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Old 02-20-2005, 02:04 AM   #16
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Re: Help! What is wrong with me?

Quote:
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.
I agree, it IS deeply disturbing. I'm sure I don't even need to tell you. I'll keep in mind the psychological component.

Quote:
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've already tried viagra. It gives me a better erection, but it's still not what it used to be. And I still only get an erection if I initiate it with my hand. When I was 14, just thinking about sex would give me an erection.

Quote:
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.
I'm not a hundred percent positive about the fluids and the bloodshot eyes, but I'm nearly certain. I didn't really start regulating my fluids until about a year ago. Until then, although I never felt "good", sometimes I would feel a lot worse and I could never pinpoint why. When I felt worse, my eyes would become extremely bloodshot. And I'm nearly certain that it has to do with how much fluid I have in me because when I'm feeling really awful if I stop drinking fluids I will slowly feel better as times goes by and I empty myself more and more. But I only experimented with my fluid intake AFTER I had already been feeling bad and noticed my eyes were bloodshot. Like I said above, I would sometimes feel suddenly worse and I couldn't figure out what was causing it, it took me a while to connect it to drinking. What I've learned to try and do, is drink a small amount of fluids, urinate, drink some more, urinate, etc., as opposed to drinking a big glass of water at a time (which I'd certainly prefer).

Another reason I try to limit how much I drink before urinating, is that for some reason it feels a little easier to urinate with less fluid in me. I NEVER feel like I urinate normally. Not much urine comes out at a time, it's not a powerful stream like it used to be, there's some hesistancy where I feel like I have to go but I sort of have to wait a minute to actually go (I've heard my dad urinate through the bathroom door and it's been a long time since I can remember urinating like that). With more fluid in me, it seems to exacerbate these problems.

I really don't like having to limit how much I drink. It's not something I enjoy doing. I wish I felt like my body could handle drinking large amounts of fluid at a time. Sometimes, though, I get sick of not drinking as I please, and I'll try to drink more than I usually do and I usually end up not feeling good. This is a sort of unintentional experiment. I could intentionally experiment -- it would be easy enough -- by purposely drinking a whole lot of water and seeing what happens, but I'm almost positive I would feel terrible and have a really bad headache, so I guess I'm restrained by the fear.

About the bloodshot eyes. There are varying degrees of blood-shotness (if that's a word). But at its worst, they are VERY bloodshot, especially for some reason my right eye. I should probably try and take a photo of it to show it to a doctor, which I've been thinking about doing, same with the hand thing, too.

I'm not sure if I mentioned this already, but both the bloodshot eyes and urination difficulties seem get worse at night before I go to sleep. Not sure if that says anything.

Quote:
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
I'll write some more tomorrow. I want to add some details about the ED. But thanks again. You have been very helpful and I hope you keep replying.

Last edited by exist21; 02-20-2005 at 02:12 AM.

 
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Old 02-20-2005, 09:03 AM   #17
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Re: Help! What is wrong with me?

I have been following this thread as I am getting useful information on it as a spectator. I have a question for Scruffy Guy and Antionette:

I know you said CBC and basic chem panel wont show much. What other specific blood tests would you recommend? (besides the LFT and Lyme you suggested)

Thanks!! You both are so amazing to help this young man the way you are.

 
Old 02-20-2005, 02:56 PM   #18
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Re: Help! What is wrong with me?

There is definitely something wrong with you. You're too young to have all these problems, especially the extreme fatigue and urinary problems. Doctors sometimes shrug people off as "mental" when they can't find anything wrong.
I don't think Scruffy was fair to you. His "tough love" essay was just telling you to buck up, be a man. You don't need a kick in the butt; you need help and you know it, you've looked for it, and you haven't found it.

I wish I had some insight as to what's wrong with you but I don't. Keep surfing the web. You might start by reading about candida. Try a colon cleanse and/or a liver cleanse. Try a parasite cleanse. You can buy these at health stores; I can't vouch for their effectiveness but they're there, and reasonably priced. Try a chiropractor, homeopath, naturopath, nutritionist, acupuncturist. Look up "network chiropractic" which isn't really like regular chiropractic. It's the most underrated health treatment around. Read natural health books. Be aggressive. If the anxiety is eating at you, by all means see a psychologist or psychiatrist. Be tenacious; there's an answer out there.

P.S. I get the "purple hands" thing sometimes - I think it's because of pinched ulnar nerves. My arms are both crooked at the elbow and the nerves overlapping them get "squeezed". Once this caused some mild numbness in my hand; otherwise it causes no problems whatsoever (except funny-looking arms).

 
Old 02-20-2005, 03:03 PM   #19
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Re: Help! What is wrong with me?

[QUOTE/]This online passion to self-diagnose is a HUGE problem these days.

[/QUOTE]

I disagree slightly. The online passion to self-diagnose is the SYMPTOM of a huge problem - the fact that doctors aren't helping us.

 
Old 02-20-2005, 04:38 PM   #20
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Help! What is wrong with me?

Hi exist21. I am sorry you are dealing with so much. I know it is frustrating to be so sick and not know what is wrong. I highly recommend that you be re-evaulated for Lyme disease by a Lyme knowledgeable doctor. Lyme disease is a multi-system bacterial infection. It can cause many seemingly-unrelated symptoms. You have had other things checked out which is important.

It is very important to see a knowledgeable doctor because no test is completely reliable. From what I understand the ELISA or titer test is the least reliable and the one most doctors run first. Do you know which test(s) were run?

Even the CDC who is behind the times regarding Lyme disease states that a negative test does not rule out Lyme. Many doctors do not understand Lyme and treat with outdated protocols. Lyme disease is the second fastest growing infectious disease in the US after AIDS. This is very significant yet nothing is being done to educate the public and medical community. It is in every state. Besides Lyme disease, ticks can transmit several co-infections which can cause their own set of symptoms. Many people who have Lyme disease are co-infected so it is important to be tested by a Lyme reputable lab.

If you tell me where you are located, I will give you the name of the closest knoweldgeable doctor to you that I know of. For more information on tickborne illnesses, see the "Lyme Disease Information" post on the Lyme disease board at this site.

Do not give up. You will find out what is wrong.

 
Old 02-20-2005, 09:03 PM   #21
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Re: Help! What is wrong with me?

I know you said that your kidneys have been tested, but my husband had kidney failure a few years back, and some of his symptoms were the same as yours. With the urinating thing, and feeling sick if he drank a lot. What was happening to him, was that his kidneys weren't processign the fluid, so it was just backing up in his system, and poisioning him, sort of like a toilet that backs up. And the more he drank the worse he felt casue it just backed up more. He also had the red eyes thing, although his was under the eyes. It is possible to drink too much, however you would have to drink gallons and gallons for someone with normal functions to "overdose" on water. Also, though if you have gotten dehydrated, you don't go to the bathroom much, and even if you are drinking, it isn't always enough to replinish it. And dehydration can cause all kinds of nasty side effects! I don't have any suggestions for your hands turning colors, you said you had been tested for anemia, severe cases can decrease blood flow to your extremites, like feet and hands, I'm not sure if that would include a penis or not though! Hope you find out something soon!

 
Old 02-20-2005, 09:47 PM   #22
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Re: Help! What is wrong with me?

Exist21,

At this point I would say a vascular surgeon might be more appropriate then a cardiologist since you have absolutely no complaints about your heart or it's rhythm.

A hematologist would be more focused on your blood chemistry which might not be a bad thing but he probably won't be able to give you much insight into the whole ED thing.

I was kicking around some ideas about possible mercury, lead or arsenic poisoning but you don't exhibit the classic symptoms of this type of problem. Still, what kind of water do you drink (bottled, tap, well, city?). What do you drink it from? Just as a lark you might want to test your cups, plates, etc. for lead content. This is probably a stretch but the test kits are cheap and you might be surprised by what you find.

What types of doctors have you seen so far? Your primary care physician, is he or she an internist or a GP? What part of the country are you in? Are you near a major metropolitan area?

It would be good idea for you to make up a list of your symptoms with as short a description as possible to present to your doctors when you see them. Most are notorious for skimming things rather then reading them so if you have something typed up with bullets and short sentenced descriptions you stand a better chance of getting them to read most of the words. This way they can go down the list and ask more detailed questions of you. Kind of like writing a resume.

I wish I could be of more help. Scruffy Guy makes some very valid points with taking charge of your health and realizing that the doctors are working for you so don't be shy to demand some satisfaction or at the very least more then just a shrug of the shoulders and a "that's just the way it is". No 21 year old should put up with that for an answer when you have your whole life ahead of you.

There is a commercial website, which I cannot post here, that allows you to answer medical questions and have them come up with a diagnosis. You might want to try something like that out to see what they may come up with. It might help point you in the right direction. Do a ****** search for medical self diagnosis.

I hope this helps. If there's anything else that you'd like ask please feel free and keep us posted.

Sincerely,
Antoinette

 
Old 02-21-2005, 12:40 AM   #23
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exist21 HB User
Re: Help! What is wrong with me?

Quote:
There is definitely something wrong with you. You're too young to have all these problems, especially the extreme fatigue and urinary problems. Doctors sometimes shrug people off as "mental" when they can't find anything wrong.
I don't think Scruffy was fair to you. His "tough love" essay was just telling you to buck up, be a man. You don't need a kick in the butt; you need help and you know it, you've looked for it, and you haven't found it.
Thanks for writing. I understand that doctors must skeptical, especially considering that my bloodwork has come back normal and that the symptoms I'm describing don't seem to fit anything typical. But it is very frustrating having doctors suggest that it is psychological when you know in your heart that it isn't. I try to be patient and respectful and put myself in their shoes, but it can be tough. The whole thing left me kind of demoralized, and that's why it's so refreshing to have someone believe me, even if it's a stranger over the internet. So thanks.

Quote:
I wish I had some insight as to what's wrong with you but I don't. Keep surfing the web. You might start by reading about candida. Try a colon cleanse and/or a liver cleanse. Try a parasite cleanse. You can buy these at health stores; I can't vouch for their effectiveness but they're there, and reasonably priced. Try a chiropractor, homeopath, naturopath, nutritionist, acupuncturist. Look up "network chiropractic" which isn't really like regular chiropractic. It's the most underrated health treatment around. Read natural health books. Be aggressive. If the anxiety is eating at you, by all means see a psychologist or psychiatrist. Be tenacious; there's an answer out there.
I'll check all this stuff out. Thanks.

Quote:
P.S. I get the "purple hands" thing sometimes - I think it's because of pinched ulnar nerves. My arms are both crooked at the elbow and the nerves overlapping them get "squeezed". Once this caused some mild numbness in my hand; otherwise it causes no problems whatsoever (except funny-looking arms).
When I first told my doctor about the purple hand thing, she said that maybe I just pinched a nerve or something, like your saying. That was before my right hand started doing it and before I became sick. I don't know, I guess that could be what it is, I really have no clue. I don't mind that they change color. It only bothers me insofar as it's related to a bigger problem (if it is related). When my left hand first started to change color, I was just sort of amused and thought it was neat. It wasn't until my right hand started doing the same thing when I became sick that I became concerned.

Last edited by exist21; 02-21-2005 at 12:50 AM.

 
Old 02-21-2005, 02:05 AM   #24
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Re: Help! What is wrong with me?

I was away today and now I'm really tired, so I didn't get a chance to reply to everyone and thank them and answer everyone's questions. I also wanted to describe some more things and add some details, which I'll do tomorrow. Thanks again everyone for taking the time to reply and being so kind. I hope you keep checking back.

 
Old 02-21-2005, 06:23 AM   #25
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Re: Help! What is wrong with me?

Hi there exists21

First, I would like to say that I am sorry you are going through all of this. I know how frustrating it can be to not know what is wrong with you. From reading some of your posts, I just wanted to ask if you had gotten tested for kidney stones or even bladder stones? I am just trying to throw a few more things to look at.

I'm not sure where the purple color of your hand is coming from, but I do know extreme exhaustion can be caused from a low or high thyroid function. Just something else to look at. When you say you are exhausted, how long do you sleep?

Just a side note: My husbands friend started having problems with his hip. It would get numb off and on, but he didn't think much of it. It didn't bother him too much at the time. Well, the numbness started going lower and lower, until finally he was almost dragging his foot. (Men are so stubborn sometimes) Anyway, he went in to see the doctor and it turned out to be a disk in his back that was putting pressure on a nerve. It's just better to have these things checked out, especially when you have more than one problem.

I hope you feel better soon

Chantel

 
Old 02-21-2005, 06:08 PM   #26
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Re: Help! What is wrong with me?

I've got a book called "Symptoms, Causes & Cures". It's not too detailed but I looked up some of your symptoms. If you have the urge to urinate and hardly anything comes out, it's probably related to your kidneys, urinary tract, prostate or bladder. Since you're so young, it's probably not your prostate. It may be that your bladder is empty but something's signalling you (falsely) that it's full. Infection, maybe, or pressure from surrounding organs.

Oh, and if you're taking diuretics (water pills), caffeine, or Nutrasweet - STOP! These are BAD for urinary conditions. Since you can't drink fluids very well, make sure the ones you do drink are healthy. Plain water, veg. or fruit juice - NO soda, coffee, tea or alcohol. At least, not until you're WELL.....!!

 
Old 02-21-2005, 09:39 PM   #27
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Re: Help! What is wrong with me?

Exist21, I would suggest you see a nephrologist (a kidney specialist). Some of the blood tests that might prove helpful for diagnosing improper kidney function would be Creatinine, BUN (blood urea nitrogen) and calcium level. Have you had some or all of these tests? They should have been part of a CMP but make sure. Also, have you been tested for auto immune problems in general. I believe the ANA test (anti-nuclear antibodies) would be helpful in that area. If you test positive for antibodies, then further testing would determine the specific targets (antibodies attack the body by mistaking healthy cells for foreign cells such as would be present in a virus). They can run amok and cause an array of autoimmune problems. Good luck and keep us posted.

 
Old 02-21-2005, 11:58 PM   #28
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exist21 HB User
Re: Help! What is wrong with me?

Thanks for replying. I was tested twice for Lyme disease. I'm not sure the name of the first test, but supposedly it was less reliable than the second one, which I remember having the word "blot" in its name. I just did a search and Western Blot came up and that sounds familiar, so I take that's what it was.

I live in southern Pennsylvania near the border of Delaware and I'd appreciate hearing about the closest knowledgable doctor. If you need me to be more specific about where I live, perhaps I could e-mail you, if that's ok?


[ please carefully review the posting rules - no emails ]

Last edited by moderator2; 02-22-2005 at 08:07 AM. Reason: please delete long quotes

 
Old 02-22-2005, 12:22 AM   #29
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Re: Help! What is wrong with me?

Quote:
Originally Posted by cattieos
I know you said that your kidneys have been tested, but my husband had kidney failure a few years back, and some of his symptoms were the same as yours. With the urinating thing, and feeling sick if he drank a lot. What was happening to him, was that his kidneys weren't processign the fluid, so it was just backing up in his system, and poisioning him, sort of like a toilet that backs up. And the more he drank the worse he felt casue it just backed up more. He also had the red eyes thing, although his was under the eyes. It is possible to drink too much, however you would have to drink gallons and gallons for someone with normal functions to "overdose" on water. Also, though if you have gotten dehydrated, you don't go to the bathroom much, and even if you are drinking, it isn't always enough to replinish it. And dehydration can cause all kinds of nasty side effects! I don't have any suggestions for your hands turning colors, you said you had been tested for anemia, severe cases can decrease blood flow to your extremites, like feet and hands, I'm not sure if that would include a penis or not though! Hope you find out something soon!
Thank you for taking the time to reply. I definitely feel like I have trouble processing fluids but I'm pretty sure my kidneys were tested. Perhaps Antoinette can tell me if there's more involved in processing fluids than just the kidneys. I don't know anything about how this stuff works. Also, while I don't doubt the tests, is there any way that there could be something wrong with my kidneys that isn't picked up by them? Are the tests definitive? I had assumed they were. I would have thought that the not-processing-fluids-properly thing would make things easier to diagnose; I don't know why, but I figured that somehow that must narrow it down a bit. All of my problems bother me, but it is extremely annoying to not feel like I can drink as much as I want. I wonder if there is a medical test that can actually verify that my body has difficulty processing fluids. Antoinette, what do you think?

So the area beneath your husband's eyes was red? The area beneath my eyes can get pretty dark sometimes, although to a certain extent I'm sure it's normal and I know everyone is different. But I also believe that it has something to do with being sick. I remember how before I realized that I was sick--but, in retrospect, I can see that I was sick even then-- after exercising it would seem like I had two black eyes. I'm sure for some people that may be normal, but I really don't think it was normal for me, because I have always been active and that never happened before.

Quote:
Also, though if you have gotten dehydrated, you don't go to the bathroom much, and even if you are drinking, it isn't always enough to replinish it. And dehydration can cause all kinds of nasty side effects!
Yeah, I'm sort of getting a lot better at telling whether I'm dehydrated or whether I've had too much to drink. What has happened, is that I'll drink too much, feel bad, and then realize that I need stop drinking and then, if I take it too far, I get somewhat dehydrated. When I start drinking again and up to a certain poin I don't feel bad, what has happened a few times, before I realized I was dehydrated, was I thought somehow I had improved a little bit, so I become more free with how much I drank, which of course ended up making me feel really bad again. But I'm kinda at the point where I'm better at judging how I'm feeling and whether I'm hydrated or dehydrated. Although sometimes I just get frustrated at not being able to drink as much as I want to and I'll say to hell with it and drink more than I feel like I should.

 
Old 02-22-2005, 12:31 AM   #30
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Re: Help! What is wrong with me?

I don't know what all kinds of tests are done to test your kidney functions in something like this, it was before he and i got together. I would think they would have tested you for that but it's possible they didn't. I agree with whoever said get checked for an autoimmune disorder, they can affect blood flow, and cause problems with extremities also, and they can cause other weird side effects. They can also make you really really tired. I have ulcerative colitis, i have for almost 6 years, and I am 27, and tehre are times I literally am so tired, i cannot get up! And the blood flow to my hands isn't right and they get messed up, but i am also anemic, so it could be a combo. good luck!

 
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