Freakin Scared

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Freakin Scared

Postby Jlc on August 19th, 2013, 1:02 pm

Hello all,

I would like to start out by thanking every single person who is a member on this board. You have saved my life (literally). Special thanks goes out to Chrissi, Matt, Johnny, Robynn and a few others.

I have been sick off and on for 9 months now. I have been convinced of many different illnesses: diabetes, testicular cancer, prostate cancer, yeast infection, Aids, Hiv, Lupus, Sjorgens, ALS, MS, MSA and many others. My current (and last) fixation is PD.

To make a very very long story short, I have been to my family doctor about 40 times, have been an internal medicine patient (discharged), have been to the emergency department about 25 times (in 3 different hospitals), have been admitted to internal medicine, have had about every blood test and culture known to man done (some times twice), have had NCS and EMG, about 20 neurological clinical exams, have been seen by a neuromuscular disease specialist twice, a regular neurologist twice and have seen and am still being seen by a neuro-psychiatrist. I also had a colonoscopy and endoscopy last week. This has all been over a period of about 8 months. Tomorrow, I am getting an MRI done.

Over the last months, I have been diagnosed with the following: costochondritis, IBS, anxiety, stress, depression, insomnia, Severe Somatic Complaint Syndrome, BFS, Tendonitis in both arms, tennis elbow in both arms, a rotated rib cage, mono and extreme dry eyes.

My current symptoms are: Twitches (were body wide at one point but are now mostly in calf muscles), postural tremor in almost every part of body, bowel troubles, urine troubles, dizziness, back pain, ulnar nerve issues, carpal tunnel issues, stiff muscles, a perceived weakness in my ankle, tight throat muscles and mucus in throat, sore facial muscles, extreme dry eyes and a red and saggy *beep* (I'm only 29 and have the *beep* of a 85 year old man).

So... both neurologists told me that they see no evidence of any neurological disease. The second neurologist told me she thinks I suffer from somatization. My psychiatrist also stated that I suffer from extreme somatization and he does not think I have PD (neither does neurologist).

My problem is that I have many of the symptoms of early PD and am VERY SCARED.

I have been admitted to a psych ward and am on lots of medication as I considered suicide multiple times over the last 4 months. I was convinced I had ALS and this was the scariest period of my life. Once the neuromuscular disease specialist told me I have no ALS and "I can prance around on my tip toes like a ballerina"... I took that good news for 1 day then freaked out about bulbar and demanded another appointment. The next appointment he wrote on my file "patient will not accept that he does not have a neurological disease.

I have been told to do yoga, to lift weights, to do CBT (already done) and to "relax".

I can't get over this PD fear. My psychiatrist has ordered me off work for 3 months.

I have a beautiful little red headed daughter and a smokin hot wife (Chrissi and Robyn are cute too... and everyone needs a compliment every once and a while). My wife is on the verge of leaving me and I don't blame her. There have been many times where I was curled up on the front mat (mostly naked) crying like a little baby as I am convinced I am very ill.

Someone b***** slap me please. What the heck is wrong with me??? I have no history of anxiety or depression. Before all this started I was one cool cat. I was a very muscular 230 pounds (now 180) and my entire family is VERY worried about me.

Help me out peeps!!!!????
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Re: Freakin Scared

Postby aztwitchy on August 19th, 2013, 1:51 pm

wow...i appreciate your brutal honesty about your situation. You are very similar to a lot of people on this forum whether you realize it or not. Unfortunately doctors are not going to be able to answer the root cause for BFS. they can assist symptoms or point you in good directions for coping with things but the first thing I would recommend is slowing down your visits to them and avoid going to ER altogether. ER is for life threatening stuff....they are there to keep people alive...they suck at diagnosing for the most part. Secondly i would advise slowing down the doctor visits. In one regard you are showing urgency for your health concerns but on another subconscious level you are putting yourself in a worry\anxiety circle. you also seem to have a pattern going where you focus in on a diease, stress about it, then when you finally realize thats not it instead of embracing that and moving on you return to the cauldron to pick a new one and start all over again. I do this, alot of us do. Part of the process of getting symptoms under control is to stop that cycle. Stop going to the cauldron (dr. google, webmd, medical drama tv shows etc)

my guess is you are a type A personality, you lived fast trying to be the best dad, husband, worker, etc, were under lots of stress (good or bad stress) and finally you hit the red. thats how a ton of stories of people exactly like you read on here. you are no different than them. we all have weird symtpoms, we all have no imminent death sentence, and we all struggle here and there feeling like crap. in some ways I some days think BFS is just a fancy way of saying we all suffered a nervous breakdown.

personally i got things back on track by eliminating caffeine and other stimulants including chocolate. Stopped my extreme fitness regime and replaced it with swimming 3x a week. eliminated process foods and went to a gluten free diet. (I am in the small % of people who benefited from gluten free). reduced self imposed good\bad stress by taking on less responsibility where i could afford to, forcing myself to rest more, stopped staying up late doing stimulating things like video games/Movies/partying. and stopped doctor hopping....decided to trust 1 neurologist and NOT seek a 3rd or 4th or 5th opinion just because a miracle wasn't given in the shape of a pill.

for the sake of your marriage I hope you can slow down, take things a day at a time, and tell your wife you love her and when you spend time with her clear your mind for a while and put a bookmark on your worries so she knows that despite how bad your feeling she is still important.

just my honest opinion....been there done that.....unfortunately they don't give out shirts for this crap.
Last edited by aztwitchy on August 19th, 2013, 1:59 pm, edited 1 time in total.
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Re: Freakin Scared

Postby Seepi27 on August 19th, 2013, 1:53 pm

Jlc wrote:Hello all,

I would like to start out by thanking every single person who is a member on this board. You have saved my life (literally). Special thanks goes out to Chrissi, Matt, Johnny, Robynn and a few others.

I have been sick off and on for 9 months now. I have been convinced of many different illnesses: diabetes, testicular cancer, prostate cancer, yeast infection, Aids, Hiv, Lupus, Sjorgens, ALS, MS, MSA and many others. My current (and last) fixation is PD.

To make a very very long story short, I have been to my family doctor about 40 times, have been an internal medicine patient (discharged), have been to the emergency department about 25 times (in 3 different hospitals), have been admitted to internal medicine, have had about every blood test and culture known to man done (some times twice), have had NCS and EMG, about 20 neurological clinical exams, have been seen by a neuromuscular disease specialist twice, a regular neurologist twice and have seen and am still being seen by a neuro-psychiatrist. I also had a colonoscopy and endoscopy last week. This has all been over a period of about 8 months. Tomorrow, I am getting an MRI done.

Over the last months, I have been diagnosed with the following: costochondritis, IBS, anxiety, stress, depression, insomnia, Severe Somatic Complaint Syndrome, BFS, Tendonitis in both arms, tennis elbow in both arms, a rotated rib cage, mono and extreme dry eyes.

My current symptoms are: Twitches (were body wide at one point but are now mostly in calf muscles), postural tremor in almost every part of body, bowel troubles, urine troubles, dizziness, back pain, ulnar nerve issues, carpal tunnel issues, stiff muscles, a perceived weakness in my ankle, tight throat muscles and mucus in throat, sore facial muscles, extreme dry eyes and a red and saggy *beep* (I'm only 29 and have the *beep* of a 85 year old man).

So... both neurologists told me that they see no evidence of any neurological disease. The second neurologist told me she thinks I suffer from somatization. My psychiatrist also stated that I suffer from extreme somatization and he does not think I have PD (neither does neurologist).

My problem is that I have many of the symptoms of early PD and am VERY SCARED.

I have been admitted to a psych ward and am on lots of medication as I considered suicide multiple times over the last 4 months. I was convinced I had ALS and this was the scariest period of my life. Once the neuromuscular disease specialist told me I have no ALS and "I can prance around on my tip toes like a ballerina"... I took that good news for 1 day then freaked out about bulbar and demanded another appointment. The next appointment he wrote on my file "patient will not accept that he does not have a neurological disease.

I have been told to do yoga, to lift weights, to do CBT (already done) and to "relax".

I can't get over this PD fear. My psychiatrist has ordered me off work for 3 months.

I have a beautiful little red headed daughter and a smokin hot wife (Chrissi and Robyn are cute too... and everyone needs a compliment every once and a while). My wife is on the verge of leaving me and I don't blame her. There have been many times where I was curled up on the front mat (mostly naked) crying like a little baby as I am convinced I am very ill.

Someone b***** slap me please. What the heck is wrong with me??? I have no history of anxiety or depression. Before all this started I was one cool cat. I was a very muscular 230 pounds (now 180) and my entire family is VERY worried about me.

Help me out peeps!!!!????


There is a mismatch between your own awareness of your problem and your inability to do something about it. This is par for the course with people who are of above average intelligence but virtually paralysed by their affliction - and it is an affliction - which is severe generalised anxiety disorder.

And unfortunately there is no cure for this other than a blind leap of faith. You need to simply accept - for no good reason, because you are clearly impervious to reason - that there is nothing wrong with you apart from an over-active autonomous nervous system and an overactive imagination.

Clearly, no amount of tests, doctors' reports and instances of reassurance are going to convince you, so you simply need to believe. For example, when you get on a bus, you trust that the bus driver will get you to your destination and not purposefully endanger your life by driving into a wall. However, while there is no reason to suspect that he may do this, in actual fact, there is no reason to think that he won't either. So your belief is, in effect, blind belief, and every time you get on that bus, you are making a leap of faith. The fact that it is 'informed faith' - i.e. bus drivers don't USUALLY take it upon themselves to drive their passengers to their deaths - it is, nonetheless, faith.

You have to take a leap of faith and believe that you are fine, and that what you are experiencing is a mix of somatization, general anxiety, possibly mixed-up body chemistry and a mind that is in overdrive. There are plenty of good reasons for not believing this; after all, if you did, you wouldn't have broken the world record for medical tests and wasting the time of medics! So, in the absence of good reasons - because good reasons are anathema to you, obviously - simply take a leap of faith and believe that you are basically ok.

Easier said than done? Try it. Cancel your MRI tomorrow. You don't need it. Help yourself take that leap of faith by refusing to add fuel to the fire of your anxiety. And that schedule MRI is just prolonging your agony. Let it go and that leap of faith will be one step easier.

You're fine. You just need to believe that.
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Re: Freakin Scared

Postby Jlc on August 19th, 2013, 2:03 pm

Ahhhh already 2 great replies. The usefulness and greatness of this website cannot be denied. I am trying my very best to do exactly as the two of you have said. Those were 2 great replies and I look forward to many more.

I'm not sure why it is so hard for me to believe that I am ok. I keep thinking of things that I won't be able to do any more and places I won't be able to go. It is a quite destructive mind set that I have.

I will take both posts into consideration and greatly appreciate the responses.

To be honest... it's really the tremors that are bothering me. I could care less about the twitches.

Thanks guys.

I think I am looking forward to a post from Robyn on this one as I have seen her give great PD advice in the past.
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Re: Freakin Scared

Postby aztwitchy on August 19th, 2013, 2:16 pm

Jlc wrote:Ahhhh already 2 great replies. The usefulness and greatness of this website cannot be denied. I am trying my very best to do exactly as the two of you have said. Those were 2 great replies and I look forward to many more.

I'm not sure why it is so hard for me to believe that I am ok. I keep thinking of things that I won't be able to do any more and places I won't be able to go. It is a quite destructive mind set that I have.

I will take both posts into consideration and greatly appreciate the responses.

To be honest... it's really the tremors that are bothering me. I could care less about the twitches.

Thanks guys.

I think I am looking forward to a post from Robyn on this one as I have seen her give great PD advice in the past.


eliminating caffeine got rid of my tremors....i can self induce them if I have a cup of coffee. i also noticed tremors if I am not eating regularly....(i.e. skip a meal or take a later lunch)....all of that is normal.

you have been ruled out of having PD by a board certified neurologist whom i'm assuming went to years of medical schooling and has probably seen thousands of PD patients at this point .... why are you still worried about it?
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Re: Freakin Scared

Postby johnnythejet on August 19th, 2013, 2:45 pm

My perspective, focus, and purpose here has changed so much over the years. First, it was to learn as much as I could about why I was “safe” from all the sinister diseases. I ignored all the scary posts, and only wanted assurance from others pointing me toward what I hoped was the truth. After a while, I would repeat the same facts I learned to help others, while at the same time dipping my toes into the pool of “scary stuff” as my decreased anxiety/insanity allowed me to. I started learning/reading more about ALS, MS, PD, etc. because I ultimately wanted to know the truth, with all facts on the table. Thankfully, all the facts have only confirmed what I was being told all along…..cases like mine (and yours) are clearly benign. As I gained more knowledge I closely read all the newbie posts like yours, in an attempt to diagnose whether or not they were BFS or something else. Not surprisingly, every post I read was the same boring, benign shtuff….lucky for us. After reading about the 500th introduction, my focus changed again which is where I stand today; I read posts like yours not to determine if you have BFS or not, but rather to understand exactly how severe is your anxiety and mental health problem. Are you one of those people that will accept the facts and get back to “real life” in a reasonable amount of time, or will you wallow in your malignant, self-perpetuating, irrational thoughts leading to more and more loss of life?

So far, I’d say you fall squarely into the 2nd category. The question now is….what are you going to do about it? You’ve come here for help, but do you even know what it is you need? Based on the staggering number of doctor visits, tests, ER trips, etc. you do NOT need any more reassurance from medical professionals. If you won’t accept the truth that you are free of ALS, MS, PD, etc. then what’s the solution to your problem? Have you realized that these repeat visits/tests/questions are actually feeding the problem instead of helping it? I think your goal should not be seeking more people to agree that you’re PD-free, but rather to dig deep down and figure out what it is, exactly, that you need in order to get past this. I just hope you figure it out before you lose the things in life that are most important to you.
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Re: Freakin Scared

Postby SecretAgentMan on August 19th, 2013, 2:47 pm

I think that the main problem that people have in accepting a 'clean bill of health' from their trusted doctors is because they know what normal feels like and BFS isn't normal. I know I fell into this category way back when I first started having symptoms and my docs told me that it was nothing sinister. My problem was, OK, so if it's nothing sinister then what the heck is it?? I didn't like how BFS is really an exclusionary diagnosis. You don't have this, this, or this but you do have twitching, anxiety, and a bunch of other stuff so you just fall into this category. Then they tell you to relax because you're not going to die from it. Well, that's great and all but I also knew that I had something now that I didn't have before and I had no answers on where to go from there. That's one of the reasons this board is so helpful. People are knowledgeable and experienced in knowing helpful hints on where to go from here, where the doctors leave you wondering.

There is a little bit of a problem with this too because there are so many diverse people on this board who benefitted from different things, some contradict each other. So each person just has to sort of immerse themselves in the immense volumes of knowledge and experience and figure their own path out. It can take time for people to find what helps them out as they sift through different ideas and try new things. It is also easier said than done to calm down and not freak out about every new symptom. Some people chime on the board every single time some little new thing crops up and ask 'is this normal?' Other people get the picture much quicker and realize, yep, its normal (at least for BFS). Everybody has their own temperament and their own pace.

I actually branched out form the main stream when conventional medicine failed me. I didn’t need 40 doctor visits to determine that they had no idea how to help me. I didn’t even need to start taking the med’s they wanted to prescribe me to know that it wasn’t going to truly help me. I noticed a lot of digestive symptoms in your write up and also noticed you talked about a yeast infection. You may be a good candidate to get tested for IgE antibodies for newly developed food allergies. It is very relevant to the neurological manifestations of BFS as well as your stomach, bowel, and digestive issues described. I didn’t believe in any linkage or connection when my first alternative medicine doc suggested this so I don’t blame you if you doubt it too. Look into it though and research some of my posts if you want to learn more. It’s something I’d seriously consider ruling out if I were you based on your concentration of issues in that area. Welcome to the board.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Freakin Scared

Postby Jlc on August 19th, 2013, 2:49 pm

I agree with you Johnny. You are the man. Thank you. This "BFS" is such a ridiculously awful monster to get used to. I see symptom lists like Chrissi's and wonder how anyone with that many symptoms could possibly believe they have a benign condition. I have as many symptoms as Chrissi and this is really difficult to accept. I guess, like all of you have said, I just need to take a leap of faith and hope that everyone is right. I mean... that many doctor's can't be wrong... right?
:D
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Re: Freakin Scared

Postby johnnythejet on August 19th, 2013, 3:07 pm

Jlc wrote: I guess, like all of you have said, I just need to take a leap of faith and hope that everyone is right. I mean... that many doctor's can't be wrong... right?

Right.
Its not even about faith that this point. I had a cold last week which included a monster headache. Did I really need "faith" to understand my headache was part of my cold of instead of a symptom of some horrible disease (one with shares "headache" as a symptom)?
No. Its common sense.

Your situation is about accepting the TRUTH that I'm okay, that chrissi (with her list of symptoms) is okay, that you are okay, along with every other person who has come through this community and shares the same story. It's no coincidence that all the doctors and people here agree your symptoms represent a benign condition. They agree because they all see what is plainly true....even if you don't.
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Re: Freakin Scared

Postby Arkansan on August 19th, 2013, 5:11 pm

I totally get where you are coming from. For several years now I have cycled from one health anxiety to the next. First it was blindness, I was always sure I was going blind and swore I couldn't see as well as I used too. Then it was concussions, I was sure every little bumb had rung my bell. Next up was HIV, I was terrified that I might come into contact with someone's blood. Not to mention that I completely gave up beef for fear of Mad Cow disease.

Then last year I had a bout of AFIB, and within a month BFS followed. I constantly worried my heart might stop, then I had a bout of tremoring in my left arm whilst washing dishes, I had been having some muscle twitches as well so I googled it and found ALS. Thus a constant terror of that disease was my companion for a year. It starts to get better and then I notice my hand tremoring while reading a book and BAM, PD fear (despite the fact that it had been doing it for a year already with little to no change).

This state of mind we are in is terrible, I too have found that the members here are terrific folks who can provide a lot of morale support. However I too have found that it only helps get through that particular instant in time, the real solution lies with us, even though it is hard to accept I have been trying to work my way to it for a few weeks now. We can overcome this state of mind. We just have to find the method that works for us, I have found that what I have to do is change my frame of reference, I have to make the constant conscience effort to choose to see this in a positive light. Also staying occupied with positive things helps, another thing I have to do police my own thoughts. What I mean is that I have to stop and say "no I refuse to dwell on this now, how about I think another thing instead". You have had all the physical reassurance that a person can have that you don't have PD, now you have to figure what you need to do to begin believing it.

I understand that it is incredibly difficult, this poisonous mode of thinking we are in can be all consuming. However it can get better, just take it one day at a time. I am struggling myself, the members here can attest to the fact that I pop in from time to time with a thread with some silly question about some symptom that has been discussed a thousand times before, but I have decided to make a fight out of it and take my life back.

I understand the fear of PD, my paternal grandfather developed it recently, though he is in his 70's and had a long amateur boxing career, but seeing it still fuels that fear. The men in my family are all fighters so it has actually something that I have always been aware of and something they have all expressed a fear about.

If you want somebody to talk to on this one, or any other health anxieties in general I will be happy to post in any threads you put up or you can PM me. Sometimes it helps to talk to someone who also is in the middle of severe health anxiety.
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Re: Freakin Scared

Postby StressLess on August 19th, 2013, 7:43 pm

I agree wholeheartedly with SecretAgentMan and Johnny. You need to get a grip of your anxiety. The trick to not letting you beat it is quite simple. Every time one of those irrational thoughts enters your mind, don't get scared and let it frighten you. Let it float around, and think: "I'm fine." Concentrate on something else, even if it's a white wall, look at it, examine it and the thought will disappear. You have been tormenting yourself for so long that your brain needs to be retrained. By fearing the thoughts, and crying, and letting it destroy your life, you are just giving into the anxiety - not the illness' you believe you have.

What I find amazing on this forum, is that nearly everyone who has stayed here has been 'cured' of their anxiety and not cured of their BFS, but they live happy, normal lives. That tells me something about BFS. It's not that bad when you get past the anxious part of having something that isn't normal. Just look at all the people you mentioned - they all live their lives, regardless of their BFS. This is a mental game, buddy. The sooner you realise that, the better off you'll be. It took me two weeks, it takes others months or even years, but that's how you beat BFS.
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Re: Freakin Scared

Postby Jlc on August 19th, 2013, 8:41 pm

Thanks so much everyone for all the great advice. 2 weeks holy jeez I wish!!! Arkansan, I have followed your entire history on this site as your story and fears are very similar to mine. I really have to beat the beast (get your minds out of the gutter!).


I really can't believe that I am having a hard time believing 30 doctors. I think I know more than them. That is ridiculous.


Thanks again everyone. I'll keep you all updated.
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Re: Freakin Scared

Postby Arkansan on August 19th, 2013, 9:19 pm

Well like I said, if you have a question or just want to let some steam off about it just let me know. It really does get better with time and we can wrestle this under control.
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Re: Freakin Scared

Postby Tiber2011 on August 20th, 2013, 9:53 pm

JLC, I'm a 28 year-old guy. You sound like me.

During a very stressful late 2012-early 2013, my body blew up with: twitches, tingling, cramps, fasics, vibrations, shocks, pain, numbness, tightness, and now dizziness. My twitches were body-wide, but now mainly in my legs with tremors.

I saw GP #1 three times, GP #2 two times, ophthalmologist #1 three times, ophthalmologist #2 one time, neuro #1 one time, neuro #2 three times, neuro #3 one time, neuro #4 two times, neuro #5 one time, endo #1 one time.

Two neuros are MS specialists. One works with ALS patients. One brain MRI on a new machine. One 3-part back MRI. Two EMG-NCTs.

Bloodwork of all types done. And nothing has been found, except fibromyalgia and BFS.

Each day I live one day at a time. I am trying to bring myself down to Earth with the help of this forum, although I'm still terrified of MND and MS. You're quite remarkable. I asked my last neurologist if I could do any more imaging, and he said there was no need to. I wanted to throw a fit like a toddler on the floor.

As for IBS, weren't you told the link by your endo? - anxiety causes all the nerves in the digestive tract to act up and make your bowels suck.

I know the feeling of doing away with yourself. I've had my moments - I'm single, work alone and isolated from others,and I live alone. If I was to become ill, who'd visit me? But, you have a daughter. You can still move around for her.
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Re: Freakin Scared

Postby Jlc on August 20th, 2013, 10:47 pm

Ahhh Tiber, that is a very similar story to mine and I could easily tell you that after seeing that many doctors you could rest assured that you have nothing sinister... But that would make me a hypocrite now wouldn't it? Haha


I, just like many on this website, just want to stop thinking about all of this stuff and have my old life back. I don't care about the symptoms as long as I can be assured that they are benign.


This bfs is a curse but it sure puts a new perspective on things.
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Re: Freakin Scared

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