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Thread: I must be going more insane

  1. #1

    I must be going more insane

    I need some advice. Hopefully you, Dr. Young, or someone on here can give me some idea of where to go from here that doesn't involve more of the same. My story of lack of true diagnosis is extending on to three years now.

    On March 13, 2004 I woke up in pain. I though I'd just thrown out my back, that had happened a couple of times in my past. I had to have help getting out of bed. I've not been normal since that day. After about a week, I realized something was very wrong, and my brother and husband carted me off to a very good chiropractor that I've been seeing since. X-rays showed some bone damage, and I had previously (almost 3 weeks prior) had an accident with a back extension machine in a gym. THe assumption was made that when I had that accident, I broke and damaged my spine - albeit not very badly. Not badly enough to cause the trouble I was having. Right after that, however, I got really sick. I was so sick that for a day or two I seriously wondered if I was going to die. I did recover, except only a day or two before I woke up unable to move.

    Things progressed, I developed a long list of symptoms, which included extreme loss of sensation and motor control in my lower half, from approximately the bottom of my ribs down, and constant falling down. I spent a year and a half going to doctor after doctor. I saw and ENT, two different GPs, an orthopaedic surgeon, rheumatologist, a local neurologist, and a neurologist in an MS clinic in Birmingham. I had MRIs, xrays, and test after test. No one knew.

    The local neuro said MS, the MS specialist shrugged and said he didn't know what it was, but he was pretty certain that at least at the time it wasn't MS. Not that it couldn't develop into it, but it wasn't then. The rheumy thought that celiac disease was probable (he was right to an extent, although I've been unable to have the biopsy to confirm, as going off a GF diet to try it made me so ill I was vomiting blood, thus I maintain a GF diet) although that for-life diet change didn't remove my symptoms. The orthopaedic surgeon suggestd I maintain use of a wheelchair because at that time I would randomly fall down after a sensation of "passing out" would happen at a specific part of my back - a sensation of blackness and darkness, except targeted in a specific part of my lower back, and then I'd loose all muscle control, all sense of balance, and I would crumble and hurt myself falling.

    I went through a completely humiliating and extraordinarily painful ADL evaluation, after which the physical therapist said things that were completely irrelevant to why I was there to see her. I was there because I can't FEEL half of my body 80% of the time, not because it doesn't work at all. "If she focuses, there is no limiting issues. If she's distracted, pain doesn't hamper her. Nothing is wrong." Miss the point much? What about the fact that unless I specicially focus on said limb, I cannot get my leg to rise up like you wanted?

    Eventually, about half a year ago, I walked out on all the doctors except the chiropractor. He's the only one who's been supportive through all of this. All the others shrugged and said "You're imagining things." or other equally degrading things like "You just need a psychologist to work out your depression issues, because there's nothing wrong with you." I protest highly. This sort of thing is demeaning, hurtful, and if I didn't have emotional or psychological issues prior to all of this, I sure as hell would afterward.

    And now, here I am, just a few days from my "3 year anniversary" of waking up like that, and I find I'm having symptoms return that I haven't had in a few months, as well as new ones.

    I can't see as well as I used to these days, I need new glasses. In addition to that I frequently get "spots" as though I have afterimages from looking at a red light for too long. A blueish green blotch appears in my vision and lingers for hours. I have a lingering smell of cigarette smoke for days at a time, and a dozen other issues.

    This has been lately affecting my life more and more. I've been able to work less and less. I have paperwork from the social security administration saying I qualify for a small amount, which would be extremely helpful, but first, I need a diagnosis, and the mere thought of seeing those hurtful and assinine doctors again just depresses and dismays me.

    What do I do now? Dr. Young, why are so many of your colleagues so eager to pass me off as a nutcase instead of actually finding out what's wrong?

    I've been three years unable to walk properly, sleep properly, and function like a normal person. I've been 2.5 years using a wheelchair for my own safety and because I'm no longer physically capable of walking more than about 200 feet (it used to be less, admittedly) without falling on my ass. I need to be diagnosed so I can get on with my life, and yet thanks to my treatment before, I would almost rather life with gradually changing, worsening and improving, and random symptoms for the rest of my life than go through that again.

    What can I do?

  2. #2
    Did anyone ever consider or mention transverse myelitis (TM) as possible diagnosis?

    Have you had a more recent MRI? It is not uncommon for someone with MS to initially have a "normal" MRI, but later in the disease to be found to have multiple classic MS lesions. Have you had a spinal tap with CSF analysis for myelin-specific immunoglobulins (IG banding)? This is not diagnostic for MS, but adds to the diagnosis, esp. in the presence of an abnormal MRI. A VER (visual evoked response) test would also be helpful since you have visual symptoms. These are rare in spinal cord disease or transverse myelitits, more common in MS.

    Contact your local MS Society for referral to a good neurologist and get some of these tests repeated.

    You will find a lot of other "limbo" possible-MS people over at the Braintalk forums MS discussion board, and this would be a good source of support for you: http://brain.hastypastry.net/forums/...play.php?f=195
    Even if later it is proven not to be MS, at least that would be the first thing to rule out at this time.

    (KLD)

  3. #3
    No, I haven't had additional MRIs, cat scans, or spinal taps. I'm without insurance, and cannot afford the cost of having them done at the moment either. I know the MS Society has a program to help people with that, and I'll check into that again.

    I went through the MS Society to see the doctor in Birmingham - the one who said he was fairly certain it wasn't MS. I might add he also didn't suggest I was imagining things, so I should see about seeing him again.

    No one has suggested TM to me before. I came across it here and researched it to see what it was, but other than that, nothing. I did ask my chiro about it and he said it would be an unusal case if it were, because of the other symptoms higher up. I do have the tell-tale banding and the cold feet that goes along with TM, but very little else to suggest that it would be TM.

  4. #4
    Senior Member keps's Avatar
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    Jeanette, I'm sorry I can't help. But I was curious about your visual problems. They sound very similar to the ones I had whilst being poisoned by carbon monoxide from a faulty gas fire (I also experienced strange smells/tastes).
    I understand that some people who are suffering from long-term low-level poisoning get diagnosed with MS, as sypmtoms can be similar.

    I know it's a long shot, but do all fuel-burning appliances in your home get serviced a minimum of once a year?

  5. #5
    Jeannette,

    I am not sure what is going on.

    Transverse myelitis (TM) is one possibility but you have a lot of other symptoms and the the fact that the symptoms seem to go away for some of the times (for example, you mentioned you can't feel your body 80% of the time...suggesting that you can feel 20% of the time) gives me pause because this should not happen with TM or MS. My guess is that your doctors are thinking that your symptoms are psychogenic and therefore are not aggressively pursing a neurologic diagnosis.

    You don't mention medication and I don't know what a GF diet is (please forgive me because I am just a spinal cord injury researcher). My first guess is that you had some kind of neurological problem that now has been complicated by a nutrition issue. A number of serious neurological problems arise from lack of a particular vitamin. A lack of vitamin B12, for example, can produce symptoms similar to what you describe.

    Wise.



    Quote Originally Posted by Jeannette
    I need some advice. Hopefully you, Dr. Young, or someone on here can give me some idea of where to go from here that doesn't involve more of the same. My story of lack of true diagnosis is extending on to three years now.

    On March 13, 2004 I woke up in pain. I though I'd just thrown out my back, that had happened a couple of times in my past. I had to have help getting out of bed. I've not been normal since that day. After about a week, I realized something was very wrong, and my brother and husband carted me off to a very good chiropractor that I've been seeing since. X-rays showed some bone damage, and I had previously (almost 3 weeks prior) had an accident with a back extension machine in a gym. THe assumption was made that when I had that accident, I broke and damaged my spine - albeit not very badly. Not badly enough to cause the trouble I was having. Right after that, however, I got really sick. I was so sick that for a day or two I seriously wondered if I was going to die. I did recover, except only a day or two before I woke up unable to move.

    Things progressed, I developed a long list of symptoms, which included extreme loss of sensation and motor control in my lower half, from approximately the bottom of my ribs down, and constant falling down. I spent a year and a half going to doctor after doctor. I saw and ENT, two different GPs, an orthopaedic surgeon, rheumatologist, a local neurologist, and a neurologist in an MS clinic in Birmingham. I had MRIs, xrays, and test after test. No one knew.

    The local neuro said MS, the MS specialist shrugged and said he didn't know what it was, but he was pretty certain that at least at the time it wasn't MS. Not that it couldn't develop into it, but it wasn't then. The rheumy thought that celiac disease was probable (he was right to an extent, although I've been unable to have the biopsy to confirm, as going off a GF diet to try it made me so ill I was vomiting blood, thus I maintain a GF diet) although that for-life diet change didn't remove my symptoms. The orthopaedic surgeon suggestd I maintain use of a wheelchair because at that time I would randomly fall down after a sensation of "passing out" would happen at a specific part of my back - a sensation of blackness and darkness, except targeted in a specific part of my lower back, and then I'd loose all muscle control, all sense of balance, and I would crumble and hurt myself falling.

    I went through a completely humiliating and extraordinarily painful ADL evaluation, after which the physical therapist said things that were completely irrelevant to why I was there to see her. I was there because I can't FEEL half of my body 80% of the time, not because it doesn't work at all. "If she focuses, there is no limiting issues. If she's distracted, pain doesn't hamper her. Nothing is wrong." Miss the point much? What about the fact that unless I specicially focus on said limb, I cannot get my leg to rise up like you wanted?

    Eventually, about half a year ago, I walked out on all the doctors except the chiropractor. He's the only one who's been supportive through all of this. All the others shrugged and said "You're imagining things." or other equally degrading things like "You just need a psychologist to work out your depression issues, because there's nothing wrong with you." I protest highly. This sort of thing is demeaning, hurtful, and if I didn't have emotional or psychological issues prior to all of this, I sure as hell would afterward.

    And now, here I am, just a few days from my "3 year anniversary" of waking up like that, and I find I'm having symptoms return that I haven't had in a few months, as well as new ones.

    I can't see as well as I used to these days, I need new glasses. In addition to that I frequently get "spots" as though I have afterimages from looking at a red light for too long. A blueish green blotch appears in my vision and lingers for hours. I have a lingering smell of cigarette smoke for days at a time, and a dozen other issues.

    This has been lately affecting my life more and more. I've been able to work less and less. I have paperwork from the social security administration saying I qualify for a small amount, which would be extremely helpful, but first, I need a diagnosis, and the mere thought of seeing those hurtful and assinine doctors again just depresses and dismays me.

    What do I do now? Dr. Young, why are so many of your colleagues so eager to pass me off as a nutcase instead of actually finding out what's wrong?

    I've been three years unable to walk properly, sleep properly, and function like a normal person. I've been 2.5 years using a wheelchair for my own safety and because I'm no longer physically capable of walking more than about 200 feet (it used to be less, admittedly) without falling on my ass. I need to be diagnosed so I can get on with my life, and yet thanks to my treatment before, I would almost rather life with gradually changing, worsening and improving, and random symptoms for the rest of my life than go through that again.

    What can I do?

  6. #6
    Quote Originally Posted by keps
    Jeanette, I'm sorry I can't help. But I was curious about your visual problems. They sound very similar to the ones I had whilst being poisoned by carbon monoxide from a faulty gas fire (I also experienced strange smells/tastes).
    I understand that some people who are suffering from long-term low-level poisoning get diagnosed with MS, as sypmtoms can be similar.

    I know it's a long shot, but do all fuel-burning appliances in your home get serviced a minimum of once a year?
    That'd be an excellant thing to check out - but we are full electric here, and there's no burning anythings anywhere.

    I do have the gluten intolerance issue which I'll explain more in my reply below which may be exacerbating some issue.

  7. #7
    Quote Originally Posted by Wise Young
    Jeannette,

    I am not sure what is going on.

    Transverse myelitis (TM) is one possibility but you have a lot of other symptoms and the the fact that the symptoms seem to go away for some of the times (for example, you mentioned you can't feel your body 80% of the time...suggesting that you can feel 20% of the time) gives me pause because this should not happen with TM or MS.
    This is correct, especially with the olfactory oddness. I cannot accurately map when the symptoms appear and dissappear, but there is a bit of a pattern to it. First thing in the morning, things seem to be more or less ok. As long as I've slept relatively well, and enough, I will be stiff and have mild lower back pain through the morning. I can walk around (well, limp around anyway) but not for very long. If I walk/limp/hobble more than about 100, maybe 200 feet, I get this sensation in my lower back (around L2) that I can only describe as the sensation of passing out, except it's targeted there. That has become my "sit down NOW!!" trigger. If I don't sit down at that point, I will rapidly loose motor control and sensation, and most likely will not make it to a place to sit down before I have fallen. This is the main reason I use a wheelchair now.

    Additionally there's a constant weakness in my leg muscles. I cannot lift my leg (in a sitting position) upward from the hip against pressure. I can lift it, I have full flexibility and as much strength in my calves, ankles and feet as ever, but that odd lack in upward pressure from the hip flexors.

    Blood work always shows inflamation present, and has for the three years I've been repeatedly tested. No one knows why. If I place ice on varied parts of my spine during these symptom flare ups SOMETIMES they go away. Sometimes they do not. Ice doesn't worsen anything, though.

    I'm easily fatigued (and was told that I had fibromyalgia by the rheumatologist) and exertion today will cause me high levels of pain and more symptom flare-ups tomorrow.

    My guess is that your doctors are thinking that your symptoms are psychogenic and therefore are not aggressively pursing a neurologic diagnosis.
    That pretty much seems to be the case - although the doctors I've seen have been far more eager to automatically assume such before even bothering to look at neurologic issues. My GP was ready to write me off as a (using his words here) "basket case imagining things".

    You don't mention medication and I don't know what a GF diet is (please forgive me because I am just a spinal cord injury researcher). My first guess is that you had some kind of neurological problem that now has been complicated by a nutrition issue.
    GF = Gluten Free; I've been determined to have a serious reaction to gluten (the protein in wheat, rye and barley) and while going GF has produced a significant reduction in symptoms, staying GF for over a year has returned some stamina and helped with what was labelled as fibromyalgia, it has done little to help with the bulk of the problem. The rheumatologist stated that while most gluten sensitivities (from wheat allergies, to gluten allergies to celiac disease) is often present from childhood, it can be triggered by any traumatic injury, viral infection, or other medical issue that could have cropped up.

    A number of serious neurological problems arise from lack of a particular vitamin. A lack of vitamin B12, for example, can produce symptoms similar to what you describe.

    Wise.
    I've been checked for B12, folate and K deficiencies, which showed nothing out of the ordinary, as that was one of the things my neurologist thought of as well. Do such deficiencies vary enough by the day that I might register as normal on one day even if I were deficient?

    I have a list of my symptoms that I maintained for my doctors, I'll post it in a followup. Perhaps a more detailed picture will give you more ideas too.

    Thank you so much for taking the time to respond all of you. Your input is HIGHLY valued.

  8. #8
    This list was originally compiled in 2005, my notes for recent changes are inside ** ** notations.

    Joint pain (stiffness, pain, occasional swelling, limited range of motion) in the following places: hips, knees, lower back and middle back. Occasionally ankles hurt but are never limited in range of motion. wrists and fingers get stiff and numb, sometimes tingly as if they have just been asleep and have the "pins and needles" effect. right arm, elbow and shoulder frequently hurt when I wake up, despite sleeping on my left.

    Stiffness is more frequent when I first wake up, pain levels are higher after walking for more than 2-3 minutes or standing for 5. Pain levels subside quite a bit during the day but spike dramatically after various activities most of which include walking, standing, any bending at the waist or hips. Changes in pressure, humidity and temperature make stiffness, weakness and pain levels increase.

    After standing or walking for a few minutes (2-3) I get an odd sensation in the small of my back that now translates to "sit down or fall down". If I sit as soon as I can after getting this feeling, I don't usually fall, and the sensation fades and I return to more or less "normal" enough to resume walking to where I was going. The sensation can only be described in one of two ways. "Black" which lends itself to synesthesia. The second way is akin to the sensation one gets prior to passing out, the feeling of everything "going grey around the edges". It feels as though that part of my back has just or is about to pass out.
    ** the length of time I can walk around is a bit longer now. If I maintain motion, I can handle up to 5 or 8 minutes walking now, which at my usual gait is about 100 maybe as much as 200 feet. Using forearm crutches I can sometimes extend this if I pause to rest by leaning on the sticks.**

    Extreme weakness, especially in the hips and upper legs, worsened by walking, leg lifts, or stairs. The more I use those parts of my legs, the weaker they seem to become. Some days and times the weakness is worse than others, leading to days wherein standing up is an extreme task I cannot accomplish without the assistance of a wall-mounted bar or someone to pull myself up on, and walking more than 5 steps is an effort that is exhausting and requires sitting down immediately, lest I fall.
    ** more than about 50 feet, unaided**

    I've had migraines from the time I was 15, complete with aura. Symptoms include synaesthesia, nausea, (occasional) tinnitus, visual distortions (stars, color variations that are vastly incorrect), photosensitivity, vertigo, hypersensitivity of skin especially around my neck, head, and underside of forearms. Headaches last anywhere from 4-5 hours to 5 days. On one occasion there was a single extremely violent stab of pain accompanied by color distortion, extreme nausea and vertigo. There was no aura, and it all faded away completely within 2 minutes.
    ** these dissappeared completely when I begain maintaining a gluten-free diet full time**

    Sudden fits of dizziness or light-headedness, accompanied by nausea sometimes (doesn't seem related to getting up or sitting down; can happen while lying down or up and moving about)

    Fatigue (some days I can sleep 12 - 15 hours and still be exhausted and go back to sleep)

    Feet and lower legs extremely sensitive to cold - the slightest chill will make them go icy esp. while sitting. Layered socks seem to help, space heaters don't.
    ** This has worsened so much. I often spend days wearing shorts and tank tops, and being too hot yet, yet my lower calves and feet are swaddled in layered socks, booties, legwarmers, and anything I can bundle on, and my feet still feel as though I've left them in a bucket of water which froze over. They do not feel cold to the touch to me or anyone else, yet warm water HURTS as though it were boiling, and warmth in them doesn't return for days **

    Night sweats, hot flashes, cold flashes.

    Cramps (calves, hamstrings, across hips, along spine in lower back (connecting muscles between lower ribs and tops of hips), along sides of back to shoulder blades.

    Twinges of pain or feeling of being jabbed really hard with a needle in mid-back and lumbar region, right along spine, both shoulders, and occasionally both elbows.

    Generalized aching in hips, lower back, middle back, knees (both, but especially right)

    "tingling" electrical sensation along neck and back of head when leaning forward

    Sensation of "being cut off" at the lower back when leaning over at the waist or bending way forward, as if all sensation has ceased below the waist.

    occasional metallic taste in the back of throat

    There is a "back screaming" sensation when I lay down at night. While it is normal for your back muscles to hurt a bit when you lay down to relax, the abnormality is that when it happens for me it's excruciatingly painful. It feels like hot knives, stabbing pain, pins and needles, needles in my skin, as if I'm being touched in alternating spots with something really really hot (like boiling water) and ice all at once. It takes my breath away, it makes my feet tingle numb, my skin gets extra sensitive, and I often cry out and gasp for air while it's happening. t takes 5 minutes, sometimes as much as 10 for it to fade into "controllable" levels where I can breathe normally, but the pain in my back continues for another 30 minutes or on up to an hour.

    Irritable Bowel, complete with my stomach choosing to evict what I just ate an hour before in some occasions, but never in a way that includes vomiting. Probably completely unrelated as it started in 2001 when we returned from living in the Caribbean.
    ** no longer an issue while I maintain a gluten free diet**

    Despite never having a problem with them in the past, my sensitivity to onions has increased to the point where I can no longer cut them without my eyes involuntarily squeezing shut and watering really badly, and loosing my breath. (Jul 20 05)
    ** this also faded in extremity after going on and maintaining a gluten free diet **

    I can no longer stand certain sensations - like emory boards on my nails. At various times other sensations randomly cause this problem, and fades away within a day or two. When I feel these things, it feels like someone is running dry squeaky paper towels across my teeth, and I shiver and cringe away. Really horrid feeling. Wet towels fresh out of the washer caused this once, as did a pair of cotton socks once. (Jul 20 05)

    Lately the "nervous weakness" from laugher has increased. It no longer requires me to laugh really hard before I get weak in the legs and stagger, stumble, or fall. (Jul 20 05)

    Hypersensitive skin - Sometimes my skin gets really really sensitive to the point where the lightest touch of anything, including the hair growing out of the same area will itch. If I scratch, no matter how hard or soft, I get huge welts as if I've been trying to tear my skin off with my finger nails, even though I only scratched very lightly. (Aug 03 05)

    Sudden onset of constant smell of cigarette smoke, started suddenly, present for weeks afterward, along with threats of a headache not strong enough to really be considered a migraine. After an episode of being exposed to smoke in a restraunt for about 30 minutes, I was unable to pick up any other scent without it being immediately overpowered by the smell of cigarette smoke. I gave everyone else headaches by burning candles, incense, spraying fabric cleaners, lysol and deodorizers, but nothing changed the smell for me, and no one else could detect it. (Aug 30 05)

    The cigarette smoke issue has now happened three times, and a fourth possible time with a different smell that I can't recall at the moment, but only lasted about two days unlike the week the smoke lasted the last two times, or the two weeks it lasted the first time. (Nov 15 05)

    Muscle spasms, isolated in the top outer thigh of my right leg. Occasionally the muscles that seem to connect the back of my ribs with the top of my hips. No discernible rhyme or reason to the cause of it. Happening for about two months now. (December 1, 2005)
    ** this has lessened in intensity but increased in frequency, both legs twitch fairly frquently, but not the sort of spasms that most people associate with "spasticity**

    The sacral area of my back will often begin hurting, the worse it is the harder it is for my legs to function properly, leaving me weak-kneed and unable to stand and walk for long if at all. The worst of it leaves me without light tactile sensation except for harder presses, and on occasion not even that. Mostly the loss of sensation is around my feet, but seems to sprinkle randomly throughout every place of notable sensation from hips downward. The worse this problem is, the more unable I am to function normally. The higher the pain levels, the less time I am able to stand, stand upright or walk. There is a second sensation that isn't pain, but can only be described as feeling as though the area is disconnected that when in effect causes other worse problems. Standing produces dizziness, disorientation, hot flashes, faintness and (infrequent) nausea. Sitting or lying produces an extreme restlessness and an extreme desire to whimper as if I am in pain, despite not being able to actually discern pain from the area, faint feelings, and hot flashes. I accidentally discovered a temporary alleviation (which doesn't always work) can be had by popping the area by twisting fairly quickly into a certain position after laying on my back with my legs propped on cushions in a classic sitting position for a while. It's a 30 minute process at the least. I make liberal use of it. (Dec 13 2005)
    ** and still do, I use this every night. It helps a lot. If I dont' do it, I am in far worse condition the next day*

    ---

    and the recent addition is visual

    I have been getting the "afterimages" as if there were a red light in my eyes for a while, hoovering in my vision and staying present for hours. No hallucinations that I'm able to determine, just the apparent afterimage. As far as I remember the times this has happened there was no long exposure to light, though.

    Until I read about TM on the board here, I never thought that the "banding" around my waist may be a symptom. I have two spots, where it feels as though a cord is. I don't believe it's sensitive to the touch, it's a fairly mild sensation. It feels as though there's a cord there, but not pulled incredibly tight, more like a well-fitting bracelet or watch grips your wrist. The area does hurt sometimes when I stretch. The first one wraps around my body at about L1 and the second one lower, around L4 or L5. Right above and below my stomach.
    ---

    Again, sorry for the giant wall of text - but thank you so much for reading and pondering on me. I know my symptoms and issues are unusual, and I know I don't fit the classic cases of ... well.. anything. But I also know something is very very wrong.

  9. #9
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    Have you been tested for lead or other toxic chemical poisoning?

    http://www.niehs.nih.gov/oc/factsheets/pdf/lead.pdf

    Or maybe some sort of drug/chemical poisoning. I dont mean to offend but have you done any kind of drugs in the past like acid or meth that could build up in the system after exposure. I am sorry I am definately not accusing you as I dont know you but what you describe is horrible.....

    I am so sorry you are experiencing this....(((((hugs)))))

    Just a thought.....
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  10. #10
    I don't know much but your description of fatigue made me wonder about Lyme's disease, or West Nile. My friend has West Nile and Epstein barr and so much is off with him now that changes constantly. It is really frustrating for him.

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