My Story (Very long, but meant to help)

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Postby whataprettyworld on November 15th, 2007, 11:47 am

j7m wrote:Nancy,

I agree with you. Medical doctors may understand the nuts and bolts of the body, but they have very little understanding of the engine - we just haven't gotten there yet. I mean no disrespect to any MD's in this statement

Angie,

I appreciate all the information, and your posts and links are ones that I always read through. The fact of the matter here though is that everyone on this board at one time did not have this syndrome. There was a tipping point - something that happened in our body that through it out of whack. This is true whether it is autoimmune, hormonal, anxiety, etc. If we all look back to the origin of our twitches/pain/and all these other BFS BS, I'm sure we can all speculate on the triggers; whether they be from antibiotics, anxiety, viral and so forth. The reason I really favored kevintwisters post is that he had success in treating his symptoms without medicine - a process new twitchers may find helpful.

Anxiety reeks havoc on the limbic system (hypothalamus, hippocampus, etc), which among many things controls adrenaline, body temp, emotions, memory, and links the nervous system with the endocrine system. Not to get to technical here, but it controls and regulates the sympathetic nervous system, which starts in the spinal cord and travels to a variety of areas of the body. Its function prepares the body for the kinds of vigorous activities associated with “fight or flight,” and activation of the sympathetic nervous system has the following effects:

dilates the pupils
stimulates the sweat glands
dilates the blood vessels in large muscles
constricts the blood vessels in the rest of the body
increases the heart rate
opens up the bronchial tubes of the lungs
inhibits the secretions in the digestive system
shuts down the immune system

In the good ole days of running away from the saber tooth or attacking a giant sloth, this fight or flight alert in our bodies lasted a brief period of time - its purpose was very limited...to get our behinds out of a tough spot. Evolution hasn't had the chance yet to adjust our brains response to todays ongoing pace and continuing stress. So our bodies stay in this heightened level of anxiety and getting the body back to homeostatis or status quo gets a little tougher. Isn't it possible then that stress could even induce an auto-immune illness?

Again Angie, I find your posts very informative, but I think the newbies on the board should address the anxiety possibility first.



Yeah, I think I totally agree on that point. I stumbled on this forum by chance and whilst I take a lot of useful info and more importantly (for me) encouragement and understanding I do wonder if this is the right place for me.

Whilst I tick all the BFS boxes I cannot but feel my issues relate more to underlying anxiety…..like many who have been dx with BFS I also fear MS and MND etc but I imagine this would apply to a lot of people who experience these sensations. I know for a fact I suffer from Health Anxiety and reading some posts on here it is glaringly obvious that other people on here do.

Many GPs and therapists deal with people on a regular basis who have convinced themselves they are suffering from a progressive neurological disease due to the nature of their symptoms but no organic reason is ever found…..now, I imagine some of these will be BFS some will be anxiety and others will be whatever somatic disorders. In my opinion, the one thing all these things have in common is that they place the CNS under enormous pressure and this then plays havoc with the sufferers interpretation of the symptoms produced.

I cannot but help but think that people are scared and confused by an anxiety explanation…what is anxiety? I’m not anxious? how can anxiety do this? I’m being fobbed off etc etc! This was my worry and this is what led me here….the thing is, when I look at it with cold hard logic and also taking into account how my frazzled mind is working I cannot but help think that I was after something more ‘concrete’ than the anxiety explanation. Thinking I have BFS makes me think great, I cannot have MS, I have BFS which seems far more concrete and realistic than just saying anxiety. This does not belittle the crippling effect BFS has on people but rather it is about the idea that people naturally want a somewhat definite explanation of their symptoms.

To be honest, I think the more proactive people are in searching out a diagnosis that makes sense to them the better. It is of course a dangerous game flitting from forum to forum but if you are clever and sift the useful information from the heresay and rubbish you can read it can help you to build up a concise picture of how you may have got to where you are. Of course, I’m sure the majority of people on here would be suffering from BFS and this is a marvellous and uplifting forum for them but it would be a shame to think that people may have latched onto something and not considered all the options
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Postby Jennhaz on November 15th, 2007, 12:38 pm

I am not afraid or confused over a anxiety explanation....darn - I wish that is what it was. You say that you have health anxiety over MS and MND, well of course because you have these symptoms then you start to have the anxiety from it.

I am going to say this and not because I am trying to be mean and crush the hopes of others but because I think we need to stop falling into the so called trap that the Dr.'s give us, which is no explanation, we dont know why, blah, blah, blah and maybe start pushing for research on BFS instead of saying there is nothing wrong because all tests are normal so that only concludes that it is psychosomatic. And speaking of psychosomatic, how come we can never talk or think ourselves out of diseases but we can put ourselves in them, that always has me wondering.

So back to saying what I wanted to say....* I think", the only reason we want to think it is anxiety - is because we are all so scared sh**tless that something is really wrong with us! Is that ok, sureeee. If it helps you get through BFS, great! I know I would love to hear for a fact that it is anxiety.

However, I know all of my long list of symptoms anxiety would not create, something is wrong. I am just happy it is benign. I know some of you are going to be upset with what I say here in this next sentence, but this is how I feel...I think if someone twitches from anxiety and their twitches go away then they never had BFS. I think for the people that have anxiety twitches and other symptoms of anxiety, then it is not nothing that someone with true BFS goes through.

I think the real reason I get so upset over this conversation is because I spent a long time just trying to convince Dr.'s to do tests on me, instead they threw me in the mental ward because they said my symptoms were to extreme and strange to be really happening and they thought I was losing it. So here I am in a mental ward dealing with really strong symptoms of BFS and having everyone tell me that it was in my head. So I get upset and feel that everyone here is letting these Dr.'s label us as nutcases instead of getting down to the medical facts of why our bodies are doing this. Jenn
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Postby kevintwister on November 15th, 2007, 12:50 pm

Jennhaz wrote:I am knocking what is said to be anxiety as the cause.

Kevin, I am glad that this is helping you, but it has not cured you, and I surely hope it does cure you. "I" think it has calmed you down which has calmed your BFS down. And no, I do not think you are a liar or a con like Tui mentions. I do believe it has helped you just like anyone with BFS when their anxiety calms. I just have a different opinion but I am still here cheering you on, what works for you, works..Jenn


My gawd, I should have never come back here and really NEED to go away as I promised yesterday however how I can I let replies like this go?

Anxiety WAS the cause. There was no hidden disease just waiting to pop out. Before I started with the twitching crap I had a TON of stress in my life. I also had a few panic attacks before also. (I had one in a plane that lasted 9 hours a month or 2 before).

So I now have no symptoms however I am not cured? Reading statements like this would have launched me back into my condition as little as 6 months ago. However I know better now. Though, technically I guess your right because I never had an illness to be cured from. I had a symptom, actually I had a lot of symptoms. You're also right that it never REALLY goes away because the potential is always there for it to resurface. If I go back to my old habits I KNOW it would come back.

If it makes some of you feel better I could rewrite my story a bit in terms you might understand. OK, I had a LOT of syndromes that are now in remission because I worked hard on strategies to reduce stress, anxious thinking, worry, obsessive thinking, etc.

Here is a list of my syndromes that are now in remission.

BFS (we all know that one)
BCS (we all know that one too)
ESS (Electric Shock Syndrome) <--glad that one is in remission, I hated those shock feelings that would jolt me awake out of sleep.
FLIWGCS (Felt Like I Was Going Crazy Syndrome)
OTS (Obessive Thinking Syndrome) <-this disease causes you to obsess over your other syndromes daily.
KWUE2HS (Keep Waking Up Every 2 Hours Syndrome) <---this one still comes and goes so is not in full remission yet.
CTS (Carpal Tunnel Syndrome) <--at the height of my AS (Anxiety Syndrome) my hands hurt alot when on the PC.
CES (Can't Exercise Syndrome) <-- I felt like I was beat up after any bit of exercising. This syndrome also made my BFS and BCS worse. Glad that one is in remission. I can now do the elliptical for an hour a day with no problems.
ASRAS (Always Seeking Reassurance Syndrome) <--this one leads to the next syndrome.
CSOHRWS (Can't Stay Off Health Related Websites Syndrome) <--I guess this one shouldn't be on the list since it is no longer in remission. I just reactivated it by just trying to help some folks.
TCBAIHTBSUDS (This Can't Be Anxiety It Has To Be Some Undetected Disease Syndrome) <--Believe it or not, I had that one too. Fortunately that one IS now in remission. If it wasn't none of the above would be in remission and I would still be suffering greatly.

The honest to gawd truth folks is we ALL have BFS. Actually everyone has BFS. Jenn is right, it's always in us. All we have to do is start worrying a little more, have a lot of stress build up in our lives, have a real traumatic event in our lives, get some kind of illness that stresses our body, go through surgury, have a bad drug reaction, allergy, lose a loved one in death, lose your job, lose your house, go through a divorce, have a baby, this list can go on for miles. Any of those things can potentially bring it out in us.

However, most normal people choose to be like my wife (who just lost her mother to cancer). She started twitching in several places, started getting burning, etc. However she didn't go and google or even give it a second thought because she knew what was causing it. She had been stressed out to the max. It went away within a month.

Or someone with an anxious personality type like I had can start freaking out about it, google "muscle twitching", be scared of what is "really" causing it, obsess over it daily and continue to have it for a lifetime. The choice is truly there. The evidence IS there believe it or not.
Last edited by kevintwister on November 15th, 2007, 12:59 pm, edited 1 time in total.
Former BFSer, here to help. BFSymptoms (not a syndrome) are symptoms of nervous system overstimulation. Got my life back thanks to those fine folks at anxietycentre.com whom taught everything I know about this condition.
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Postby Angie on November 15th, 2007, 12:58 pm

Appreciate the replies, but I think the newbies should all go to their respective neurologists ans see if their symptoms correspond with documented cases of BFS/BCFS/PNH so that they can get their symptoms treated (hopefully). This will lessen their anxiety because their symptoms will diminish if they have these conditions. I guess we may have to agree to disagree, but that's what helped me and what may help someone else who is just dealing with this condition. By the way, autoimmune conditions can go into remission- fyi.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Jennhaz on November 15th, 2007, 1:10 pm

Kevin,

I dont feel what I wrote, what you quoted was terrible. As you said, you can't let responses like this go, however I am the same.to this post. As I said, if it works for you great but it is just my opinion that I do not think anxiety is the cause.

Best wishes,
Jenn
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Postby whataprettyworld on November 15th, 2007, 1:12 pm

Jennhaz wrote:I am not afraid or confused over a anxiety explanation....darn - I wish that is what it was. You say that you have health anxiety over MS and MND, well of course because you have these symptoms then you start to have the anxiety from it.

I am going to say this and not because I am trying to be mean and crush the hopes of others but because I think we need to stop falling into the so called trap that the Dr.'s give us, which is no explanation, we dont know why, blah, blah, blah and maybe start pushing for research on BFS instead of saying there is nothing wrong because all tests are normal so that only concludes that it is psychosomatic. And speaking of psychosomatic, how come we can never talk or think ourselves out of diseases but we can put ourselves in them, that always has me wondering.

So back to saying what I wanted to say....* I think", the only reason we want to think it is anxiety - is because we are all so scared sh**tless that something is really wrong with us! Is that ok, sureeee. If it helps you get through BFS, great! I know I would love to hear for a fact that it is anxiety.

However, I know all of my long list of symptoms anxiety would not create, something is wrong. I am just happy it is benign. I know some of you are going to be upset with what I say here in this next sentence, but this is how I feel...I think if someone twitches from anxiety and their twitches go away then they never had BFS. I think for the people that have anxiety twitches and other symptoms of anxiety, then it is not nothing that someone with true BFS goes through.

I think the real reason I get so upset over this conversation is because I spent a long time just trying to convince Dr.'s to do tests on me, instead they threw me in the mental ward because they said my symptoms were to extreme and strange to be really happening and they thought I was losing it. So here I am in a mental ward dealing with really strong symptoms of BFS and having everyone tell me that it was in my head. So I get upset and feel that everyone here is letting these Dr.'s label us as nutcases instead of getting down to the medical facts of why our bodies are doing this. Jenn



That is so wrong.

It is common knowledge that even with advanced cancers etc the chance of survival etc is vastly increased dependant on the frame of mind that the sufferer views the disease.

I would like to add there are also documented stories of people who are able to perform almost superhuman feats whilst in a stressed state...ie women lifting a car with a child trapped inside etc...adenalin can cause all sorts of effects on our body. Take an athlete, many of them will say that the difference between winning and losing in mental and the correct mental preperation.

The mind can have untold effects on the body....some good and some bad.

I really feel that this debate is intersting but cannot but help feel that the BFS dx people seem to want to fight their corner as if the credibility of the condition is as stake. I don't feel that the comments here are attacking BFS but are merely looking at an overall picture.

You also state that Dr's should attempt to provide us with a medical explanation of why we are experiencing the sensations we do.....I think that the anxiety explanation once understood does provide this.
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Postby stevepaul on November 15th, 2007, 1:18 pm

I've been here for 3 years now and as far as I'm aware no-one has left here cured. You'll hear people say "greatly improved" but not cured.
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Postby Jennhaz on November 15th, 2007, 1:27 pm

I dont think my post is wrong at all and I still stand by it!!!!!


ANyway, maybe what we need on this board is a topic for people to talk about anxiety as the cause, Gary?
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Postby kevintwister on November 15th, 2007, 1:32 pm

stevepaul wrote:I've been here for 3 years now and as far as I'm aware no-one has left here cured. You'll hear people say "greatly improved" but not cured.


I guess you didn't read my post or are not giving me any credibility because I didn't come back with some miracle cure for the mystery disease many of you are searching for. I didn't leave here "cured", I came back "cured". Though I don't like the word cured because it is implying that I had some sort of disease. If I would have stayed reading this website daily I wouldn't be any better. I KNOW that. I would still be obsessing over this thing.

Also, unless someone is coming back to help like me, why would they come back here if they are no longer twitching? Someone doesn't go from obsessing over their symptoms (visiting sites like this) to no twitching over night. Generally, they have to stop that habit first. Though I do remember reading a post here over a year ago of a lady that said her twitching stopped after she stopped thinking about it.
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Postby whataprettyworld on November 15th, 2007, 1:35 pm

Jennhaz wrote:I dont think my post is wrong at all and I still stand by it!!!!!


ANyway, maybe what we need on this board is a topic for people to talk about anxiety as the cause, Gary?


I wan't really saying your post was wrong but I do take issue with the point you made about only being able to somatise a disease negativly. There is loads of evidence to suggest that how a patient views an organic disease influences the effect it has on the body.
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Postby kevintwister on November 15th, 2007, 1:41 pm

Jennhaz wrote:I dont think my post is wrong at all and I still stand by it!!!!!


Jenn, I apologize if I reacted to your post in the wrong way. Where your post is wrong is that you are telling people that anxiety can not be the cause of this twitching issue. Anxiety/stress is the #1 cause of twitching. Most doctors know that, most people that have ever had any amount of stress in their lives know that. Why do you think most doctors are telling everyone here that they have anxiety issues? Anxiety is a real, physical problem. It's not a phantom condition that is in "your head" as you mentioned. Anxiety symptoms are REAL. I lived them for over a year. No, actually I have had them most of my life now that I think about it.

You can feel that there is an autoimmune problem that causes this too. I am not trying to argue that. However don't be making statements that anxiety can't cause this because it can, most doctors know that to and when anxious personality types read statements like that you are going to make them worse. That's all I am trying to say.
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Postby Angie on November 15th, 2007, 2:12 pm

According to my psychologist, anxiety can cause an eye twitch or something small of that sort. Not the buzzing, muscle stiffness, widespread twitching, exercise intolerance and fatigue people who have this medical condition experience. Go to an anxiety site Kevin if you want to help people who have only anxiety problems. My neurologist, and many other neurolgogists, scientists and medical professionals, know that most cases of BFS are amedical problem with many known medical causes. Until you can come up with some real, irrefutable scientific evidence that anxiety can cause all of these things, I think this conversation should be considered over, since you are doing a disservice to the people here with a real medical condition, in my opinion.
Last edited by Angie on November 15th, 2007, 9:20 pm, edited 1 time in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Jennhaz on November 15th, 2007, 2:17 pm

Whataprettyworld,
First off you are the one that just made this a newbie vs. BFS dx competition. Noone ever said that here.....
I just read your post again and I really do not like your comment how us BFS dx people seem to want to fight their corner as if the credibility of the condition is at stake. YOu are dang right it is at stake. I had to fight through tons of Dr.'s to get a true dx instead of the others telling me it was in my head. Many of us on here have been through hell in back to get that dx and not the dx that it was in our heads.

You say that our sensations might be explained by anxiety once understood??? I do understand what you are saying and have heard probably alot more from my counselors, and was made to read up on it, but nooo I still do not see the link compared to MY symptoms.

Like I said in the beginning of this debate, to each its own, whatever helps you, I am just giving my opinion. I stated all throughout my posts that this is just my opinion or I posted *I think*.

I do really think we need to have a topic for people to go on to read up on the anxiety cause, maybe that would help...Jenn
Jesus bore my sickness and carried my pain. Therefore I give no place to sickness or pain. For God sent His Word and healed me. (Ps.107:20)

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Postby Jennhaz on November 15th, 2007, 2:23 pm

Kevin,

Honestly, I am very happy for you, I really am. Of course I dont want someone to go through this.

I do however have to state my opinion and when you say a lady came back and said since she doesnt think about her twitching they stopped, all I can say to you because this is what *I believe* is that she did not have BFS then. I have had this for two years, and I was doing great, I never thought about them, I could of cared less, but they didnt go away and they never will. I am sorry if that bothers people to tell them that no their twitches wont go away but it never has happend with someone with BFS, true PNH...Jenn
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Postby kevintwister on November 15th, 2007, 2:39 pm

alive and twitching wrote:According to my psychologist, anxiety can cause an eye twitch or something small of that sort. Not the buzzing, muscle stiffness, widespread twitching, exercise intolerance and fatigue people who have this medical condition experience. Go to an anxiety site Kevin if you want to help people who have only anxiety problems. My neurologist, and many other neurolgogists, scientists and medical professionals, know that most cases of BFS is a medical problem with many known medical causes. Until you can come up with some real, irrefutable scientific evidence that anxiety can cause all of these things, I think this conversation should be considered over, since you are doing a disservice to the people here with a real medical condition, in my opinion.


I'm sorry Alive and Twitching but you're wrong. I had ALL of those things. EVERY one of things is so common with anxiety Your psychologist is wrong and did YOU a great disservice by telling you that.

Speaking of anxiety sites, you want to see some quotes from the Anxiety Centre forum board? These symptoms are like a broken record in there.

Posted by tanya 10/14 ... This is really starting to freak me out. It started with cramp like feelings in my calves which has improved a bit over the last week or so. Then it moved to my thighs at the front. It was Like a muscle spasm where the muscle went really tught and I now have a constant ache in my left thigh and some tingling and cramping feelings in my feet that comes and goes. I can walk on them fine but the aches just won't go. Does anyone else get these aches specifically in the legs.


Posted by KB 10/20 ... I had all of that along with muscle twitching. Once you start addressing your anxiety it does go away. The key is that you are "freaking out". By reacting to your symptoms you are going to make them worse. Accept that your aching is due to anxiety and learn to not give it any importance. The cramping and aching in my legs was one of the first symptoms that went away when I got this condition under control.


Posted by Mark 10/25 ... I also get tingling / buzzing feeling in my feet / legs, usually the right foot. I also have a tight calf muscle and tendonitis in the achilles. For me, it's definitely anxiety related, as I've had nerve conduction tests to rule out any physical cause.


Posted by Mark JB 10/26 ... I've had anxiety most of my life, so it did come first. However, I wasn't suffering badly when the tingling / buzzing started in my foot in 2003. It started as a pulsing vibration in my heel, and at some times can spread upwards even as far as the knee. Sometimes this sensation is in my fingers but that's quite rare. Obviously I was worried about MS so I had the nerve conduction tests (which were quite uncomfortable..) but they came back negative. The buzzing / tingling is not constant, it comes and goes. Although it seems to be worse when my anxiety is high it seems to come back for no reason when I'm feeling OK too. It was attributed to anxiety because the nerve conduction tests and bllod tests were negative. You said your symptoms started before the anxiety, but I had anxiety for 9 years before it was officially diagnosed. Sometimes you don't realise you've got it until it reaches such a peak that it scares you into going to seek medical advice.


Lightning Posted 9/2 ... I've started for a week now getting a vibration that comes and goes in my upper/inner thigh. It feels like I'm sitting on a vibrating cell phone. It just lasts a few seconds at a time.

Anyone?


4sons Posted 9/2 ... Me too ... I "buzz" in weird places. It hops around


There are thousands of posts like this in that board. It is like a broken record in there. As a matter of fact I searched every symptom you mentioned and got hundreds of results for ALL of them. Do ALL these anxious people have some sort of hidden disease?

Anxiety is fed by fear and worry, most of these people have a fear or worry of some hidden disease. It's a disservice to them by having someone telling them they do have a disease.

I don't see how pointing this out is a disservice to anyone who thinks they have a disease. If they don't have any stress in their lives and truly have a disease how can me helping the others that don't be a disservice?

BTW, I don't need to bring this up on the anxiety board, most of them know that is their problem and are working on that issue.
Former BFSer, here to help. BFSymptoms (not a syndrome) are symptoms of nervous system overstimulation. Got my life back thanks to those fine folks at anxietycentre.com whom taught everything I know about this condition.
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