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Old 04-12-2007, 12:16 PM   #1
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Last Hopes Dashed

Hello all. I just wanted to share a story that, sadly, many of you will probably relate to. For years I have suffered from the symptoms of CFS. I have seen countless doctors, each of whom has dismissed me as "depressed." Through it all, I've remained as upbeat as possible. I'm generally a very positive person and even though I can barely muster the energy to type this post, I have still always felt that the answer was out there and I just had to keep pushing. Finally I found a doctor (a neurologist) who told me my blood tests showed epstein barr and she felt CFS was my problem but she did not know enough about it. After searching high and low for a specialist near me, I finally contacted a very high profile clinic, who told me, yes, they had a doctor who was a CFS expert and that he'd had a cancellation and could see me in two months. (wait list is normally almost a year). I was ecstatic!
Well, that appointment was today. My husband drove me the hour and a half to the clinic in awful rain, and I was armed with all my lab results, MRI, Xray results, etc, and a typed list of all my symptoms (fatigue, muscle weakness, cognitive issues, etc) and everything I have tried in terms of meds and supplements. The doctor, who is also affiliated with a prominent university, informed me that he's not an "expert," he's just the only one at the clinic who will even evaluate for CFS. He also told me his belief that CFS is not in any way related to EB and that it is, in fact, caused by depression. He told me that I need to find a doctor willing to put me on the appropriate anti-depressant and there is nothign else wrong with me. I was mortified. I informed him that not only do I feel 100% certain that I am not depressed, that I have seen a psychiatrist who also confirmed that I do not suffer from depression. In fact, the psychiatrist told me she did not see any need to prescribe me anything. She urged me to keep fighting to find the root of my problems. Well this doctor today told me that 70% of people who are depressed don't think they are. So not only was he telling me I'm just depressed, he's also telling me I'm in denial or not smart enough to know my own body and emotions.
I am devestated to say the least. No doctor I've seen knows of anyone even remotely close to me who specializes in or at least knows about CFS. This was my last resort, and the doctor didn't even look over my labs or symptoms before dismissing me as depressed. I don't know what to do anymore. My life as I knew it is gone. Do I just have to live with this?

 
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Old 04-13-2007, 08:50 AM   #2
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Re: Last Hopes Dashed

I'm sorry you have to go through all of this. It amazes me that a doctor could actually believe that 70% of people who are supposedly depressed don't know that they are. 70%??? Sounds to me like wrong diagnoses and doctors unwilling to take the time to actually evaluate a patient for something else, so they label them as "depressed." I'm sure there are some people out there who are depressed and don't really know that that's why they feel the way they do, but at least they can acknowledge their symptoms and it would probably make sense to them once it were explained by a Psychiatrist. I doubt that number is 70%, though, in my humble opinion. If that doc is supposedly willing to diagnose CFS, why wouldn't he take a look at your labs and at least consider the possibility with you?

I am only starting down this path of possible CFS myself, so I can't offer any real advice of what to do about it, only sympathy for doctor's giving you the blank stare, assuming your problem is all in your head and are quick to dismiss you.

Up until 5 months ago, I was perfectly healthy and very active. Then, I got a cold that hung on for 6-7 weeks, but when the cold symptoms finally went away, I still have not felt well since. My debilitating and very bizarre symptoms are post-exertional malaise, unrefreshed sleep, and orthostatic intolerance. (I have other symptoms of CFS as well, but they aren't debilitating.) I feel like I'm constantly dealing with a delayed reaction energy deficit. My body no longer tells me immediately when I'm expending too much energy, I feel it THE NEXT DAY and it is an over-exaggerated response to the minimal energy expended the previous day and lasts for day/weeks. So, I can't just "take it easy and not do too much" because my body no longer tells me when I'm doing too much, and "too much" these days is taking a bath or other little things that are normally no big deal. I feel like I'm continually paying for energy I expended days/weeks ago with none left over for today. In addition to that, I feel like there is a hole in the bottom of my energy tank, so even going to bed early and getting a good night's sleep doesn't reset my energy level anymore; I always have an energy "deficit." Then there's the orthostatic intolerance where I can't stand up long enough to peel an orange over the garbage can anymore (or take a shower, stand in line at the pharmacy, etc.) without feeling like I'm going to pass out and fade into oblivion. It doesn't happen when I first stand up, only when I've been standing in one place for 2-3 minutes. My symptoms are so bizarre that every doctor looks at me like I'm absolutely off my rocker and then secretly looks around for the Candid Camera because I must be joking! ARGH! I know what I feel and what's normal and not normal for my body.

In reviewing the diagnosis criteria for CFS, I exceed them with the only exception being that I have only been dealing with this for 5 months (so far), not the minimum of 6, but I'm still on a downward spiral. Up until last week, I didn't know anything about CFS nor did I know the technical names of my bizarre symptoms that are all listed and defined under CFS. I have been tested for everything under the sun and everything has come back normal. I have been to my OB, and Internist with a specialty in cardiology, 3 endocrinologists, a pulmonologist, and referred back to my OB. On paper, I look fantastic, but in reality I feel 70-85% dead every single day. Everyone in my world is trying to pass this off as "normal" pregnancy stuff because I happen to be 6 months pregnant with my 3rd baby, but my OB says no way, this is NOT normal and she's never heard of any pregnant women who've been through what I have in the past 5 months. I know my body, even my pregnant body, and I understand that every pregnancy is different, but this is NOT normal. I concede that my symptoms may be worse because my body is expending energy to grow another human being, but do not agree that this is all a pregnancy thing that will just disappear in 3 more months (that might as well be an eternity, I'm barely able to take care of myself, let alone my 2-year-old anymore!).

Every doc looks at my pregnant belly and immediately assumes I'm just looking for an excuse to be lazy. No, I HATE being lazy and I want my life back! I had 10 "excuses" to be lazy before I even walked into anyone else's office, I want to FEEL better! I don't know that I'll ever get a real diagnosis, but the Internist referred me back to my OB and said he can't help me anymore. After finding the technical names of my bizarre symptoms, I decided to schedule another appointment with him anyway and see if maybe there is something else (including CFS, since it explains EVERY SINGLE BIZARRE THING that has happened over the last 5 months to a T) that perhaps he didn't think about because I wasn't doing a good job of explaining my symptoms, and I was only complaining about the debilitating ones, not every little thing that isn't actually bothering me but fits with CFS. He's out of the office until Tuesday, so I have an appointment then. I feel like the stalker patient now, but I need to feel better! I'd much rather spend my time elsewhere besides doctors' offices, but I want my life back!

I hope you can find a doc who can help you. I'm probably in the same boat you are but only at the beginning of the road, so I don't know where to tell you to go to find a good doc who can help you. You are in my prayers and I hope you are able to get some relief soon! I haven't looked yet, but are there books about managing CFS that might help? When I have something "new" come up that I don't know much about, I search the Internet and head to the bookstore. I haven't done that yet because, although CFS seems to fit my situation and the post-exertional malaise symptom seems to be a defining symptom of CFS, there may still be things that haven't been ruled out yet in my case (I won't buy the depression diagnosis either - I'm not depressed, I WANT my life back!), so I'm going to give the Internist one more shot to come up with something else to explain my symptoms now that I know what they're called and can talk more intelligently.

 
Old 04-13-2007, 02:45 PM   #3
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Re: Last Hopes Dashed

Thanks for your kind words. I am sorry you are going through this as well, and I cannot imagine being pregnant and taking care of other children on top of it! I feel like I am so weak sometimes I don't even give my dog the attention he deserves, so I certainly tip my hat to you!
Your experiences sound similar to mine. I have been tested for everything and once the results come back negative they turn to the old stand-by, depression. I know myself, and I am not depressed. In fact, I'm pretty damn proud of how positive I've remained during almost 4 years of unrelenting fatigue, weakness, worseing cognitive issues, and countless other things that come and go. I've done a lot of research and tried to find as many ways to cope as I can. I wear socks made for diabetics to deal with the burning, pins and needles, etc. I have tried to determine ways to exercise without going too far and paying for it for the next few days. I take supplements, NADH, CoQ10, probiotics, B12, etc, although I have not seen an increase in energy from them. Who knows--I might feel so much worse if I stop taking them!
The doctor I saw told me low doses of antidepressants to help with sleep are not the answer for me. (I was on Elavil for a while and it did not work, plus I gained a lot of weight.) He told me if you are going to go on an antidepressant then you should do it whole hog. (Of course this is probably becuase he thinks I am depressed and does not believe in CFS, per se) Well I am not going to start on a high dose of antidepressants and mask the real problem just to appease some lazy doctor who does not know the answer and does not want to admit that. As soon as I have some strength back I swear I am going to start fighting for more research around here on CFS and related conditions. Hopefully some day people who have to deal with this very real syndrome will stop being treated as though we are all either looking for attention, lazy, weak or just not in touch with our bodies enough to know that we are severely depressed.
Best of luck to you! Thanks again for your thoughtful response!

 
Old 04-13-2007, 06:29 PM   #4
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Re: Last Hopes Dashed

I'll tell you what, if I do in fact have CFS, I'll write a book and go on a mission to help educate people about it and it's debilitating effect on people's lives, once I figure out how to function on a daily basis with it. It will be a while, though, but maybe it will help people in the future.

 
Old 04-20-2007, 09:39 PM   #5
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Re: Last Hopes Dashed

Hi ladies,

reading your posts has made me SO ANGRY about the doctors! Obviously the doc (so called cfs specialist) you saw has never had cfs! Depression and anxiety can be created by having cfs and vice versa, it is not necessarily the cause however! There is no scientific evidence WORLDWIDE that shows an actual cause for cfs and so he is WRONG for saying that is why you have cfs symptoms!

Honestly this has made me so mad, I too have spent so much money over the past 4 years on various treatment options and the only ones that have helped are the alternative treatments (ie meditation, yoga, pilates and jin jhin juitsu (a specialised massage type therapy which unblocks energy meridians), this might sound like a load of hippy talk, but after 4 years of trying EVERYTHING this is what has offered me some help. My pregnancy has made my symptoms horrible but before I fell pregnant my symptoms were getting alot better and I even held down a full time job for 18 months (WOOHOOO! lol).

I believe stress is a HUGE factor in our cfs symptoms and we need to learn ways to deal with that. Treating cfs is a long,yet (can be) rewarding process (I think) as it has taught me alot about myself. I have had to deal with things from my childhood which I believe have manifested themselves and come out now as a physical illness "cfs". I have learnt that not everything in this life is black and white and our spiritual and emotional wellbeing is as important to heal as our physical. To treat cfs is to treat our physical and emotional bodies at the same time!

jmcummins3: You said about writing a book and wanting to help people, well that is my mission! I am only 23 however have grown up incredibly quickly having this illness for 4 years and I believe my growth from this illness is meant to be used to help others....especially now going through a pregnancy with it aswell.

Last edited by hollysteffi; 04-20-2007 at 09:40 PM.

 
Old 04-22-2007, 05:40 PM   #6
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Re: Last Hopes Dashed

Well, what are your symptoms? Because depression and CFS DO have really similar symptoms.


You should get a second opinion. If they think, too, that you don't have CFS, then maybe you really don't. CFS is an exclusive diagnosis; only after you check out every other possibility can you truly consider that you have CFS.

I don't mean this to sound harsh in any way, but some people don't look far enough before they self-diagnose with CFS, and since there's NO ADEQUATE TREATMENT, it's better to look elsewhere instead of remaining convinced you have something that you might really not have, especially when other doctors have told you that you don't have it.

Too many people suffer through "CFS-like" symptoms for years before finding out that they didn't have CFS, and that it was something else that could be TREATED or cured. Go on an antidepressant, at the worst case scenario, it'll lighten up some of your symptoms--ADs ARE used with pain and fatigue, and insomnia. Best case scenario? You'll find you really do have depression.

It's really nothing different than you'd do for CFS. So give it a try.

 
Old 04-23-2007, 07:03 AM   #7
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Re: Last Hopes Dashed

What a total load of crap.

I had a few docs mention getting a mental evaluation and I want to knock their block off. I think most docs are just idiots and unless you endup in the hospital half dead they dont care.

I know im sick, you know your sick, now its time to take further action. I just now found out smething is showing abnormal - if I have to self medicate i'll do it,but I would say to see a naturopath perhaps to help? I have come to despise physicians at this point - they are to quick to throw out AD meds and blame it on our mental status. I hope none of their wives fall ill with a mystery illness because then they will see first hand how freakin miserable it is.

The poster above mentioned CFS treatments and ADs and she is right, one of the most common AD given for CFS and fibro is cymbalta. Not for the reason that they dont believe but that cymbalta has a pain blocking ability. Anyhow if you do think about an AD that would be the one to try to help aliviate the physical symptoms of your very REAL disease.

Hugs

Last edited by Saksthriftave; 04-23-2007 at 07:06 AM.

 
Old 04-23-2007, 01:54 PM   #8
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Re: Last Hopes Dashed

I appreciate everyone's opinions on this subject, but I do have to say I was a bit shocked--maybe shocked is too harsh a word--but I was surprised to get a response on this board saying maybe it is depression.
After hearing several doctors use depression as a last ditched effort, as if they were guessing, I sought the advice of a very respected psychiatrist. She has said I am not depressed and she would not recommend depression meds for me. Granted, she doesn't know anything about CFS or Fibro, but that's why she wouldn't prescribe them for that either. She doesn't know what would be best and knows I need a specialist. Anyway, I am glad I went to her so she could confirm that depression is not my problem. I am continuing to see her once every 2 months or so, only becuase she's concerned that depression is something that develops with CFS and wants to keep track of how I'm doing in my quest for answers. But, as I said, she's a very well respected psychiatrist, and she will not prescribe me antidepressants. Yet I have physician after physician telling me I need to get on them pronto. The mixed messages are confusing.
I went for a walk yesterday--figured I would see how I handled it. Today I am so stiff I can barely move. I have swollen glands and a sore throat, my upper arm muscles feel very weak and I am super tired. But other than that, I am thrilled that spring is finally springing...and I don't feel the least bit depressed. I have bouts of frustration, but I don't dwell. I just wish I could find the right doctor!

 
Old 04-24-2007, 08:40 AM   #9
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Re: Last Hopes Dashed

Have you all been checked out by a sleep specialist? Sleep apnea even mild can cause all the symptoms diagnosed as CFS.

If you have sleep apnea and are being treated for CFS you will not get better. Also a sleep specialicist is very familiar with chronic fatigue which is a side effect of sleep deprivation.

Sleep disorders can be hidden and lurking and then something as simple as pregnancy, allergies, gaining five pounds.. tips the scale. I am not saying that CFS does not exhisit.. I thought I was living with it for 31 years.. I was actually born with and living with severe sleep apnea, like my parents and brother. Sleep disorders are teh most under diagnosed disorders out there.. because unless you specialize in sleep disorders, as another MD specialty your experience may be limited to a 15 minute seminar.

There are 80 sleep disorders out there and they can be and are oft times treated without drugs. Drugs in the case of sleep apnea and certain other sleep disorders will actually make matters worse and cause other extreme side effects like sleep walking and active sleep states.

In particular sleep apnea can be leathal, forcing yourself to stay asleep when your body has to wake up to restart your breathing cycle is one of the worst things you can do. Sleep apnea and many other disrupting sleep disorders are linked to acid reflux diseases, allergies, chronic fatigue, depression, anxiety, ADD and ADHD behavior in children and select adults, chronic respiratory diseases, high blood pressure, heart complications, high choleseteral, insomnia, and much more..

If you haven't seen a sleep MD and are getting no where with you other MD's, go see one it can not hurt you and may save you.

Sleep apnea is genetically dominant and can be passed on 80% chance of transition and amplification from parent to child. Sleep apnea is also the most under diagnosed disease in children under the age of 8 and tightly linked to SIDS. My son 4, has severe sleep apnea just like me.. and my parents and brother.. and grandfathers.

Now we are a happy CPAP family sleeping 6-10 hours (depends on family member) a night on our CPAP's.. no medicines necessary.. waking rested and getting healthier day by day. If I have another child I will have them tested at the age of 6 months.

NOTE: CHILDREN UNDER THE AGE OF EIGHT SHOULD NOT SNORE, it is not cute and not natural it is a sign of obstructive sleep apnea.
1) IF THEY SNORE, GASP FOR BREATHE, WAKE UP MORE THAN ONCE A NIGHT.
2) SLEEP WALK AND OR TALK
3) GRIND THEIR TEETH
4) FIGHT SLEEP AND NAPS (CHRONIC INSOMNIA)..
YOU ARE MOST LIKELY LOOKING AT OBSTRUCTIVE SLEEP APNEA.


IT EFFECTS GROWTH, ABILITY TO LEARN AND PAY ATTENTION, MENTAL AND PHYSICAL HEALTH, AND BEHAVIORAL CONTROL.

PLEASE DO NOT IGNORE THESE SIGNS... A simple outpatient ENT tonsilectomy and adnoidectomy can solve this in most cases.

This is just a thought for you to consider. Best of luck on finding your solutions.
MG
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Last edited by mkgbrook; 04-24-2007 at 08:54 AM.

 
Old 04-24-2007, 08:21 PM   #10
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Re: Last Hopes Dashed

Thanks--I think this is very important information. Just becuase the symptoms are similar doesn't mean it's always CFS. I'm not saying I definitely think I have it. It was suggested to me by a neurologist who said he didn't know any specialists but thought that's what was wrong with me. That's what I'm up against. I either get docs who say they think it's CFS but they don't know enough about it and can't help me or I get docs who say CFS doesn't exist or that it's caused by depression.
I haven't undergone a sleep study, but my husband says I do not snore or exhibit any strange sleeping issues. I asked my primary about sleep apnea long ago and she said no way. I asked the last doc about a sleep study and he said he saw no reason to recommend it. It's rather frustrating. I am keeping an open mind that this could be caused by other things though, and I think it's really importnat that you brought up sleep disorders. It's easy to get caught up thinking it's one particular thing and then other problems can get overlooked. Of course, today I am in so much pain, I am thinking the previous doctor who said fibromyalgia might be correct! I have an appt with a rheumatologist in about a month to explore that avenue as well.

 
Old 04-26-2007, 08:51 AM   #11
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Re: Last Hopes Dashed

Snoring is not necessary for sleep apnea.. it is a common trait.. but shallow breathing and low blood oxygenation in sleep has been known to cause sleep apnea as well.. it is also known as hyponea. My husband hsa hyponea based sleep apnea.. I have obstructive sleep apnea.. my son, bless his heart and the genetic lottery has both hyponea and sleep apnea.

Only way to know for sure is to get tested by a sleep specialist. If some one recommend CFS to me I would want a sleep specialist to treat me. That is my opinion of course.

Sincerely,
MG
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Old 05-16-2007, 06:09 PM   #12
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Re: Last Hopes Dashed

Hi Desperate and anyone else reading.

Please if you have not already have proper testing for thyroid and adrenal fatigue. I too was told I had CFS for three years along with the depression thing and had lexapro and xanax thrown at me which I refused to take as I knew something was wrong within in my body.

I had some hypo symptoms going on and docs kept telling me I was fine because I tested in the "normal" but the very bottom of the range. Who knows what was normal for me as I had never had my thyroid tested before. I continued on gettting sicker and sicker until finally physically crashing in 2004 and have spent the past three years trying to repair the damage done by stupid docs that would not listen or take the time to actually figure out what was wrong.

Turns out I was hypo and because went so long without meds it caused extreme adrenal fatigue, severe systemic candida and a horrific case of EBV. I've treated the candida for two years and demanded to be put on armour for my thyroid and cortef for my adrenals and am finally getting my life and energy back.

The correct tests you want for thyroid are: TSH, Free T3, Free T4 and Anti-TPO and TgAb to rule out Hashimotos. For the adrenals you want a 24 hour saliva test. If any of these test in the low range then you need treatment, nobody will feel well at the bottom of the range.

If you know something is wrong within your body then keep going until you get someone to listen. I eventually in the end had to resort to self-treating as docs would not let me have enough meds to get well just merely get out of bed.

Deb

 
Old 05-17-2007, 09:39 AM   #13
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Re: Last Hopes Dashed

thats why i dont like doctors, and i wont go back, please dont take my stubborn attitude, but like you my neurologiest, and doctor made me go see counseling to help with my depression, i too was told by my counseling after having to see her for 7 months that there is nothing wrong with me in the head. stilll i couldnt get results from doctors without getting purely insulted. when you dont get believed in, when the doctors treat you like your not real. and you really are going thru sooo much. and its such a pain to get to the doctors because you feel like your body is 89. take the anti depresents maybe, maybe it will help you with other stuff, (only if you want, but getting on them until your body is used to it , will make you tired).
((((()))))

 
Old 05-17-2007, 10:03 AM   #14
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Re: Last Hopes Dashed

Hi Deb and Viola,
Thanks for your responses. You both make a lot of sense. Unfortunately, even if I wanted to give anti-depressants a shot, my psychiatrist has refused to prescribe them for several reasons, number one being she doesn't think I need them and they might cause more harm than good if I'm not truly depressed. (I asked her about Wellbutrin for energy because I've seen quite a few posts on that, but she said she prescribes it a lot and has never heard of it improving energy.) But it seems so odd to me that a psychiatrist would refuse me any meds and all the physicians would tell me to get on them.

As far as thyroid, Deb, your advice is great. Thyroid disorders run in my family and I had read a lot about Hashimoto's. I read that it can cause some cognitive symptoms like poor word recall, etc, and it sounded so much like me, so about 3 years ago they gave me a full work up with an endocrinologist and said nothing was wrong. Now based on those 3 year old test results and a current TSH (done in Dec) they insist it's not thyroid. And no doctor will test for adrenal fatigue becuase they say it's expensive and they have to take several samples throughout the day, which doesn't work with the current "fast food" health care system where they want you in and out of their office in 15 minutes no matter what.

 
Old 05-19-2007, 03:44 PM   #15
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Re: Last Hopes Dashed

Anti-depressants do more than treat depression. They can work on pain, I know, even if you aren't depressed. I'm not sure about fatigue. If your psychiatrist refuses to prescribe anti-depressants then I would look for a new one. Wellbutrin is known to be energy-producing... that's why people take it in the morning! Same for several other anti-depressants. There's a reason they tell you to take some of them in the morning! (Others are sedating and you take them at night.)

-Mike

 
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