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Old 02-22-2005, 01:10 AM   #31
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Re: Help! What is wrong with me?

Quote:
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.
Ok. Would a nephrologist make sense, even if my kidney's have already been tested, like I think they have? Tomorrow or the next day, I'm going to try and get a list from my doctor of all the tests I've had, so I can share them with everyone.

Quote:
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.
I mostly drink water out of the refrigerator, which I think has a filter. I used to drink a lot of bottled water. Before that I think I just drank tap water. I drink it from regular glasses or out of plastic cups. I'll try testing my plates and cups, but I'm pretty sure that the plates I'm using now aren't the same ones I was using a couple years ago when I first began noticing problems. But thank you for even taking the time to kick around ideas. Everyone on here has been extraordinarily kind, I wish I could pay everyone back somehow.

Quote:
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?
I'm pretty sure my primary care physician is GP.

The first specialist I saw, I think, was a rheumatologist. This was right after I became very sick for the first time and I was still sort of putting all the pieces together. I did a really poor job of describing all of my history and problems. He said I probably just had a really bad virus and how sometimes a virus can last six months or something. Obviously, I've had problems much longer than six months, but it was my fault for not articulating everything clearly. I had just become sick and I was kind of stunned and I was just waking up to all the problems I had been ignoring for so long. If you think it would be worthwhile to see another one, let me know.

The first urologist I saw was the one who performed the test which showed I had a decreased blood flow to my penis. He sent me to another urologist. This ended up being one of the worst experiences I have ever had with a doctor. He saw me for about a minute and was completely rude. He had me come back again and I underwent -- I forget what it's called -- something "doppler," where he injected my penis with something to induce an erection and then look at my penis with an ultrasound or something, I'm not sure. I'm not even sure he actually administered the test. He didn't answer my questions, and he was rude the entire brief time I saw him.

I just recently saw a third urologist. But I didn't mention the erectile dysfunction, just the urinary problems, and I didn't mention how drinking a certain amount of fluid makes me feel bad either. I wasn't sure whether to tell him or not because I was worried that it would make me seem less credible. I also didn't mention this to the other two urologists either, but that was because I hadn't yet made the connection between drinking and feeling bad. In any case, when I mentioned the urinary problems to the previous two urologists, they didn't really say anything at all. I figured with the third urologist, I would just strictly mention the urinary problems and say nothing of the erectile problems because I had already tried that with the other urologists and it didn't lead anywhere. I thought that maybe just focusing on the urinary problems might lead somewhere. I had a cystoscopy performed and it turned out ok. I was supposed to see him again afterwards, but I haven't yet made an appointment. I was thinking of telling him about the other problems. After the cystoscopy, he gave me a medication called Detrol, which is prescribed for overactive bladder, and told me to see if it helped. It does help a little bit, but not significantly. I'm guessing, although I know I'm not a doctor, that my urinary difficulties are made worse by my muscle twitches but I don't think the twitches are the cause of them. Also, the muscle twitches started after I first had urinary difficulties. The little bit that the Detrol helps probably has to do with reducing the muscle twitches, because it's supposed to relax the bladder or something. I don't know, I'm not a doctor, I'm just speculating, so I'm probably wrong. Anyway, because of the Detrol, I figured I would try and drink more and see if the medication helped, but I still ended up feeling bad, getting a headache, etc.

I saw a neurologist. He performed a couple tests in the office, everything seemed fine. Surprisingly, he witnessed one of my muscle twitches, which isn't easy to do because they're hard to see and they don't last very long, at least in one spot. I had an MRI done and it came back fine.

I also saw a gastroenterologist about the heartburn.


Quote:
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
I haven't done a search for medical self diagnosis, but I will. Thank you so much for your generosity and advice. I hope you keep checking back.

Last edited by exist21; 02-22-2005 at 03:08 AM.

 
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Old 02-22-2005, 02:27 AM   #32
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Re: Help! What is wrong with me?

Quote:
Originally Posted by Chantel2003
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
Chantel, glad to hear from you. I'm not sure if I was tested for kidney or bladder stones, although I know they were never brought up as a possibility. I think thyroid problems were probably tested for too. I'm not sure what I've been tested for, just that my doctor gave me the impression that it was very exhaustive. I should have had a list before I started posting, but I will try to get it within the next couple days so I can be more precise when replying.

Regarding how much I sleep when I'm exhausted, well, I'm not totally sure. But it depends on what you mean by exhausted. I'm always pretty much fatigued and tired, but sometimes it seems to be worse. So for me, exhausted means extra exhausted. In that case, I often sleep over 12 hours. I should probably keep track by writing it down. The most extreme exhaustion I've ever felt occurred around 2 years ago, after the last time I exercised, excluding walks. I can't really remember how long I slept then, although I'm sure it was longer than normal. In general, I think I sleep longer than most people and I often take long naps in the middle of the day.

Thanks for the kind words, Chantel.

 
Old 02-22-2005, 03:12 AM   #33
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Re: Help! What is wrong with me?

Quote:
Originally Posted by kerry1
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.....!!
Wow, what can I say? It was really nice of you to look something up for me. Thank you.

I'm not drinking soda, coffe, tea, or alcohol. I'm always pretty healthy, but it gets pretty tiresome after a while. I really wish I didn't have to always worry about what I'm drinking or eating. Aside from the urinary problems, I have heartburn, which is a pain in the *** because I have to monitor what I eat and there are a lot of foods I like which I've had to cut out.

 
Old 02-22-2005, 03:19 AM   #34
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Re: Help! What is wrong with me?

Quote:
Originally Posted by tcnj_mom
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.
Thanks so much for the response. I'm not sure what specific tests I've had. I'm going to try to get the list from my doctor within the next couple days so I can share with everyone. But as far as I know, I was tested for everything she could think of.

Is there any chance that I could have a kidney problem even if I was tested and the result came back ok? I really do feel like there is something wrong with how I process fluids and from what everyone has said, that seems to indicate the kidneys.

 
Old 02-22-2005, 05:41 AM   #35
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Re: Help! What is wrong with me?

Quote:
Originally Posted by exist21
Chantel, glad to hear from you. I'm not sure if I was tested for kidney or bladder stones, although I know they were never brought up as a possibility. I think thyroid problems were probably tested for too. I'm not sure what I've been tested for, just that my doctor gave me the impression that it was very exhaustive. I should have had a list before I started posting, but I will try to get it within the next couple days so I can be more precise when replying.

Regarding how much I sleep when I'm exhausted, well, I'm not totally sure. But it depends on what you mean by exhausted. I'm always pretty much fatigued and tired, but sometimes it seems to be worse. So for me, exhausted means extra exhausted. In that case, I often sleep over 12 hours. I should probably keep track by writing it down. The most extreme exhaustion I've ever felt occurred around 2 years ago, after the last time I exercised, excluding walks. I can't really remember how long I slept then, although I'm sure it was longer than normal. In general, I think I sleep longer than most people and I often take long naps in the middle of the day.

Thanks for the kind words, Chantel.

Hi again

I asked how long you slept because your thyroid function could be off and sleeping 12 hours or longer sounds like it could be your thyroid. I don't think this could be causing all of your other problems, but maybe it could be something to ask when you get all of your tests back.

I sure hope you find out soon hun Keep posting and letting us know.

Chantel

 
Old 02-22-2005, 08:57 AM   #36
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Lightbulb Re: Help! What is wrong with me?

I had a quick scan through the suggestions, and they all seem to give some good advice. One thing I did not pick up in any replies was the suggestion that you might suffer from diabetes. Many of your symptoms correspond well with the symptoms of Type 2 diabetes, including erectile dysfunction, frequent urination, fatigue etc.

As I haven't read all of the posts in detail, this might have come up. Your tests might have brought up some red lights in this regard as well so it might be ruled out, but in my experience tests are designed to find specific things and often ignores other signs.

So this might be a total misgrab, but it might be worth investigating.

G.

 
Old 02-22-2005, 11:36 AM   #37
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Re: Help! What is wrong with me?

My husband had many of the same problems you mention. His sex drive was off, he had lots of problems with his side, he would get tingly sensations, his arm would go to sleep easily, etc. The doctors had no idea. The only thing he really got prescribed were tranquilizers so that he would relax, the doctor saying it was probably just stress. This didn't make sense, since he was more relaxed than he had been in quite a while.

Anyway, he finally went to see a chiropractor (a very good one who was also an MD and an orthopedic specialist). She took x-rays, said he was very out of alignment, and she did an adjustment. Everything was pretty much cured within a few days from that. All the problems basically boiled down to very poor circulation due to him being so misaligned. She said come back if the problems start coming back. He went again, I think it was a year and a half later. I don't really trust the chiropractors that say come back every month or every six weeks. Since then, he's taken yoga, learned how to stretch very well on his own, and he doesn't need the adjustments. I think as long as you are flexible, your body can pretty much adjust on its own.

The only other thing that came to mind is perhaps Lyme Disease. The tingling just brought it to mind. It can have some pretty funky symptoms. Unfortunately, the tests they have aren't the best at detecting it.

You might want to consider going to an ND (naturopathic doctor) who can diagnose you using electrodermal screening, they run a small current through your body and look at what resonates to see what diseases you have and which parts of your body need attention. I've had it done. It was actually very accurate, but I was pregnant at the time, so I couldn't really get many treatments for anything (and, I feel much better now that I'm not pregnant and my immune system is fully back online, can't justify spending the $350/hr on the ND at this time).

 
Old 02-22-2005, 12:19 PM   #38
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Re: Help! What is wrong with me?

I went thru "intensive therapy" with a chiropractor several years ago, and don't regret it. Now I see one every few months. I've learned to be able to tell when I'm out of alignment, and how bad it is. She's got a good point - you were an active athlete, and that can really whack you out.

 
Old 02-22-2005, 12:22 PM   #39
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Re: Help! What is wrong with me?

Quote:
Originally Posted by Chantel2003
Hi again

I asked how long you slept because your thyroid function could be off and sleeping 12 hours or longer sounds like it could be your thyroid. I don't think this could be causing all of your other problems, but maybe it could be something to ask when you get all of your tests back.

I sure hope you find out soon hun Keep posting and letting us know.

Chantel
Sleeping long hours could mean depression and fatigue as well. Or poor sleep quality.

 
Old 02-22-2005, 02:34 PM   #40
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Re: Help! What is wrong with me?

Exist21,

I'm sorry that I haven't posted sooner and have missed some of your questions. This thread has gotten a bit "gangly" to deal with and I have definitely missed a lot of new posts despite requesting immediate email notifications.

It's my pleasure to try and help you with this and the greatest reward will be your recovery from whatever is ailing you.

You would be better served by having an internist then a GP. If you're a healthy individual a GP is fine but whenever you have issues or conditions I've found internists to be more knowledgeable and much more helpful.

If you have not been referred to a kidney specialist you should definitely see one.

Sadly dianostic tests are never completely conclusive. False positives and negatives are a given and there is of course human error to contend with.

It sounds to me like you are suffering from overhydration.

Overhydration is much more common among people whose kidneys do not excrete urine normally—for example, among people with a disorder of the heart, kidneys, or liver. Overhydration may also result from syndrome of inappropriate secretion of antidiuretic hormone (SIADH). In this syndrome, the pituitary gland secretes too much antidiuretic hormone, stimulating the kidneys to conserve water.

Doctors try to distinguish between overhydration and excess blood volume. With overhydration and normal blood volume, the excess water usually moves into the cells, and tissue swelling (edema) does not occur. With overhydration and excess blood volume, an excess amount of sodium prevents the excess water from moving into the cells; instead, the excess water accumulates around the cells, resulting in edema in the chest, abdomen, and lower legs.

Since you are not complaining of any sort of edema in your body chances are your blood volume is normal.

Treatment for this condition is restriction of water to as little as 1 quart per day but this should NEVER be done without the advice and assistance of a physician. Sometimes reduction of sodium is helpful. It's a delicate balancing act. Since you know that restriciting your water intake makes you feel better this should be a HUGE clue to your doctors. If you haven't let your doctors know this yet tell them immediately.

I'm very sorry that you had such an unpleasent experience with the second urologist. Some doctors are "pigs" as my girlfriend would say. Sadly proper bedside manner is still not stressed in med school.

If you're suppose to follow-up with the 3rd urologist then do so and tell him about feeling better when you restrict your fluid intake and how poorly you feel when you don't restrict it. If he doesn't bring it up suggest the possibility of overhydration to him. Also, ask if you can be referred to a kidney specialist.

Do a search online for overhydration so you will be familiar with the condition before you see your doctor again. In the meantime try cutting back on salting your food and high sodium foods and see if there is an improvement.

I'm sorry if I missed any of your questions. We might want to think about starting a fresh thread.

Keep us posted. I'm VERY curious to see what your physician will say. If the diagnosis of overhydration is correct it would explain quite a few of your other complaints.

Good luck.

Sincerely,
Antoinette

 
Old 02-23-2005, 01:53 AM   #41
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exist21 HB User
Re: Help! What is wrong with me?

Quote:
Originally Posted by Chantel2003
Hi again

I asked how long you slept because your thyroid function could be off and sleeping 12 hours or longer sounds like it could be your thyroid. I don't think this could be causing all of your other problems, but maybe it could be something to ask when you get all of your tests back.

I sure hope you find out soon hun Keep posting and letting us know.

Chantel
Hey Chantel. I do seem to sleep a lot, but I don't want to overstate how much I sleep, either. In general, the length of my sleep isn't too abnormal, I don't think. I seem to sleep ok. I'm more concerned about waking up not feeling refreshed. Someone mentioned that possibly I'm being interrupted in my sleep without knowing it. I don't think that's happening, but I don't know. The only thing that really interupts my sleep is when I have to get out of bed to urinate, which is annoying, but I usually fall right back to sleep anyway. My sleeping schedule is very out of wack, though, and has been for some time.

Thanks for your concern, Chantel. Those smiley faces are oddly soothing.

 
Old 02-23-2005, 02:08 AM   #42
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exist21 HB User
Re: Help! What is wrong with me?

Quote:
Originally Posted by OfficialJoe
I had a quick scan through the suggestions, and they all seem to give some good advice. One thing I did not pick up in any replies was the suggestion that you might suffer from diabetes. Many of your symptoms correspond well with the symptoms of Type 2 diabetes, including erectile dysfunction, frequent urination, fatigue etc.

As I haven't read all of the posts in detail, this might have come up. Your tests might have brought up some red lights in this regard as well so it might be ruled out, but in my experience tests are designed to find specific things and often ignores other signs.

So this might be a total misgrab, but it might be worth investigating.

G.
G., thanks for replying. I do seem to have a lot of the same symptoms as Type 2 diabetes. It's never been brought up, though, and I assumed it would have if there was any chance I had it. I'll investigate it. Thanks again.

 
Old 02-23-2005, 02:21 AM   #43
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Re: Help! What is wrong with me?

Susannah, thank you very much for the suggestions. I'll keep them all in mind.

Kerry1, thank you too. About the sleeping. I just responded again to Chantel above this post. I don't want to overstate how much I sleep. I don't think the length of my sleep is too abnormal, although my sleep schedule is certainly out of whack.

 
Old 02-23-2005, 03:42 AM   #44
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Re: Help! What is wrong with me?

Quote:
I'm sorry that I haven't posted sooner and have missed some of your questions. This thread has gotten a bit "gangly" to deal with and I have definitely missed a lot of new posts despite requesting immediate email notifications.

It's my pleasure to try and help you with this and the greatest reward will be your recovery from whatever is ailing you.
Antoinette, you've been wonderful. Thank you. And you've posted plenty soon. I'm just happy you're replying. Take all the time you want.

Quote:
You would be better served by having an internist then a GP. If you're a healthy individual a GP is fine but whenever you have issues or conditions I've found internists to be more knowledgeable and much more helpful.
Ok. I was thinking of changing doctors anyway.

Quote:
If you have not been referred to a kidney specialist you should definitely see one.
I think I will definitely see a kidney specialist, because I definitely think something is wrong with how I process fluids. My only worry is that, as I said, I think my kidneys were tested, which is sort of discouraging. Is there any sort of prerequisite for seeing a kidney specialist, like actual bloodwork showing that you have a problem? Do you think he/she will wonder what I'm doing there if they ask have my kidneys been tested and I say yeah, everything came back fine, but I decided to see you anyway?

Quote:
Sadly dianostic tests are never completely conclusive. False positives and negatives are a given and there is of course human error to contend with.
So hypothetically I could have something wrong with my kidneys despite having a test that said they were ok?

Quote:
It sounds to me like you are suffering from overhydration.

Overhydration is much more common among people whose kidneys do not excrete urine normally—for example, among people with a disorder of the heart, kidneys, or liver. Overhydration may also result from syndrome of inappropriate secretion of antidiuretic hormone (SIADH). In this syndrome, the pituitary gland secretes too much antidiuretic hormone, stimulating the kidneys to conserve water.

Doctors try to distinguish between overhydration and excess blood volume. With overhydration and normal blood volume, the excess water usually moves into the cells, and tissue swelling (edema) does not occur. With overhydration and excess blood volume, an excess amount of sodium prevents the excess water from moving into the cells; instead, the excess water accumulates around the cells, resulting in edema in the chest, abdomen, and lower legs.

Since you are not complaining of any sort of edema in your body chances are your blood volume is normal.

Treatment for this condition is restriction of water to as little as 1 quart per day but this should NEVER be done without the advice and assistance of a physician. Sometimes reduction of sodium is helpful. It's a delicate balancing act. Since you know that restriciting your water intake makes you feel better this should be a HUGE clue to your doctors. If you haven't let your doctors know this yet tell them immediately.
Ok, I'll check it out. And I'll see if I have any questions.

Quote:
I'm very sorry that you had such an unpleasent experience with the second urologist. Some doctors are "pigs" as my girlfriend would say. Sadly proper bedside manner is still not stressed in med school.
Maybe I can borrow your girlfriend for moral support when I have my next doctor visit -- what do you think? Calling someone a pig doesn't have the same ring to it when a man says it. But I hope that isn't necessary.

Quote:
If you're suppose to follow-up with the 3rd urologist then do so and tell him about feeling better when you restrict your fluid intake and how poorly you feel when you don't restrict it. If he doesn't bring it up suggest the possibility of overhydration to him. Also, ask if you can be referred to a kidney specialist.
Ok. So initially you think it's better to work this thing from the trouble-processing-fluids angle by seeing a kidney specialist, as opposed to working it from the ED and hands-changing-color angle by seeing a vascular surgeon? I guess I could do both, too. I know you may not have a specific answer, since you don't know what's wrong with me, but even just your best hunch would be appreciated.

Quote:
Do a search online for overhydration so you will be familiar with the condition before you see your doctor again. In the meantime try cutting back on salting your food and high sodium foods and see if there is an improvement
.

Ok.

Quote:
I'm sorry if I missed any of your questions. We might want to think about starting a fresh thread.

Keep us posted. I'm VERY curious to see what your physician will say. If the diagnosis of overhydration is correct it would explain quite a few of your other complaints.

Good luck.

Sincerely,
Antoinette
I'm not sure what the board etiquette is, but if it would be helpful for me to start another thread, I have no problem with that. Thanks again, Antoinette.

Oh yeah. One more thing. About the bloodshot eyes. I feel like maybe I put too much emphasis on that. I stressed that in the beginning because I knew my story might make people reasonably suspicious. And because the bloodshot eyes, along with the hand-changing-color thing, can actually be seen I made a point to mention that. And although my eyes do sometimes become extremely and abnormally bloodshot--and I'm not just looking for the slightest red vein in my eye so I can say "Aha, I knew I was sick!"-- they aren't always bloodshot when I'm feeling very sick. I drank too much the past couple days, for example, and today I felt really horrible but my eyes weren't bloodshot. In other words, my eyes do become extremely bloodshot and it does have something to do with how much I drink, but they don't always become extremely bloodshot when I've had too much to drink -- I don't know why though. But I do ALWAYS feel sick when I've had too much to drink. That part is consistent.

 
Old 02-23-2005, 04:03 AM   #45
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Re: Help! What is wrong with me?

Quote:
Originally Posted by exist21
Hey Chantel. I do seem to sleep a lot, but I don't want to overstate how much I sleep, either. In general, the length of my sleep isn't too abnormal, I don't think. I seem to sleep ok. I'm more concerned about waking up not feeling refreshed. Someone mentioned that possibly I'm being interrupted in my sleep without knowing it. I don't think that's happening, but I don't know. The only thing that really interupts my sleep is when I have to get out of bed to urinate, which is annoying, but I usually fall right back to sleep anyway. My sleeping schedule is very out of wack, though, and has been for some time.

Thanks for your concern, Chantel. Those smiley faces are oddly soothing.
Hey again hun

I'm glad that I could at least make you feel better with some cute little smiles. I know what you are going through here because I went through something similiar about a year ago. I had to run so many tests and it gets exhausting at times and you just want to give up. Well, don't give up. You know how your body works and only you can tell if something is wrong. Keep trying to find out what it is k? I wish you all the luck in the world. I'm going to keep following this thread and see if you find out anything. All of these people give wonderful suggestions.

Chantel

 
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