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Old 02-17-2005, 09:33 PM   #1
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Help! What is wrong with me?

Thanks in advance to anyone who takes the time to read through this. I'm desperate for help.

I am 21 year old male. I'm not exactly sure when my problems started, but my first symptom -- at least the first one I noticed -- was erectile dysfunction. I'm not precisely sure hold old I was when I noticed something was wrong but I guess I was around 15 years old. I had normal, frequent erections up until that point, however. I told my doctor about my problem and he reassured me that everything was fine and that it was all in my head. I had the feeling it wasn't, but I accepted his answer, in part, perhaps, because I didn't want to believe that there was anything wrong. In addition, the erectile problems I was experiencing weren't, at that point, terribly bad. But the function of my penis was significantly different than it used to be.

Fast forward a couple years. Around the age of 17-18 I experienced a couple spells of incredibly frequent urination. I would go to the bathroom several times in a row. My urine stream was very weak and very little urine would come out when I urinated. It was uncomfortable and annoying but not painful. For some reason --denial?-- I didn't see a doctor. It has since become worse, which I will get back to.

Also, around this time I noticed that every once in a while my left hand would sometimes turn a sort of bluish color, which I presume has something to do with blood. It only occurs when my hand is down by my side, and the color returns to normal if I lift up my hand above my head. It doesn't happen all the time and I can't figure out what triggers it. But it is definitely not normal. It wasn't painful at all, so I didn't think anything of it. I mentioned it to my doctor at one point, and she didn't think it was anything to be concerned about. Since then, I have read about Raynaud's syndrome and looked at pictures, and I am very confident that I DONT have Raynaud's.

Two things I should add. I was always very active and athletic. I played sports and exercised. Also, in retrospect, I can see that I was very fatigued throughout these years, but didn't realize it. It's only looking back that I can see how I was tired all the time and how I went from being able to exercise and run long distances, to slowly not having any energy at all.

My erectile problems got worse. At age 19, I finally realized that something was definitely wrong. Looking back, I should have known much sooner but I was in denial, I guess. I went to a urologist and he said he didn't know what was wrong.

Over the next couple months, my health got much worse. First, I started to get terrible heartburn. Then, one day I was exercising --nothing intense--and I noticed my knees hurt really bad. I should probably also mention that when I used to exercise, I would sweat A LOT.

A few weeks later, I had exercised mildly again. Afterwards, I felt horrible. For the next 2 weeks or so I was extremely fatigued. I would wake up in the morning feeling like I didn't get any sleep. My joints in my knees and elbows hurt. Mentally, I was very cloudy and spaced out and couldn't concentrate.

I had all the bloodwork done and everything turned up normal.

Around this time. My other hand, my right one, started doing the same thing that my left one had been doing for the past couple of years: turning a purplish color when I hang it by my side and returing to normal when I raise my hand above my head. It doesn't do it everytime my hand is down, but it does happen very frequently. Up until that point, I just assumed that the hand-changing-color thing didn't mean anything. I thought it just happened because at one point I punched a hard object with my left hand and I figured I damaged something. But when my right hand started doing the same thing right after my health became dramatically worse, I figured it must mean something.

So at this point I have all these problems: erectile dysfunction, urinary dysfunction, hand-changing-color, heartburn, extreme fatigue, mental cloudiness, etc.

A couple months later--I'm still 19-- I start getting muscle twitches all over my body.

Around age 20, I notice that sometimes I get this tingling feeling all over my body. I also start to itch a lot in the shower or when i get hot. And when it's really bad I break out in a rash with little red dots.

About the urinary problems. It is incredibly frustrating. I feel like I don't empty myself out when I urinate. Only a little bit of urine comes out. And the fuller my bladder is, the less I urine output I have. I always have to not drink and wait for my body to slowly empty itself out. I hate this feeling of not being able to drink because it will make me urinate all the time.

I have recently discovered that my fatigue and mental cloudiness and general feeling-rotten feelings, increases the more I drink. If I don't drink any fluids for a while, I feel better. But if I drink a certain amount, my eyes become terribly bloodshot, I get a horrible headache, and I feel extra fatigued. How can drinking fluids make me feel so awful? Has anyone heard of anything like this?

I had a cystoscopy performed and everything was normal.

I went to a neurologist and had an mri and he says everything was normal.

Bloodwork is normal.

I can't function. I'm not working or going to school. It's frustrating going to the doctor. I have so many problems that I feel like many of them don't believe me, or they think I'm crazy. Erectile dysfunction is unheard of in people my age, one doctor made it clear that he didn't take me seriously and didn't even believe me. I've lost a decent amount of weight too.

It if would be beneficial to anyone, I could explain my problems in more detail. There's so much to write and describe. I just sort of outlined what's been going on. I've probably forgot some things, too.

If anyone can help, I would be extremely appreciative.

 
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Old 02-18-2005, 04:22 AM   #2
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Re: Help! What is wrong with me?

Did you have an MRI on the cervical spine?this could be where your problems are stemming from.Possibly a herniated disc with some spinal compression?You are having alot of the same symptoms that I am having and i have damage to my C 7,8(nerve)and the T 1.Get an MRI on your cervical spine and see what pops up.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-18-2005, 05:19 AM   #3
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Re: Help! What is wrong with me?

I know they mentioned that to my hubby when he was having problems with his discs so that is something worth looking into. Your prostate is ok?

 
Old 02-18-2005, 06:26 AM   #4
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Re: Help! What is wrong with me?

It is indeed extremely frustrating when it seems that medical professionals are "ignoring" a patient's complaints or worse -- that they do not believe there is anything wrong at all.

At the same time, you need to understand that they are basing their diagnosis (or lack of diagnosis, in this case) upon the results of appropriate tests as well as appropriate physical examinations.

So there are a few possibilities here:

The docs are missing something.

The patient is not providing full disclosure.

There are one or more symptoms that need to be addressed and at the same time, there are some symptoms that are being exaggerated. This mix of real, physical problems and psychological manifestations is confusing both the doctors and the patient, making treatment and diagnosis more difficult.

I'm betting on option #3 here.

Dude, I know this is not what you want to hear. I'm not saying there is NOTHING wrong with you at all -- but I AM saying that I think you are very possibly extrapolating a few normal, common incidents with something much more sinister and serious which does not exist at all!

Your chief complaints do not really fit any known etiology when taken as a whole.

Yet it is true that you are complaining of symptoms which could be indicative of one or more OTHER, more minor problems.

Let's look at a few things here...

You are very vague as to what, exactly, you mean by "erectile dysfunction." You gave no description of what you experience. You report that this started at a very early age. This is, in fact, quite uncommon, just as your doctors told you. Not impossible, but not likely, either. Do you get morning erections? If so, your penis is working properly. Look for a psychological component if you have erectile difficulty only when in a sexual situation. It is difficult to help you narrow things down without a more detailed report as to what, exactly, is "wrong" with your penis. If you would care to discuss that at length, please feel free.

Presumably you are getting erections at least some of the time. If you NEVER got an erection since your late teens, I'd hope you would have been to every urologist in the nation by now! I can't imagine any male going through his sexual prime in a flaccid state!

The feeling of incomplete voiding when you urinate -- how frequent is this? If it is a daily thing it needs to be looked into more seriously. If it happens now and then, a few times a year -- this is pretty normal. In fact, I've had this rather odd sensation myself. Every now and then, with no apparent cause, I will urinate and feel as if I need to urinate again almost immediately. Some men can urinate at least a few drops of urine pretty much on command. We learn to control our bladders during childhood. Is there a potty training scenario that needs to be examined? Seriously, this is something to consider. In the absence of a urinary infection and in the absence of an enlarged prostate -- almost certainly this sensation is of little consequence.

Exactly HOW much purple cast do your hands take on when they feel cold and change color? Do they look slightly chilled or deep purple like watered down grape juice? Has a doctor ever SEEN this change in color or has it never happened when you are having an exam? Can you MAKE this happen by keeping your arms in place at your sides or is it sporadic? Have you tried swinging your arms around out at your sides in a pinwheel motion and observed whether or not they regain their color? Your blood pressure is certainly normal -- it would have been noticed on a routine exam if it wasn't. Back and spinal problems could very well be a factor -- and these are often hard to diagnose.

Systemic disease seems highly unlikely. Stop searching the internet to read about various diseases! You'll start to convince yourself you have something that's only found in Equitorial Guinea or something...

You mention you sweat -- A LOT. So do I. Everyone sweats differently: some folks barely get damp, others drip buckets. Our sweat glands work overtime sometimes and some of us have more of them than others. There are various ways to combat this. It doesn't sound like a problem to me. Even NIGHT SWEATS aren't necessarily indicative of any disease, yet they are oft-listed as a mysterious and sometimes terrifying symptom when we start studying various diseases. Most of the time night sweats are just what their name implies: sweating at night. It means nothing -- but of course it is true that these should never be ignored, either. But they are no cause for panic.

Your knees hurt. Well, you're a self-proclaimed ATHLETE. Seems logical that your knees might hurt after lots of working out and playing sports. In fact, just take a moment and consider the number of times we hear about athletes having knee surgeries and knee problems. You are putting massive stresses on your knees -- you may have injured them or they may simply hurt because you've been working out. Athletes certainly have the highest reported incidence of knee problems!

Heartburn. This can be the result of many, many things, not the least of which is a poor diet! Yet it can also be caused by many physical factors. It could also be caused by a developing ulcer induced from worrying too much. Hmmm... Everyone gets heartburn sometimes. Some folks get heartburn much more often than others. Sometimes this means nothing at all -- sometimes it means there is another problem that needs to be addressed.

With all the worrying you are doing about your body, it would also seem logical and likely that your erectile problems might get worse, as you say they have. But I'd still like to know HOW much worse they are and explicit (but clinically stated) details as to why, when and how this happens.

Loss of energy, lethargy and exhaustion. Also common in active, athletic people. Also common when certain viruses are present. Also common when someone WORRIES too much. Also common when someone's sleep is interrupted and they don't know it. TONS more reasons, too -- not the least of which is simply being tired -- life is exhausting sometimes and we first start to notice this fact as we transition from our early adolescence into adulthood. School, work, sports... take their toll.

Buddy, my very honest opinion here is that you would benefit much more from some mild counseling sessions than you will from all these physicians who are NOT finding anything wrong or abnormal with you AT ALL.

Again, I know this isn't what you want to hear but someone has to have the guts to tell you this.

HOWEVER, before you get mad at me, let me also say that I DO think it is very possible that there are maybe one or two things which require some medical attention. Yet I don't know WHICH of those things we need to examine more carefully based on your post alone.

I think you have a medical issue that needs to be resolved but that many of your other symptoms are the result of stress and fear and over-canalization.

You are far too young and far too active and healthy to be having these kinds of problems (except for a few, like heartburn).

I could give you a long list of all the possible diseases which can cause several of your symptoms -- to what avail? You already know what they are, don't you? You've read about them ALL online.

This online passion to self-diagnose is a HUGE problem these days.

The internet is a MARVELOUS resource that I personally cannot live without. Yet it can be a DANGEROUS tool at the same time.

I think you have some sexual issues which need to be addressed. You are focusing too much on your bladder, voiding your bladder, sensations in your bladder, erectile problems, etc. You are to the point now where you worry about DRINKING. This is dangerous. Drinking fluids will NOT cause these problems, nor will NOT drinking fluids causes these problems.

Please post more details -- I am especially interested in hearing about how you define erectile difficulty.

It's not that I disbelieve you -- but I do think you are possibly looking in the wrong direction for the answers to many of your complaints. I believe you have a few problems that could benefit from medical attention and other issues that need to be addressed by some counseling.

Let's take care of all of these things NOW, so you can become a healthy, active, happy adult, OK?

I'm on your side here. Just because I'm telling you things you don't want to hear doesn't mean I don't CARE.

The docs cannot find anything wrong with you -- and you've presented to many docs with various specialties. The tests have come back CLEAN. The tests do not lie.

So let's broaden our perspective here, OK?

Hope to hear more from you soon.

 
Old 02-18-2005, 06:43 AM   #5
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Re: Help! What is wrong with me?

I just wanted to post and tell Scruffy Guy that was the nicest, kindest, thing you just did to take the time to post these things to this young man. I dont think he could be angry. I think your post should make him feel better. I know if I were him, and someone like you took the time to say all the things you did, I would be so grateful and relieved.

Its nice to see there are still good people out there, who are educated, and willing to share their knowledge to help others.

 
Old 02-18-2005, 11:59 AM   #6
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Re: Help! What is wrong with me?

exit21
Try not to get too discouraged.

You stated that you do not work or go to school...so would this mean your symptoms are significant enough that you; 'cant' work, 'opportunities don't exist', or you are not looking?

What activities if any do you do in this spare time? Walk, Ride Bike, Play video games, Watch TV.?
What foods are you eating?
Activity and Food have a significant affect on how our bodies function and how we feel.

Becareful with what you are seeking as some people fall into a trap of 'looking for a problem' rather than dealing with the problem. Dealing with it will be some of the following;
i) asking questions - which you are doing,
ii) narrowing down the instances and tracking events/situation before each symptom occurs,
iii) writing down observations - these will need to be decifered in a clear manner in order to communicate with any physician,
iv) search for various information to eliminate the major concerns - since you've had tests done; those can be scratch off, or parked for now.
v) accept things as they are and do whatever you can with what you have. day-by-day, but still be aware of your body.

P.S. The thoughts on the disc is plausible; good to check out. Dont' forget to document what you can, but do not allow this to run your life.

Though some of those comments already shared may sound judgemental, they shouldn't. The reality is, people perceive information differently from what is shared. Doctors usually try to do their best to understand, however, they are not always the best listeners, and we ourselves are not always the best communicators.

Good Luck

Last edited by moreinfoneeded; 02-18-2005 at 12:00 PM.

 
Old 02-18-2005, 04:02 PM   #7
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Re: Help! What is wrong with me?

My post is too long so it will be cut in half

Quote:
It is indeed extremely frustrating when it seems that medical professionals are "ignoring" a patient's complaints or worse -- that they do not believe there is anything wrong at all.

At the same time, you need to understand that they are basing their diagnosis (or lack of diagnosis, in this case) upon the results of appropriate tests as well as appropriate physical examinations.

So there are a few possibilities here:

The docs are missing something.

The patient is not providing full disclosure.

There are one or more symptoms that need to be addressed and at the same time, there are some symptoms that are being exaggerated. This mix of real, physical problems and psychological manifestations is confusing both the doctors and the patient, making treatment and diagnosis more difficult.

I'm betting on option #3 here.

Dude, I know this is not what you want to hear. I'm not saying there is NOTHING wrong with you at all -- but I AM saying that I think you are very possibly extrapolating a few normal, common incidents with something much more sinister and serious which does not exist at all!

Your chief complaints do not really fit any known etiology when taken as a whole.

Yet it is true that you are complaining of symptoms which could be indicative of one or more OTHER, more minor problems.

Let's look at a few things here...
Quote:
You are very vague as to what, exactly, you mean by "erectile dysfunction." You gave no description of what you experience. You report that this started at a very early age. This is, in fact, quite uncommon, just as your doctors told you. Not impossible, but not likely, either. Do you get morning erections? If so, your penis is working properly. Look for a psychological component if you have erectile difficulty only when in a sexual situation. It is difficult to help you narrow things down without a more detailed report as to what, exactly, is "wrong" with your penis. If you would care to discuss that at length, please feel free.

Presumably you are getting erections at least some of the time. If you NEVER got an erection since your late teens, I'd hope you would have been to every urologist in the nation by now! I can't imagine any male going through his sexual prime in a flaccid state!
About the erectile dysfunction. I'm very confident that it isn't psychological. I don't have any anxieties about sex or my physical appearance or anything else. I have a loving, supportive girlfriend who I'm sexually attracted to. I don't have any confusion about my sexuality or any childhood issues involving sex. Furthermore, these problems occur all the time, whether it's masturbation or with my girlfriend. I almost never have morning erections and the ones I do have are very weak and nothing at all like they used to be. I never get spontaneous erections in the daytime. I used to get them several years ago, but not anymore. I can get a weak erection only by using my hand and the moment I stop masturbating the weak erection I have goes flaccid almost immediately, whereas in the past this didn't occur. I can achieve orgasm; however, I ejaculate much quicker than I used to and my orgasms are not nearly as intense. Also, one urologist put a thing around my penis (I forget what it's called), it's sort of like a much smaller version of thing doctors put around your arm to take blood pressure, and he did say that he found a decreased blood flow to my penis but he didn't know why.

Quote:
The feeling of incomplete voiding when you urinate -- how frequent is this? If it is a daily thing it needs to be looked into more seriously. If it happens now and then, a few times a year -- this is pretty normal. In fact, I've had this rather odd sensation myself. Every now and then, with no apparent cause, I will urinate and feel as if I need to urinate again almost immediately. Some men can urinate at least a few drops of urine pretty much on command. We learn to control our bladders during childhood. Is there a potty training scenario that needs to be examined? Seriously, this is something to consider. In the absence of a urinary infection and in the absence of an enlarged prostate -- almost certainly this sensation is of little consequence.
The feeling of incomplete voiding is a daily occurrence. I'm sorry if I didn't make that clear. The first couple times that I remember it happening I was 17-18 and didn't think anything of it. But it has since got to the point where it happens all of the time, although sometimes it is worse than other times. It seems to be worse at night before I go to sleep. I'm not sure exactly what makes it get worse, but I'm pretty sure that it has something to do with how much I have had to drink. As I said before, if I drink a certain amount of, say, water my eyes become extremely bloodshot and watery and I get a horrible headache and I feel terrible and my mind gets cloudy. I have a hard time believing that I'm somehow imagining these very bloodshot eyes of mine. It would have to be some sort of mass hallucination because my parents notice it too. And I'm not talking about drinking some insanely huge amounts of water. It doesn't take much. For example, I will start to feel sick and I'll realize that I shouldn't drink any more fluids until my body has emptied itself out, which takes a long time because when I urinate not much comes out. I can abstain from drinking any fluid for like two days and still be urinating (Yes, I know, it's not good to limit how much I drink, it's not good not drink, etc. I know this). I know you said that drinking can not cause these problems, but I'm telling you either they DO cause these problems or some mysterious coincidence occurs and I get a terrible headache and very bloodshot eyes. And when I feel bad, I DO feel better by not drinking anymore until I have emptied myself out a good bit. After I empty myself out a good amount I feel much better, the bloodshot eyes go away, I can think more clearly (although I still don't feel good, just better).

And, no, there is no potty training scenario or any spotty issues in my past relating to urination.

Quote:
Exactly HOW much purple cast do your hands take on when they feel cold and change color? Do they look slightly chilled or deep purple like watered down grape juice? Has a doctor ever SEEN this change in color or has it never happened when you are having an exam? Can you MAKE this happen by keeping your arms in place at your sides or is it sporadic? Have you tried swinging your arms around out at your sides in a pinwheel motion and observed whether or not they regain their color? Your blood pressure is certainly normal -- it would have been noticed on a routine exam if it wasn't. Back and spinal problems could very well be a factor -- and these are often hard to diagnose.
When my hands change color, they do not turn cold. I would say the color could be described as deep purple or watered down grape juice. However, sometimes the color change is quite dramatic, while other times it is less so.
A doctor has never seen this happen, nor asked to see it happen. It happens more commonly in my right hand; but it seems to be more severe in my left hand, although less frequent. In my right hand, it is pretty consistent but it is still somewhat sporadic. I could probably get it to occur at the doctor's office, but I'm not certain. I have never tried spinning my arms in a pinwheel motion to see if they regain their color. I have the feeling they would, but I will try and see what happens. If I lift my hand the color does go away.

I also want to reiterate -- so I don't seem like I'm looking for minor problems and finding something sinister in them -- that when I first noticed this problem in my left hand a few years ago, I didn't think anything of it. It was only when my right hand started doing the same thing a few years later in the midst of my health getting dramatically worse that I thought it could possibly mean something. Regardless, this isn't a problem for me. I could live my whole life with my hands changing color without being bothered one bit by it. The erectile dysfunction and the urination problems and extreme fatigue, however, DO bother me and DO have a huge impact on my life. I only mentioned the hand-changing-color thing because I though it might mean something when looked at in the context of the other problems I am experiencing, not as something in its own right that I am concerned about.

Quote:
Systemic disease seems highly unlikely. Stop searching the internet to read about various diseases! You'll start to convince yourself you have something that's only found in Equitorial Guinea or something...
I'm aware of the dangers of self-diagnosis. It is certainly easy to get worked up over something you read on the internet. But the only thing I know to do is try to be aware of this tendency and be on guard against it.

 
Old 02-18-2005, 04:08 PM   #8
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Re: Help! What is wrong with me?

Quote:
You mention you sweat -- A LOT. So do I. Everyone sweats differently: some folks barely get damp, others drip buckets. Our sweat glands work overtime sometimes and some of us have more of them than others. There are various ways to combat this. It doesn't sound like a problem to me. Even NIGHT SWEATS aren't necessarily indicative of any disease, yet they are oft-listed as a mysterious and sometimes terrifying symptom when we start studying various diseases. Most of the time night sweats are just what their name implies: sweating at night. It means nothing -- but of course it is true that these should never be ignored, either. But they are no cause for panic.
I mentioned the sweating, but I never said that I was overly concerned about it, or that I thought it was definitely related to the other problems I'm facing. I figured I'd throw it out there, in case it meant something to anyone. Sweating, like the hand-changing-color thing, is something I can live with, not like the other problems. Also, the sweating only occurs when I'm active, not if I'm just sitting down relaxing. And, of course, I know it's normal to sweat a great deal during physical activity, but it did seem like the amount I would sweat was not in proportion to the amount of physical exertion that would occur, or was in proportion to how much I used to sweat. Nonetheless, I still am perfectly willing to assume that the sweating thing is no big deal.


Quote:
Your knees hurt. Well, you're a self-proclaimed ATHLETE. Seems logical that your knees might hurt after lots of working out and playing sports. In fact, just take a moment and consider the number of times we hear about athletes having knee surgeries and knee problems. You are putting massive stresses on your knees -- you may have injured them or they may simply hurt because you've been working out. Athletes certainly have the highest reported incidence of knee problems!
Maybe I wasn't clear. I USED to be active and engaged in sports. That is no longer possible. In my later teenage years, I began to feel more and more fatigued. I went from being able to run several miles at a time to not being able to not being able to exercise mildly for a few minutes without being extremely fatigued and having to sit down. I stopped playing sports. I wasn't injured and I didn't do anything to cause me to be out of shape. Even when I noticed that I was extremely fatigued, I didn't think anything of it. I didn't think that I must be sick or anything like that. I just brushed it off. I only mention that because it goes against the theory that I'm looking for problems. In fact, even when I would get extremely fatigued I would still often try to exercise because it just never occurred to me that I might have something wrong with me, even though after just a few minutes of mild exercise I would be completely enervated.

I didn't think anything was wrong with me until after I was 19. As I said before, I first told my doctor that there seemed to be a change in my erections when I was around 15. Because he reassured me that everything was fine, and because I knew that these things just did not happen to someone my age, for the next four years I ignored my worsening function and somehow convinced myself that everything was fine. I did the exact opposite of someone in need of counseling who was looking for problems that didn't exist. I also didn't think the frequent urination was a big deal, likewise for the hand-changing-color thing, the fatigue, and the heartburn.

I only realized that something was wrong when I had some mild exercise and for the next week or two I was completely wiped out. I felt terrible, I had zero energy, my joints hurt, and mentally everything was foggy. I woke up feeling like I didn't sleep at all.

These were not the normal feelings of pain, soreness, and fatigue that result from physical exertion, which I know quite well from years of being very physically active. The pain in my joints was not normal, and wasn't at all in proportion to the very mild physical exertion. Also, my the joints in my elbows hurt and I wasn't even using my arms.

Quote:
Heartburn. This can be the result of many, many things, not the least of which is a poor diet! Yet it can also be caused by many physical factors. It could also be caused by a developing ulcer induced from worrying too much. Hmmm... Everyone gets heartburn sometimes. Some folks get heartburn much more often than others. Sometimes this means nothing at all -- sometimes it means there is another problem that needs to be addressed.
When I first started to get heartburn it was before I finally realized that something was physically wrong with me. Therefore, it couldn't be the result of worrying too much. I eat healthy foods and I have cut out all the foods that are supposed to contribute to heartburn. I take Nexium and that helps a lot. I have had an upper GI and an endoscopy. They both found that I had reflux, but no ulcer. The endoscopy was after I had been taking Nexium for a while though.

I first started getting heartburn about a month and a half before I got very sick after exercising and realized that something was wrong. When I first got heartburn I didn't freak out and assume that something was terribly wrong, I just assumed it was no big deal. It was after I got very sick, that I started to put all my disparate problems together and think that they might be related.

The heartburn is not occasional either. One day I felt heartburn. I had it every day after that and it slowly got worse until I saw a doctor and started taking Nexium. If I stop taking Nexium it comes right back.

Quote:
With all the worrying you are doing about your body, it would also seem logical and likely that your erectile problems might get worse, as you say they have. But I'd still like to know HOW much worse they are and explicit (but clinically stated) details as to why, when and how this happens.
As I said above, after the first visit to the doctor when I was 15 I assumed nothing was wrong and I didn't worry about my erectile dysfunction again until I was 19. Furthermore, the ED happens all the time, even when I am masturbating alone and completely relaxed.

Quote:
Loss of energy, lethargy and exhaustion. Also common in active, athletic people. Also common when certain viruses are present. Also common when someone WORRIES too much. Also common when someone's sleep is interrupted and they don't know it. TONS more reasons, too -- not the least of which is simply being tired -- life is exhausting sometimes and we first start to notice this fact as we transition from our early adolescence into adulthood. School, work, sports... take their toll.
I really don't know how to respond. I hope you'll just take my word that I can differentiate between everyday run of the mill fatigue and extreme, debilitating abnormal exhaustion. But I do want to say again that I worried about my health AFTER I was sick not before. If anything, I was underconcerned. It was after that episode I mentioned above that I finally acknowledged that something wasn't right. I also want to make clear I am fatigued all the time, although sometimes it's worse than at other times.

Quote:
Buddy, my very honest opinion here is that you would benefit much more from some mild counseling sessions than you will from all these physicians who are NOT finding anything wrong or abnormal with you AT ALL.

Again, I know this isn't what you want to hear but someone has to have the guts to tell you this.

HOWEVER, before you get mad at me, let me also say that I DO think it is very possible that there are maybe one or two things which require some medical attention. Yet I don't know WHICH of those things we need to examine more carefully based on your post alone.

I think you have a medical issue that needs to be resolved but that many of your other symptoms are the result of stress and fear and over-canalization.
Quote:
You are far too young and far too active and healthy to be having these kinds of problems (except for a few, like heartburn).
Just to reiterate. I'm not physically active anymore. I have slowly degenerated to the point where it is no longer possible to be.

 
Old 02-18-2005, 04:12 PM   #9
Junior Member
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exist21 HB User
Re: Help! What is wrong with me?

Quote:
I could give you a long list of all the possible diseases which can cause several of your symptoms -- to what avail? You already know what they are, don't you? You've read about them ALL online.

This online passion to self-diagnose is a HUGE problem these days.

The internet is a MARVELOUS resource that I personally cannot live without. Yet it can be a DANGEROUS tool at the same time
I understand the danger of self-diagnosis and I agree that it exists. But what do you expect people to do who feel that something is wrong that doctors aren't picking up, or haven't yet picked up? If you take a look around the internet you will see plenty of people who swear up and down that something is wrong that doctors haven't been able to detect or understand. I'm sure many of them are nuts, but I wouldn't be so dismissive either.

Quote:
I think you have some sexual issues which need to be addressed. You are focusing too much on your bladder, voiding your bladder, sensations in your bladder, erectile problems, etc. You are to the point now where you worry about DRINKING. This is dangerous. Drinking fluids will NOT cause these problems, nor will NOT drinking fluids causes these problems.
All I can say is that I don't think I have any sexual issues. I've never been molested, I don't feel guilty about sex, I'm ok with how I look, I'm not confused about my sexual orientation. I'm sure that it's technically possible to have sexual issues and not even be aware that they exist, but how can I respond to that? I just know that I am very confident that this is not a mental thing.

Quote:
Please post more details -- I am especially interested in hearing about how you define erectile difficulty

It's not that I disbelieve you -- but I do think you are possibly looking in the wrong direction for the answers to many of your complaints. I believe you have a few problems that could benefit from medical attention and other issues that need to be addressed by some counseling.

Let's take care of all of these things NOW, so you can become a healthy, active, happy adult, OK?

I'm on your side here. Just because I'm telling you things you don't want to hear doesn't mean I don't CARE
I appreciate your reply and I hope you reply again. I could probably even go into more detail if need be. It may take a few back and forths to fully explain everything.

Quote:
The docs cannot find anything wrong with you -- and you've presented to many docs with various specialties. The tests have come back CLEAN. The tests do not lie.

So let's broaden our perspective here, OK?

Hope to hear more from you soon

 
Old 02-18-2005, 04:54 PM   #10
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exist21 HB User
Re: Help! What is wrong with me?

Feelbad and Aprilpow,
Thanks a lot for the replies. I'll look into the cervical mri thing.

 
Old 02-18-2005, 05:22 PM   #11
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exist21 HB User
Re: Help! What is wrong with me?

Moreinfoneeded,

Quote:
Try not to get too discouraged.

You stated that you do not work or go to school...so would this mean your symptoms are significant enough that you; 'cant' work, 'opportunities don't exist', or you are not looking?
My symptoms are significant enough that I can't. Is has nothing to do with opportunities not existing or not looking. I do some work for my parents, especially my dad, just to avoid feeling completely useless (I hope that doesn't sound self-loathing, lest that's evidence of neurosis and hence the cause of all my problems). I am certainly not, however, looking for an excuse to be a bum. I would be absolutely thrilled to be healthy enough to go back to school or work. When I was healthy I would complain about work or school, whereas now I would feel lucky just to be doing either one of those activities.

Quote:
What activities if any do you do in this spare time? Walk, Ride Bike, Play video games, Watch TV.?
What foods are you eating?
Activity and Food have a significant affect on how our bodies function and how we feel.
I take walks when I feel well enough to. Riding a bike would be too strenuous, although I used to love riding my bike. I help my dad out with some things. Sometimes I read, but it's often difficult because of the mental cloudiness. I watch TV sometimes, but not too much. I am a pretty healthy eater, but when I feel really bad my appetite disappears.

Quote:
Becareful with what you are seeking as some people fall into a trap of 'looking for a problem' rather than dealing with the problem.
I'm not looking for problems. As I wrote earlier, I was looking away from the problems for a long time. It wasn't until I became very sick that I woke up and realized that most of them were probably connected. I don't really know how to deal with the problem because I don't even know what the problem is. As you can imagine, it's all very depressing. As ScruffyGuy said, imagine between 21 and having trouble getting a solid erection. It's very difficult to deal with. But I want to stress that any depressing feeling I have, is a result of these problems and not the cause (at least I'm very confident that's the case).

Quote:
Dealing with it will be some of the following;
i) asking questions - which you are doing,
ii) narrowing down the instances and tracking events/situation before each symptom occurs,
iii) writing down observations - these will need to be decifered in a clear manner in order to communicate with any physician,
iv) search for various information to eliminate the major concerns - since you've had tests done; those can be scratch off, or parked for now.
v) accept things as they are and do whatever you can with what you have. day-by-day, but still be aware of your body.
Yes, I've been doing these things ever since I started to feel really bad. It's difficult communicating all of these things to a physician. And I'm very aware of the fact that I probably seem crazy to them.

Quote:
P.S. The thoughts on the disc is plausible; good to check out. Dont' forget to document what you can, but do not allow this to run your life.

Though some of those comments already shared may sound judgemental, they shouldn't. The reality is, people perceive information differently from what is shared. Doctors usually try to do their best to understand, however, they are not always the best listeners, and we ourselves are not always the best communicators.

Good Luck
Thanks. I appreciate it.

 
Old 02-18-2005, 06:31 PM   #12
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antoinettev3 HB User
Re: Help! What is wrong with me?

Has your kidney function been tested?

It sounds like you might need to find another physician who is willing to find an answer for you. In a young man diminished blood flow to the penis is not considered normal and there should be an explanation for it.

The fatigue and exercise intolerance can be caused by numerous conditions. What is most curious is the bloodshot eyes and intolerance of fluids which leads me to think that you're not processing fluids properly and that might be throwing your electrolytes off.

Do you know what bloodwork has been done that has come back "normal"? The typical chem panel and cbc is not going to turn up anything that would be considered more obscure.

Your symptoms are very interesting and I get the feeling that this really isn't anything in your head or even being exacerbated by worry or fear. There are a lot of people out there who freak out over far less.

You need to find a physician who will not just brush these symptoms off. A man your age should be enjoying an active, healthy sex life as well as being able to engage in a lot of physical activity. It's not like your 70 years old where a lot of these problems might be considered typical.

Good luck to you and I hope that you will be able to find not only a diagnosis but a succesful treatment. Please let us know how you're doing.

Sincerely,
Antoinette

 
Old 02-19-2005, 04:43 PM   #13
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ScruffyGuy HB User
Re: Help! What is wrong with me?

OK, bud. Let's talk.

First, thank you for all the additional information. It was very helpful.

That being said, I sure don't have a definitive answer for you, but that's OK -- online message boards are a great place to find a jumping point but aren't very suitable for diagnosis anyway. There's a few things we should focus on here...

First, I would still strongly suggest you seek some counseling. This is nothing to be ashamed of and could come in very handy as you work toward getting a proper diagnosis. Do understand that I never believed all your problems were psychosomatic -- I stated that the first time I responded here. So let's assume that NONE of your problems are psychosomatic. Counseling is still a great idea. When someone is going through such a difficult period in their life, when their health is causes problems and there seems to be no explanation, it is not only frightening and confusing, but there is lots of stress, anxiety, possible depressing, feelings of worthlessness, boredom from being removed from normal activities, etc. It can't hurt at all to have an objective sounding board in the form of a counselor. Do keep this in mind as you continue to work on your situation. Seeing a counselor doesn't mean you are "crazy," but I think you know that.

I can tell you're a smart kid. Sorry, you're a "kid" to me -- I'm almost twice your age! You write well, you express yourself clearly -- you're no dummy. So some of the following stuff is not going to be anything new to you -- but I think it is worth discussion just the same. Sometimes it helps bolster our confidence and courage when we hear someone else say the same things we have been thinking all along...

I agree with Antoinette's recent post -- you need to have your kidney function tested. I would also recommend liver function while you're at it. She's right: a standard CBC isn't going to provide the necessary information. You need more specific tests. And you need them ASAP!

But before we get into a few other things of a medical nature, let me say this:

It is IMPERATIVE that you take an even more active role in your own health care. It seems as if you have been doing a good job of getting started on this, but there's much more to it. Lots of folks often listen to what a doctor says (in your case, the docs aren't saying much at all) and then just leave it at that. Doctors can be intimidating -- and sadly, some of them can be arrogant and even ignorant when it comes to issues requiring some degree of sympathy. It is necessary for a physician to distance himself or herself from a patient to a degree, but some take this to an unacceptable extreme.

If you had an engine problem with your car and took up with a mechanic who clearly had no idea what was wrong, you'd certainly go somewhere else! Remember, medicine is also a BUSINESS and YOU are the paying customer! You have every right to seek further opinions and to ask for referrals to the specialists you need!

I recently needed a minor out-patient, in-office surgical procedure. I met with one surgeon who didn't answer my questions and in fact, seemed annoyed that I had the nerve to even ASK these questions. He mumbled, he evaded and avoided, he left me guessing and instilled NO confidence whatsoever. And that was IT for this guy. I fired him and went to another surgeon. YOU can do the same at any time! Remember, it's YOUR health here.

So get ready to sometimes have to do battle. Always be polite, show respect, but also you should be treated like a human being and your questions should be taken SERIOUSLY and your complaints should not be dismissed or worse -- ignored. OK? Cool.

Now, get yourself a referral to a nephrologist who will check on your kidneys. You may need to get that specialized blood work done first to find out if there is even a need for a nephrologist. That's fine -- get it done. Start here.

You may also wish to see a cardiologist and/or a hematologist. Something's going on with your blood circulation, as is evidence by the erectile difficulty and the purple-blue hands. This needs to be addressed. I strongly suspect these symptoms are certainly related.

The timeline you provided was excellent -- give this history to the docs, too. Do not think that I am suggesting that you have been building new illnesses based upon the very first thing that happened. I wanted to know the order because this is an important thing to know. Also, to some degree, I still believe it is possible that some of your symptoms are being exacerbated by the constant worrying and fear. You can chirp all you want about not being depressed or having had a great life -- I believe you. But there is no way your current situation is NOT having an impact on you right now. Clearly, you would not be here seeking advice if this were not the case.

It is impossible here to detail all the possible diseases and condition which could be part and parcel of your chief complaints. I suspect you are already aware of most of them anyway. But DO bring up these possibilities to your doc, even if they are remote.

I'm sure you know that Chronic Fatigue Syndrome can bring about a lot of the stuff you've mentioned. I'm sure you also know that it manifests differently in many people -- and is often accompanied by OTHER conditions as well. This is seen more in women but it is certainly found in men, too. CFS is a controversial topic and it is highly difficult to diagnose. You know this. But it certainly is worth being ruled out.

The same can be said for Lyme Disease -- remote chance of this, but worth consideration. Lyme is also controversial -- just read the posts about it and you'll see MASSIVE frustration from individuals who have it when dealing with the medical community who ignores their symptoms.

We can ignore the more exotic diseases at this time, I think. The focus should be on your kidneys, your blood, your liver.

A word about erectile dysfunction in general, if I may: ED most certainly has physical causes -- and I am familiar with the torsion device you had the unpleasant experience of meeting -- but ED is also very closely related to psychological issues, EVEN WHEN PHYSICAL CAUSES ARE RECOGNIZED.

Man to man, dude: when your penis is on the fritz, it is DEEPLY disturbing. Doesn't matter if your family is supportive. Doesn't matter if your girlfriend understands. This is BAD MOJO for the male ego and male psyche. A vicious cycle is often very problematic: a physical issue causes some problems -- you think about that -- you have more problems -- you think about it more -- the problems get worse -- you think -- MORE troubles -- more worry, etc. It doesn't seem to have an end. DO NOT dismiss the psychological component here, even though it seems likely there is a physical issue as well, your mind cannot help but make that EVEN WORSE.

Do not attempt Viagra at this time until you have the full approval of a physician who is certain you can tolerate it. But it's worth keeping in mind for the future, AFTER you have a diagnosis and are working on a solution. Your loins might need a little encouragement at that time, you know?

I have never, ever heard of the problem you are having with fluids and bloodshot eyes. No one here suggested this was something you hallucinated or made up -- but it IS wild. I've been working on online message boards since... well, since about the time Al Gore supposedly invented the Internet when message boards consists of amber and green screens displayed on CGA monitors reached via a dial-up connection at a speed of about 1,200 baud. That's a LONG time. I've never heard of anything like this.

The feeling you get which makes you uncomfortable, being unable to void your bladder and the problem with your eyes -- this is troubling, yes. But you mentioned that you sort of fiddle around and gauge your symptoms by not drinking -- in the same breath you mention you know this is not a good idea. Dude! Stop this! Dehydration is a SERIOUS thing -- you cannot fool around that way. Please drink normally, even if it makes you uncomfortable. Your body MUST have fluids and if Antoinette is correct (and I think she is) that you electrolytes are all out of whack, limiting your fluid intake is the WORST thing you can do!

A quick word about electrolytes... I once knew an elderly lady... sweet woman. She'd tell a dirty joke now and then, but was generally a kind soul. After a diabetic attack her electrolytes were thrown for a loop. She was OUT of it completely. She was swearing a blue streak and telling her children she hated them. We were all terrified. It took two days but the docs finally got her balanced out. She returned to normal immediately and has never had this episode repeat.

Your body is a collection of systems. This you know. It is in delicate balance and harmony. SOMETHING is messing with that in your case. Please make sure you don't contribute to further problems. Eat and drink normally, OK?

One last "nag" to re-emphasis the most important point here: YOU are in charge of the docs. If they blow you off -- kiss them goodbye. Do not be intimidated. Do not accept "I don't know" or "the tests are all fine" as a final answer. Clearly, SOMETHING is wrong.

The good news is that the STANDARD tests ARE fine. That is no guarantee, but it could mean that you might just be looking for the proverbial needle in the haystack and when that is finally located, you could very well see yourself get back to normal.

Let us know how things turn out. I'd start on Monday morning and make calls to get appointments ASAP.

Get busy!

Good luck.

 
Old 02-19-2005, 10:45 PM   #14
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Join Date: Feb 2005
Posts: 24
exist21 HB User
Re: Help! What is wrong with me?

Antoinette,
Thank you so much for your reply. It is very kind of you.

I'm pretty sure that my kidney function was tested and everything came back okay. I'm not sure what bloodwork came back normal, but my doctor gave me the impression that it was fairly exhaustive. I could find out, though, just to be certain. I do know that I was tested for Lymes disease and the results came back negative.

About the decreased blood flow to my penis. After the test was done, the doctor said that ordinarily he would have thought that my problem was psychological, but the results of the test made him think otherwise. But he said that although erectile dysfunction in young men is very rare, sometimes it just happens. Needless to say, this didn't make me feel very good.

Do you think ScruffyGuy's advice about possibly seeing a cardiologist and/or hematologist makes sense because of the ED and the issue with my hands? (I'm not doubting you, ScruffyGuy, I'm just curious what Antoinette thinks.)

I hope to hear from you again.

 
Old 02-20-2005, 12:58 AM   #15
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Posts: 24
exist21 HB User
Re: Help! What is wrong with me?

My reply was broken into two posts again.

Quote:
OK, bud. Let's talk.

First, thank you for all the additional information. It was very helpful.
No problem, I'm the one who is being helped

Quote:
That being said, I sure don't have a definitive answer for you, but that's OK -- online message boards are a great place to find a jumping point but aren't very suitable for diagnosis anyway. There's a few things we should focus on here...
One of the nice things about a message board is that I finally feel like I can fully explain myself. I haven't always felt like I've had the time to explain everything to my doctors.

Quote:
First, I would still strongly suggest you seek some counseling. This is nothing to be ashamed of and could come in very handy as you work toward getting a proper diagnosis. Do understand that I never believed all your problems were psychosomatic -- I stated that the first time I responded here. So let's assume that NONE of your problems are psychosomatic. Counseling is still a great idea. When someone is going through such a difficult period in their life, when their health is causes problems and there seems to be no explanation, it is not only frightening and confusing, but there is lots of stress, anxiety, possible depressing, feelings of worthlessness, boredom from being removed from normal activities, etc. It can't hurt at all to have an objective sounding board in the form of a counselor. Do keep this in mind as you continue to work on your situation. Seeing a counselor doesn't mean you are "crazy," but I think you know that.
I'm grateful for the advice and I'll definitely give it some thought.

Quote:
I can tell you're a smart kid. Sorry, you're a "kid" to me -- I'm almost twice your age! You write well, you express yourself clearly -- you're no dummy. So some of the following stuff is not going to be anything new to you -- but I think it is worth discussion just the same. Sometimes it helps bolster our confidence and courage when we hear someone else say the same things we have been thinking all along...
Thanks for the compliments. You and Antoinette have both given me a little courage to keep pressing on.

Quote:
I agree with Antoinette's recent post -- you need to have your kidney function tested. I would also recommend liver function while you're at it. She's right: a standard CBC isn't going to provide the necessary information. You need more specific tests. And you need them ASAP!
As I told Antoinette, I'm pretty sure I've had both my kidney and liver function tested already.

Quote:
But before we get into a few other things of a medical nature, let me say this:

It is IMPERATIVE that you take an even more active role in your own health care. It seems as if you have been doing a good job of getting started on this, but there's much more to it. Lots of folks often listen to what a doctor says (in your case, the docs aren't saying much at all) and then just leave it at that. Doctors can be intimidating -- and sadly, some of them can be arrogant and even ignorant when it comes to issues requiring some degree of sympathy. It is necessary for a physician to distance himself or herself from a patient to a degree, but some take this to an unacceptable extreme.

If you had an engine problem with your car and took up with a mechanic who clearly had no idea what was wrong, you'd certainly go somewhere else! Remember, medicine is also a BUSINESS and YOU are the paying customer! You have every right to seek further opinions and to ask for referrals to the specialists you need!

I recently needed a minor out-patient, in-office surgical procedure. I met with one surgeon who didn't answer my questions and in fact, seemed annoyed that I had the nerve to even ASK these questions. He mumbled, he evaded and avoided, he left me guessing and instilled NO confidence whatsoever. And that was IT for this guy. I fired him and went to another surgeon. YOU can do the same at any time! Remember, it's YOUR health here.

So get ready to sometimes have to do battle. Always be polite, show respect, but also you should be treated like a human being and your questions should be taken SERIOUSLY and your complaints should not be dismissed or worse -- ignored. OK? Cool.
It feels good to hear you say this. I've been telling these things to myself, but it's not quite the same as hearing it from someone else.

Quote:
Now, get yourself a referral to a nephrologist who will check on your kidneys. You may need to get that specialized blood work done first to find out if there is even a need for a nephrologist. That's fine -- get it done. Start here.
If my kidneys have been tested already, do you still recommend seeing a nephrologist?

Quote:
You may also wish to see a cardiologist and/or a hematologist. Something's going on with your blood circulation, as is evidence by the erectile difficulty and the purple-blue hands. This needs to be addressed. I strongly suspect these symptoms are certainly related.
I was sort of wondering why my doctor hasn't recommended me seeing someone about my blood circulation. I wasn't sure who specialized in that, though. Who would it be more appropriate to see first, a cardiologist or a hematologist?

Quote:
The timeline you provided was excellent -- give this history to the docs, too. Do not think that I am suggesting that you have been building new illnesses based upon the very first thing that happened. I wanted to know the order because this is an important thing to know. Also, to some degree, I still believe it is possible that some of your symptoms are being exacerbated by the constant worrying and fear. You can chirp all you want about not being depressed or having had a great life -- I believe you. But there is no way your current situation is NOT having an impact on you right now. Clearly, you would not be here seeking advice if this were not the case.
Do you think it would make sense for me to write all this up and just ask them to read it? I always feel acutely aware of the time in a doctor's office and sometimes I get the feeling like it would take more time to explain all of this then whatever the alloted time for one patient is. It seems like most of my doctor's visits haven't lasted very long. Of course, I know most of them are on tight schedules.

Also, I haven't felt like the doctors I've seen have asked me very many questions. When I present them with what I've been experiencing, especially after the bloodwork has come back normal, I certainly understand that they must be skeptical. But I also think that my story would perhaps seem more credible if I was given the time to explain everything, which isn't an easy thing to do. Even on the internet it still takes me a while.


Quote:
It is impossible here to detail all the possible diseases and condition which could be part and parcel of your chief complaints. I suspect you are already aware of most of them anyway. But DO bring up these possibilities to your doc, even if they are remote.

I'm sure you know that Chronic Fatigue Syndrome can bring about a lot of the stuff you've mentioned. I'm sure you also know that it manifests differently in many people -- and is often accompanied by OTHER conditions as well. This is seen more in women but it is certainly found in men, too. CFS is a controversial topic and it is highly difficult to diagnose. You know this. But it certainly is worth being ruled out.

The same can be said for Lyme Disease -- remote chance of this, but worth consideration. Lyme is also controversial -- just read the posts about it and you'll see MASSIVE frustration from individuals who have it when dealing with the medical community who ignores their symptoms.

We can ignore the more exotic diseases at this time, I think. The focus should be on your kidneys, your blood, your liver.
I was tested for Lymes and everything turned out fine. I've though about chronic fatigue and that seems unlikely because I haven't seen anything mentioned about erectile dysfunction or urinary problems, but I'm not a doctor.

 
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