no telephone, tv, radio, etc)), and he had a hard time waking me. This is why the doctor had *tunnel* vision for the RH, and failed to zero in on the DM (200+). Once I started on the *diabetic* diet things calmed down for me, but from that point on it was pretty much like you described it (not sure about the brain shuddering :-) if I would stray too far from the diet. As the years progressed I would forget, and then I'd find myself on the floor. There have been times that I described it to Jim as I could hear, but I could not speak. Not totally *out* but unable to communicate. Until here, I've never personally known anyone else with RH. There was a time (the years all run together :) that RH was *fashionable* and doctors were passing out the dx left and right, and usually without the lab work to confirm it. That made it hard for the doctors to take me seriously, especially as they considered it a *female* problem.... meaning a psychosomatic problem among women, and then, too, on top of the systemic autoimmune diseases (Lupus, RA, etc). They had me to the point that even *I* was about to believe I was nuts! Plus, they'd talk to Jim, and then this made him doubt me whenever I'd have the *fainting spells*. Now, he is my biggest supporter, but for so many years he thought if the *doctors* said it, then it must be so!!! LOL Billie Signaturebh-wages at swbell.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ : The first : symptom was slurring (but if I wasn't talking to anyone, I [quoted text clipped - 8 lines] : head - only way I can describe it. My heart would be racing : and fluttering, I couldn't manage a smile. The best way I can describe it is like being jabbed with an epi-pen (those epinephrine things they use for bee stings). It's mostly an internal shakiness, like very bad jitters, that when really bad is visible outside in the form of shaking hands and chattering teeth. Most of the physical shakes are upper body, from waist up. Its probably endocrine as it seems to be tripped off by eating. Early on in this I was getting it when it wasn't related to eating but that seems to have mostly gone away. Fortunately I haven't gotten the weak legs or vision problems like Ozgirl did. It seems that my liver is pretty quick to jump in and try to correct a low so I never get the to the "close to blacking out" stage, but instead I get the shakes from the epinephrine surge as my brain gooses my liver to put more glucose out there. LQ That's really interesting, LQ. I wish I had an idea what your liver was doing. It would be interesting to have you hooked to a continuous blood glucose monitor during these events. The question is -- what is happening in your body upon food intake that causes it. Your frustrations must be even greater when the symptoms seem to change. Some doctors like cause-and-effect symptoms that do not change, and it can really be hard to help in the detective work. I wonder if there would be a way to measure particular stress hormones in your body during these events? If your BG goes up high while eating, does it happen if you eat a gigantic head of lettuce, too? It's as if your digestion is also accidentally regulating your stress hormone -- as if the power switch to the two are hooked to the same light switch! :-/ I wish I knew what my liver was doing, too :lol:. I've collected a LOT of data from testing myself. Not all of it makes sense. If I'm shaky and the bg is running higher than it should (low 100s, AM fasting or if I haven't had enough food during the day) when I eat the bg first goes down by 10-20 pts, not up immediately. I assume that the initial insulin let go from eating is turning off my liver, which had gotten goosed with adrenalin by the brain when I went low at some point before that. So I'm not really feeling the low in some cases, I'm feeling the response to it. I wonder if sometimes when I eat, feeling initially ok, the initial insulin release sends me low until the food digests so I get the shakes/dump, until it rises again. Then sometimes it's the actual drop I feel, if I ate too many carbs and it spiked, then tanked. I don't think there is any way to continually measure plasma stress hormones outside of a lab. I've been through enough at this point that I don't know if I'd volunteer anyway :lol: Things have been markedly better in the last few days - less inappropriate rises, overall lower numbers, and less shaking. I actually slept last night, too! The only thing different is that I had acupuncture on Wednesday and also got religious about taking some minerals (chromium and magnesium). I've been at the "will try anything point" so I've thrown too much at it and now don't know what works! Not sure if I care though - as long as I feel human again. LQ > I wish I knew what my liver was doing, too :lol:. > [quoted text clipped - 6 lines] > I assume that the initial insulin let go from eating is turning off my > liver, Correct. I have DP every day and after breakfast I go down to normal rather quickly - by normal I mean normal for me because all my bg's are in normal range. No wait , I guess you could say my fastings are still in impaired area, but not in diabetic area. I remember a case where something like this happened to a person who was on Medical Mysteries (a Discovery Channel Health channel). I can't remember exactly what it was, but my wife remembers a bit of it. She said it had something to do with a tumor that was producing a substance that looks like insulin in the body, but that it isn't. After he had it removed, everything became normal. But that wasn't until 10 years of suffering from it. Gosh darn, I wish I could remember more, but I'm sure that's been explored for you by now. It wasn't insulin causing the lows, but something that the body recognized as insulin. The response of your body to food makes it apparent that there's either too much insulin, or too much sensitivity to insulin, or too much of an incretin memetic, or too much or presence of a hormone that looks like insulin. It's irking me that I can't remember that case on TV. I guess that's why I didn't go to medical school. :-P Hopefully one of the three of you (Oz,LQ, and Susan) will get a positive diagnosis and treatment, so that the other two can follow that same path!! > I remember a case where something like this happened to a person who > was on Medical Mysteries (a Discovery Channel Health channel). I can't [quoted text clipped - 21 lines] > positive diagnosis and treatment, so that the other two can follow that > same path!! Could it be an insulinoma? I'd think a 24 hour urine collection may be helpful in LQ's case. I haven't had RH in several years; in my case, low carbing ended it, and I can go 5 hours, sometimes 6, before I feel like I *really* need to eat. Susan I have had *episodes* fairly recently, ending up flat on my face with the last big one, when I tried to make it to the floor without losing it, but unable to *catch* myself from falling (my forehead hit the floor first :). Had to just lay there ("Help, I've fallen and can't get up," doesn't sound like a silly ad anymore!), finally managing to crawl back to the couch, however, now there are so many different illnesses that it is hard to tell exactly what it was from. It is possible that I ended up on the floor due to my legs not holding up due to the muscle weakness from the neuropathy. Signaturebh-wages at swbell.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ : I haven't had RH in several years; in my case, low carbing ended it, and : I can go 5 hours, sometimes 6, before I feel like I *really* need to eat. : : Susan > Hopefully one of the three of you (Oz,LQ, and Susan) will get a > positive diagnosis and treatment, so that the other two can follow > that same path!! I did get a positive diagnosis and treatment plan 28 years ago ;) RH is a recognised endocrine problem. Just hard sometimes to strike the right balance, too many carbs would cause a negative insulin response. Too little and you feel hypo from that. > She > said it had something to do with a tumor that was producing a substance > that looks like insulin in the body, but that it isn't. Could have been an insulinoma - it's a pancreatic tumor of (I think) the islet cells and pretty much goes freelance, producing a bunch of insulin willy-nilly. > The response of your body to food makes it apparent that there's either > too much insulin, or too much sensitivity to insulin, or too much of an > incretin memetic, or too much or presence of a hormone that looks like > insulin. In my case (and maybe that of the other ladies, though I don't know their numbers) it appears that the first gush of insulin you are supposed to get when you eat is either slow, missing, or damaged in my body so my bg goes too high. Then when the 2nd phase comes in it comes on hard and fast and overshoots the mark, taking care of all of that spiked glucose and then some, sending me low or at least down very quickly. I've probably had it awhile but have been "feeding the crashes" - when I got hungry or shaky, I'd eat again (lots of carbs, too) not realizing that I wasn't going from normal to low but probably from high to normal. Needless to say this probably caused more damage, plus colossal weight gain. > Hopefully one of the three of you (Oz,LQ, and Susan) will get a > positive diagnosis and treatment, so that the other two can follow that > same path!! The other gals have had it awhile, been diagnosed, and have figured out how to deal with it. I'm new to it (found that I had too-high fastings (104) 2 months ago with a cheapo meter and the RH showed up in a big way once I stopped feeding the crashes) and am still wrestling with it. Docs haven't been much use other than as roadblocks. I'm pretty severely low-carb right now (mostly following the Protein Power plan - I really like that book) with only about 7-10 g of carbs per meal and 6 per snack and it's working ok right now. More than that and I risk an "incident". Even a half cup of cottage cheese for snack today had me low at 1 hour (only 6 g carbs in that). But I'm actually having my 2nd decent day in a row, this is a new thing!! For whatever reason the bg movement isn't causing me as much problems now, I don't seem to feel every little twitch as bad. Not sure if I should thank the acupuncturist, the vitamin manufacturer, God or whatever, but I'm grateful. And I do thank the other shaky ladies here (Ozgirl and Susan) who have been extremely helpful. LQ, almost feeling human again > But I'm actually having my 2nd decent day in a row, this is a new > thing!! For whatever reason the bg movement isn't causing me as much > problems now, I don't seem to feel every little twitch as bad. Not sure > if I should thank the acupuncturist, the vitamin manufacturer, God or > whatever, but I'm grateful. Great! If I had to vote, I'd say probably your body's adjustment with time, plus, *maybe* those occasional hits of Azmacort. In any case, it's good news. If nothing else, acupuncture may've chilled you out enough to feel your body improving. > And I do thank the other shaky ladies here (Ozgirl and Susan) who have > been extremely helpful. It's always a good feeling here when someone has been helped by our experiences. So, whaddup with the endo referral, anyhoo? Susan > So, whaddup with the endo referral, anyhoo? Argh, who knows. I can't get their office to return phone calls. The 24 hour urine results and the rec from the endo nutrionist should be in his hands by now (I gave it a few days to let it all trickle through to him, no pun intended :lol:) but I've heard nothing. Usually his office sends out a summary after each visit (a nice feature I never had with any other doc ) but I haven't gotten one of those yet from my pleading desperate visit 10 days ago either. So I dunno what's up. If the shaking stays stopped I may not need the visit, though it would be nice to have a pros view of things. I also really don't want to take a GTT - the carb-up I'd have to do before it would likely kill me, to say nothing of the test itself. I've lost 2 months of my life already, carbing up and coming back down after it would likely destroy another month. LQ >>So, whaddup with the endo referral, anyhoo? > [quoted text clipped - 8 lines] > > So I dunno what's up. Hmmmm... How many calls would that be, unreturned? > If the shaking stays stopped I may not need the visit, though it would > be nice to have a pros view of things. I also really don't want to [quoted text clipped - 4 lines] > > LQ I understand, and maybe it wouldn't be necessary. Maybe the 24 hour urine test has turned something up? Susan According to the doctor at the time ('71) he said it *was* too much insulin, but if he told me the *why* of it, I do not remember it. Not sure what you mean by a "positive diagnosis" since RH was positively diagnosed with a GGT. Though the doctor failed to catch the positive DM dx, he *did* tell me I could expect diabetes later in life ......... well, I guess this is "later in life." LOL Signaturebh-wages at swbell.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ "JasonJayhawk" <ksjayhawk@gmail.com> wrote... : The response of your body to food makes it apparent that there's either : too much insulin, or too much sensitivity to insulin, or too much of an [quoted text clipped - 4 lines] : positive diagnosis and treatment, so that the other two can follow that : same path!! For SURE!!! Signaturebh-wages at swbell.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ : I've been at the "will try anything point" : : LQ |
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