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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by purpleydog on Apr 23rd, 2008, 5:31pm Has he had an MRI, or an EEG? Two tests that come to mind, right away. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by cynjeep89 on Apr 23rd, 2008, 5:44pm Narcolepsy or seizures, perhaps? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by purpleydog on Apr 23rd, 2008, 5:55pm on 04/23/08 at 17:43:01, Blue_Duck wrote:
Sometimes to get an accurate picture of the blood vessels in the brain, they shoot you with radioactive dye, and then do an MRI, or CT scan, so they can see if the blood is flowing like it should, maybe there is a squeezed vessel. I am not a doc, and I'm just guessing. Maybe this is not head related. Has his heart been checked? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Linda_Howell on Apr 23rd, 2008, 6:36pm I'm very curious as to why you think that your 13 yr. old cousins symptoms come anywhere near to CH.? You said: Quote:
Not being a Doctor, I certainly can't give you any medical advice but I'm 999% certain it isn't Clusterheadaches. Sounds more like symptoms narcoclepsy or some type of siezure. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Jackie on Apr 23rd, 2008, 6:43pm TIA ? :-/ |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Redd on Apr 23rd, 2008, 7:16pm Thats what I was thinking too Jackie... |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by nani on Apr 23rd, 2008, 7:26pm I would certainly follow up on this. Certain migraines can cause TIAs (transient ischemic attacks, or mini strokes). Read about these two migraine types and get him an appointment with a neuro. Thanks for lookin' out for him. :) http://headaches.about.com/od/migrainediseas1/a/hemiplegic_mig.htm http://headaches.about.com/od/migrainediseas1/a/basilar.htm |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Linda_Howell on Apr 23rd, 2008, 7:42pm lol Honest Cyn...I did not see your post when I said the same exact thing as you said. That said, I would think that the tests that the Doctors did run would show something..hmm |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by MJ on Apr 23rd, 2008, 8:24pm on 04/23/08 at 18:43:03, Jackie wrote:
Suspect the same. Have seen this more than once. Its hard to spot without being on monitors. Secondly due to age harder still. from: http://www.ninds.nih.gov/disorders/tia/tia.htm "What is Transient Ischemic Attack? A transient ischemic attack (TIA) is a transient stroke that lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted. TIA symptoms, which usually occur suddenly, are similar to those of stroke but do not last as long. Most symptoms of a TIA disappear within an hour, although they may persist for up to 24 hours. Symptoms can include: numbness or weakness in the face, arm, or leg, especially on one side of the body; confusion or difficulty in talking or understanding speech; trouble seeing in one or both eyes; and difficulty with walking, dizziness, or loss of balance and coordination. Is there any treatment? Because there is no way to tell whether symptoms are from a TIA or an acute stroke, patients should assume that all stroke-like symptoms signal an emergency and should not wait to see if they go away. A prompt evaluation (within 60 minutes) is necessary to identify the cause of the TIA ". Other neural net short circuits are possible causes as well. Needs to be connected to monitors as these are all momentary glitches and routine scans may not show any issues. Good luck. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by MJ on Apr 23rd, 2008, 8:33pm To add. my mother had very similar issues and nothing ever showed on monitors either. Docs performed a test on each nerve operating the heart and found an intermittent short circuit between 2 that caused the heart muscles both to expand and contract simultaniously at wich time she would fall over out cold for short periods of time. Then back to normal. A little surgical wiring correction, and a specialized pacemaker and good as new. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Annette on Apr 23rd, 2008, 8:43pm Temporal lobe epilepsy ? Minor stroke ? Vagal nerve attack ? Heart block ? If he STILL has the weakness on the left side and trouble walking, its not TIA. TIA is only transient and the weakness is there during the attack but afterwards the person's neurological state comes back to normal. What are the results of the tests ? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by MJ on Apr 23rd, 2008, 8:49pm on 04/23/08 at 20:43:36, Annette wrote:
On occasion this is true. Sorry Doctor but overall your statement is incorrect. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Annette on Apr 23rd, 2008, 9:29pm TIA is caused by a temporary loss/reduction of blood flow to a specific part of the brain ( called ischaemia ), enough to cause brain cells to starve of oxygen producing the symptoms. It is most commonly caused by a blockage in the blood vessel or a bleed in the brain or heart/circulation problems. ( A bleed would be easily seen in an MRI ). However this is only transient, ie the blood flow is restored after the attack and the brain cells recover so the symptoms resolve, this commonly occurs within the hour, symptoms should not last longer than 24 hrs. There is no/minimal permanent damages to the tissue. Please tell me where does it say a TIA would produce symptoms lasting for days ? The OP says the person has persistent left sided weakness, trouble walking, complete amnesia and continual memory problem for 5 days now. This does not look like TIA. Edited to add: Its not clear how many times this person is getting these "attacks" per day but the way I read it its several times a day worse between 10 and 2. Since the symptoms are severe enough ( affecting the whole left side and walking and causing complete amnesia ) it has to be a large area affected in the right hemisphere. If a person gets several TIAs a day affecting a large brain area for 5 days in a row ( ie more than 10 TIAs continually ) , it would have led to a much larger stroke and be seen in the MRI. And I wonder what " mother neglectful" means ? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Charlie on Apr 23rd, 2008, 9:33pm Quote:
I have epilepsy and during the attack I can feel no pain at all. I have had a T. I. A. as well. It was just some weakness but it is scary. I take stuff for it now and things seem better. Hope you get some idea about this soon. Charlie |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by DonnaH_again on Apr 23rd, 2008, 10:20pm The gentleman to whom I am a care giver has TIA's rather often and they never leave a permanent effect. It's just like Annette says. It's very frightening while they are happening, but he bounces right back within minutes after the attack. This sounds more like a stroke, which my guy has had also. He had a stroke about a year ago, and another 5 weeks ago. The most recent one apparently happened under the old one and didn't show on the MRI, but he lost complete use of his right side and is just now regaining a little movement after being in rehab with physical and occupational therapy for five weeks. Sometimes, these things are hard to see. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by AussieBrian on Apr 23rd, 2008, 11:40pm Any ringing in his ears? If so, PM me. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by deltadarlin on Apr 24th, 2008, 8:36am From mainline health, "TIA symptoms occur abruptly and usually last less than 10 minutes, but they may persist for up to 24 hours. The effects differ depending on the location of the blockage. TIA symptoms are similar to those of a stroke and warrant immediate medical attention.". However, TIA is relatively rare in children. Anyway, we can *speculate* until the cows come home and not be any closer to an answer. Nor should we be, dx'ing over the internet is a sticky wicket at the least. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Tara Ann on Apr 24th, 2008, 9:11am on 04/23/08 at 18:43:03, Jackie wrote:
That was my first thought. I had one years ago. Weakness, lost sight for a bit, very difficult time talking, etc. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by brewcrew on Apr 24th, 2008, 10:01am I'm thinking this wasn't such a crisis after all. Scream "the sky is falling" and then don't show up to even say thanks for almost 17 hours? WTF? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by artonio7 on Apr 24th, 2008, 10:04am on 04/24/08 at 10:01:19, brewcrew wrote:
Maybe he/she was killed in a horrible accident. God forbid. with warm regards, Tony |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by Paul98 on Apr 24th, 2008, 10:41am on 04/23/08 at 17:55:53, purpleydog wrote:
Big difference! Don't want to scare people. The dye is not radioactive it blocks gamma rays and thus apperas opaique to the screen or film which the rays are projected on to. -P. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by vietvet2tours on Apr 24th, 2008, 1:38pm Nuther whack. Potter |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Jonny on Apr 24th, 2008, 8:24pm :-X |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Linda_Howell on Apr 24th, 2008, 9:06pm Quote:
You have 3 posts. Have you been here before under a different name maybe? It sounds as if you have by your reply. You said now we wait to see if he lives or dies or gets better. From what you said his symptoms were, it didn't sound as if he was in imminent danger of dying. Is that the case? because we certainly understand your frustration with Dr.s who can't give you a diagnosis much less an answer to that important question. All my thoughts and prayers are going out to this 13 yr. old tonight. I hope they have more answers for your family tomorrow. Linda |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by brewcrew on Apr 24th, 2008, 10:23pm on 04/24/08 at 20:20:45, Blue_Duck wrote:
I'm still trying to figure this one out: If everything you've stated is true, why would you waste your time coming here looking for help from non-medical personnel? Especially if this truly is a life and death situation? Don't you think that does your nephew a bit of a disservice? Color me stupid. And please do report me to the admins. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Charlotte on Apr 24th, 2008, 10:49pm Blue, please take a step back. Don't respond right now. Wait a bit. This is a support group, and a good one. The ways things are going right now, is not the right direction. We are not medical professionals, for the most part. We can't help with your nephew in that way. Charlotte |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by seasonalboomer on Apr 24th, 2008, 11:07pm this is one whacky thread. what the hell are you doing asking for medical advice that has nothing to do with CH on the internet for your "boy" - cousin. You've landed on the wrong planet. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by starlight on Apr 24th, 2008, 11:09pm Blue, With all respect, what does "falls off to the left side" mean in the list of descriptions? Does he sway to one side or actually fall over or something else? Is he on any prescriptions medications or painkillers that could be causing drowsiness? That is the first thing that came into my mind. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Annette on Apr 25th, 2008, 12:11am If none of the test showed anything wrong, its most likely psychological. Have they considered a condition called Conversion Disorder ? Is the boy under any stress ? Problems at school ? Breaking up with friends/ girl friends ? Problems at home ? Arguing with mother ? Not getting enough attention ? Other problems in the family ? Beside seeing the paediatrician, I recommend he gets to see a psychiatrist. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by nani on Apr 25th, 2008, 12:37am on 04/25/08 at 00:11:25, Annette wrote:
Really? For years, none of my tests showed anything wrong. It most certainly NOT psychological, rather, it was CH. I don't think this child has CH, but to make the assumption that it's psychological is irresponsible, IMO. Blue, I hope you get some answers soon. In the meantime, he's in my prayers. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Annette on Apr 25th, 2008, 12:57am on 04/25/08 at 00:37:20, nani wrote:
Yes, Nani, your tests were all normal but you had symptoms fitting the diagnosis of CH. It was only that the docs you saw initially did not know enough about CH to confirm it. At least you knew it was some form of headaches. As soon as you saw a knowledgable neurologist your symptoms would have confirmed CH. This boy's symptoms so far have not been explained by anything that were considered possible by the hospital staff. He was not just seen by an isolated doctor whose knowledge might be inadequate. He has been in hospital for several days and would have been seen by a team of specialists there. The poster said all the doctors are puzzled and would appreciate any suggestion. How does asking them if they had considered conversion disorder to be irresponsible? Now according to the poster, they are at wits end and are waiting to see if he dies, improves or changes in any way. When one gets to that stage, one needs to consider any and all possible explaination, regardless of how unlikely it might be. Psychological problems are very real for a lot of people, including yourself, otherwise you wouldnt be seeing a therapist and be on meds would you ? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by AussieBrian on Apr 25th, 2008, 1:05am No word back on the ringing ears, either. That would have narrowed the odds. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Charlie on Apr 25th, 2008, 1:20am I will never understand why we so quickly clobber new posters with such short-sighted comments. Just because he typed "this site" instead of "a site" might be a typo. Give him a break for a few days. :-/ Charlile |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by purpleydog on Apr 25th, 2008, 2:47am on 04/25/08 at 00:57:51, Annette wrote:
Annette, knock off the personal jabs towards nani. Just because someone posts something about themselves, is no reason to use it against them, and that is exactly what you are doing. So, knock it off. Maybe you have heard of the term "the pot calling the kettle black"? Also, this is a CH board, several of us have tried to help this person, however none of us are doctors, and none of us are qualified to even suggest a treatment, let alone what the diagnosis could be, or comment on anyone else's treatments for anything, that includes you. Back off. Stick to what you do in Australia, and stop arguing about this person's case here, by comparing what issues others may be having. That is extremely unprofessional (in your line of work, and it is your work, right?). Unless you'd like to travel here, and see this "patient". Then, you'd be bound by HIPPA laws, and couldn't say a word about it. That's if any hospital would take your credentials. Blue-Duck, I hope you get some answers soon. We have given you suggestions, however, this is an internet CH. board, and we can't diagnose your "boy's" problem here. I sincerely hope you find out what it is. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by LeLimey on Apr 25th, 2008, 3:06am And here we have it - on your marks, get set - GO Who will be the first to have the site shut down again? Have you learned NOTHING in the past week? |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by LeLimey on Apr 25th, 2008, 3:23am Blue Duck you are on a support website for CH. Whilst we understand and are well acquainted with CH, it's symptoms and it's treatments. We can give you the benefit of our personal experiences so you have a basis on which to start discussions with your doctors but beyond that, other than offering supportive comments, we can't help. Quite frankly, this IS the internet. It's not ER and none of us are Dr House. We cannot diagnose your's or anyone else's problems, we can only place suggestions from within the realm of our personal experience. You suffer from CH yourself as I understand it but you haven't come here looking for advice on CH. You have come looking for advice on a mystery illness which doesn't resemble CH as you have said yourself. If your doctors are puzzled then surely you wouldn't expect us to be any less so? It is a mistake to think you can find the answer to everything on the internet. If we could the Twin Towers would be standing and the world would be made of chocolate. You have said that you have an appointment with his paediatrician in a week and a neuro in two weeks. That tells me no one thinks this is urgent, ie it isn't life or death. I'm usually the last one to recommend a psychologist but given that in your first post you said his mother is neglectful this could be a subconcious cry for attention. I doubt it, but I wouldn't discount it when tests are showing nothing else. This however, is my opinion, as someone who suffers from CH and is in no way a medical professional. If I was in your shoes I would be looking at websites for stroke organisations seeing as how that is what this most closely resembles in my opinion and using those as a starting point and not a CH website. I wish you luck in your search for an answer, a speedy diagnosis and a return to full health for your cousin. Helen |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Racer1_NC on Apr 25th, 2008, 3:44am on 04/25/08 at 03:06:40, LeLimey wrote:
Ditto.... When the lights go out, I hope to God no one asks me...."why?". |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Blue_Duck on Apr 25th, 2008, 4:52am Please do not reply to this post anymore. Yes I have posted a lot on this site, that is why I know people with CH have had a lot of personal experience with a lot of stuff. I figured this is nuero, and you all know 90 percent of us have seen at least one neuro in our life times. I was lucky because I had just eye pain for several days, regular doc did all the tests in the book, finally they sent me to ER for torn retna. ER doc ran all the tests they could. Then like a smart ass he finally came in after several hours and said he wanted to try something. He had a nurse start an IV, brought in two other docs. Once the IV was in, a nurse was standing behind me, they numbed the eye to see if I had any other pain. Seconds latter I almost fell out of the chair because of the CH pain. The nurse hit me with an imitrex shot and here I am. I have always found support here. And I still am, but some of you need to take a trip to alaska and chill out. No ringing in ears, docs don't think it is life threatening but hey thats what said about a dear friend with broncoittis, she died at 3:26 in the morning! It was nice talking to everone. Latter! |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! PLS R Post by Annette on Apr 25th, 2008, 6:47am Firstly I apologise to Blue for posting on the thread again but I have nowhere else to say this. Secondly I apologise to everyone else who is sick and tired of this, believe me, I am even more sick and tired of this than you can imagine. I didnt start it but I would like a chance to explain myself. After being attacked repeatedly on this board for 2 years by the same people and in the past had always taken the high road to avoid further arguments I deserve the right to speak my mind once and for all. After this I will never again reply to any post made by Nani or PurpleyDog and will not answer any question or comment raised by the two. I do not believe anything that I posted here would warrant DJ to shut the place down or even close the thread. I did not put anyone down or defame anyone. I have never used bad language. I have always been polite and respectful. I have tried to take all personal issues with Nani and PurpleyDog to PM, it was them who refused to do so. I have only tried to explain myself or defend myself and please dont tell me I do not have a right to do so. I have walked away more often than not. Everyone here have seen clearly how Nani repeatedly picked on whatever I posted. Nani herself said in another thread that whenever she read my post she would imagine all sorts of disturbing things which seemed to give her an irresistable urge to make a personal attack. Well, that is not normal. No one else here has such an issue with my posts. I have actually PMed and asked most of the regular posters here if they could see anything wrong with how and what I posted and they all told me no. Its clear that whatever problem Nani has with me is actually in her own head. Just look at this incidence, I suggested considering psychological problem as a last possible resort. Everything else had apparently been checked out and now the doctors are grasping at straws. Blue came here asking for suggestion and in all fairness my suggestion was just as valid as anyone else's. Its entirely up to Blue to decide which one he would consider discussing with his doctors. PurpleyDog recommended MRI and EEG first up and that was fair. After we learnt that all the tests were normal and the doctors had given up on him then whats wrong with considering possible psychological issues ? If Nani said that it was irresponsible to suggest a psychological cause then it would be just as irresponsible to say it could not be. No one knows until its checked out. If Nani was simply disagreeing with me it would have been quite sufficient to say " I disagree , I dont think its psychological at all ". There was absolutely no need to for the personal attack on me "being irresponsible", that was totally uncalled for. In reply to PurpleyDog, I dont have to knock anything off. Nani took a jab at me first. If you dont want people to know something dont post it on a public board. I was not trying to put her down, I was reminding Nani that anyone can have/develop psychological problems during stressful time. I would like to remind you that Nani had used my husband's medical condition to attack me in the past. If I had any intention to put her down I could have said a lot more nasty things but I didnt, I stuck to the facts only. My post was respectful and polite. Furthermore it was Nani who compared her situation to the case first. She said that since her own test results were normal yet she had CH and not some other psychological problem then this person could not possibly have it and therefore should not even consider it , that was naive to say the least. You yourself has called me all sorts of things before and insisted that I have Munchausen. That wasnt making an online diagnosis ? Here several others suggested TIAs or a stroke or epilepsy as possible diagnosis, yet you only have problem with what I said. You told me I should not personally "attack" Nani then you proceeded to do exactly that. Isnt that hypocritical ? I think its you who should be thinking twice before calling someone else black kettle. Nani and PurpleDog claimed that they have no problem with me personally, only with what I posted. We all know that it is not true. If Helen or Barbara or George or anyone else had said the same thing, those two would not say a word. For eg here, Helen agreed with me that there could be some underlying psychological issue that would not hurt to get checked out, would Nani come back and tell Helen how irresponsible she is too ? Of course not. People have asked me to walk away every single time I got attacked for no good reason like this and I have obliged to try to keep peace. However, please stop and think for a moment what its like being at the receiving end, repeatedly , once every few weeks or so for nearly 2 years now, how would you take it ? I have considered leaving the board for good but I do not want to lose the fabulous friendships I have made here and I believe I do contribute positively to the Board. I refuse to be bullied off by anyone. I have discussed this problem extensively in PM with many people on this board and everyone ran out of idea on how to stop it. Walking away and trying to make peace had not worked, because the problem is not in me, the problem is in someone elses heads. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by KingOfPain on Apr 25th, 2008, 7:16am on 04/25/08 at 03:06:40, LeLimey wrote:
Obviously some haven't. :( I am adding this quote [below] because it relates to the situation at hand. on 04/23/08 at 00:24:28, Mrs Deej wrote:
Please stop the nonsense & personal attacks. Thank you. |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by mummymac on Apr 25th, 2008, 7:53am on 04/25/08 at 07:16:46, KingOfPain wrote:
I too will stand up and be counted, I am also fed up of the personal attacks as well. I can always assume that when Annette makes a post it will not be long before she is attacked. PLEASE NOTE I AM NOT TAKING SIDES, I do not know any of you BUT I AM CALLING A SPADE A SPADE. enough is enough is enough I do not know why as I have not been around for very long, Nor do I care about the history but I do care a bout this site. Should we be able to state our opinions - YES but attack personaly anyone -NO As quoted by Mrs DJ we must all be responisble for ourselves as well as stand up for what is right, we can all poilce the corridoors and stand up to and be counted |
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Title: Re: WE NEED HELP!! CRISIS!! DOCS PUZZLED!! P Post by seasonalboomer on Apr 25th, 2008, 8:01am on 04/25/08 at 07:53:08, mummymac wrote:
One's opinion is often too closely tied to one's identity (or one's "self") Since the internet only offers the opportunity to view the writings/thoughts/opinions, that's all you've very often got to go on here. So, differing opinions often mean the perception of personal attack. Strong opinions = ? |
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