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    Old 11-29-2012, 11:20 AM   #1
    Argyles
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    No Relief for Chronic Kidney Stones

    Hi, I'm Argy and I have had well over 30 kidney stones in my life, countless ER visits, 5 surgeries to remove big stones. I've changed my diet, changed medication, it just has been told it was hereditary. I have gone a year with no stone; however, I have also had 4 in one month. No reason that anyone can tell.

    I had my first stone 11 years ago when I was 19. I thought I would die. I can easily remember getting strong medication in the ER and prescription for 20 morphine. I could go to my General doctor or my Urologist and get the strongest prescribed meds when I had a stone.

    Now, I cannot get pain medication where I live to save my life. I go to the ER and get Tramadol, my regular doctor won't even prescribe to me, and I can get the smallest hydrocodone from the urologist. If I'm in extreme pain the doctor says, go to the ER to manage your pain. This all happens with CT scans showing stones and blood in urine. I literally am suffering through these stones and no Physician in my town will help me. About 5 years ago, a doctor was charged and sentenced to prison for over prescribing pain medication. I don't know if that is why they won't prescribe me anything to touch the pain or if I'm being labeled as a pillhead.

    I don't understand what I'm doing wrong here. I'm a college graduate with a full-time job, I don't drink, don't smoke, I'm just kind of plain. I run 10ks, own a house, and my husband and I behave and look average people. Well, I have a Super Mario tattoo on my wrist (maybe that throws people off). I don't ask often, only when my supply of pain medication runs out. After 30 stones, I mean it's just take the medication, drink tons of water, rest when needed, and go for a walk, then I usually pass them. I bring them into the doctors almost every time I pass them for analysis (so that should be proof in int's own)

    I could go outside my city, I did that once. The ER doctor would do nothing for me because he stated it was suspicious that I lived over 30 miles away but came here instead.

    So now I just suffer with this intolerable pain. Recently, I illegally purchased some pain medication from a friend to have on hand when a stone strikes. I've even read guides on how to get pain medication, you know what to say, how to dress, ect. My problem is it should have to come to this. Given that I pay my high co-pays (even paid full price when I didn't have insurance), that should also say something for my struggle. I'm here to get better and be monitored by a doctor.

    I don't know what else to really do, maybe just vent to people who might understand. It just seems soo unfair, I know of people who take upwards for 10 huge Vicodin a day and all I want to do is kill some kidney stone pain when they strike.

     
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    Old 11-29-2012, 01:55 PM   #2
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    Re: No Relief for Chronic Kidney Stones

    First of all this is very abnormal to be having this many kidney stones. I would see a nephrologist and take your stone analysis with you. Calcium stones are often linked to hyperparathyroidism, an endocrine disorder. That hormone should be checked in blood. Uric acid stones can be prevented. It is a shame no one has sought to prevent these and figure out why you are forming so many. A kidney specialist should be more interested in the cause/prevention and not just treating the pain of passage.

     
    Old 11-30-2012, 05:24 AM   #3
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    Re: No Relief for Chronic Kidney Stones

    Ive went through a perriod where I passed about 30 stones and had to have surgery with double J stents to remove them 6 times in a 3 year period. All my stones were calcium and I ended up at a nephlologist who prescribed If I remember, slow magnesemm. Their is a cause wether they are uric acid or potassium and their is a treatment for both. Having schedule 2 narcotics around just in case was never part of my treatment plan. If I went to the ER and was peeing blood and gravel they treated me. If you have gone a year what do you need the narcs around for, and why are you buying them illegally or researching how to obtain them. You fit the profile of the new prescription pain med addict, educated, home owner, professional, you run, etc. etc etc etc

    Your friends getting 10 of the Big Vicodins a day means mot likely they shouldn't have access to the meds either, It's the relaxed sense that every american should have some Class 2 narcotics laying around just in case is why someone dies every 90 seconds from prescription drugs in america.

    If you haven't passed a stone in a year, your are no longer having chronic stones. Treat each on like a new event, You will either pass them or need medical help. I would certainly see a kidney doc and find out why your passing so many calcium stones and what can be taken to prevent them from occuring. Having passed a stone or a dozen stones in the past doesn't mean a doc is going to say sure lets make sure your supply of pain meds never drops below 20 or 30 pills just in case you pass another. That's not how acute pain issues are managed.

    Good luck, Dave

     
    Old 11-30-2012, 06:11 AM   #4
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    Re: No Relief for Chronic Kidney Stones

    I also have chronic kidney stones. I have been to several urologists and had several of my stones analyzed and none of them could tell me why I keep getting them. They are not due to calcium or normal stone componants. All I ever got was the make-up is normal for my enviroment? That helps me none.

    On to your problem. I guess I dont understand the need to have narcotics for "just incase". I get that the drs are not treating your pain but you should never by them illegally just to have some there. I know the pain of kidney stones is sometimes unbearable but I personally would never buy them from a friend.
    When you go to the ER what are you telling them? Clearly if you have blood and stone fragments in your urine, they know you have a stone. What treatment do the offer to you? Are they doing anything to check for a stone? Are you letting them try anything to get pain relief? You dont ask for a narcotic right? Are you letting them know that what they are doing doesnt resolve any pain? Thats weird that they refuse to treat your pain. I have never had a dr not treat me when I have an obv kidney stone.

    At this point I would def find a more understanding urologist who is willing to work with you to resolve your pain. I would do this while you have no stones and are not in any pain. If you get another one, they can contact your urologist and he can help with the treatment of your pain and it will not just be up to the ER doctors. Urologists are trained to handle kidney stone pain and know how bad the pain can be. If you have tried one and he wont help, try another. Do it now so when you get another stone, you will have it handled.
    Good luck to you!!
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    Old 11-30-2012, 07:13 AM   #5
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    Re: No Relief for Chronic Kidney Stones

    The reason I want to have them on hand is so I can treat myself and save the expense of going to the ER. We have a rather high ER co-pay so after a stone has passed, I ration the medication so when another hits I can hopefully just pass this one without the need of involving a doctor. I know that might sound like drug seeking behavior, but no doctor knows that I do that. I never ask for extra.

    When I go to the ER, I state that I have Flank Pain, I have a history of Kidney Stones. I've never asked for pain medication, I just let the physician give me what he decides to. The last prescription I received was actually not asked for, I called to make an appointment, the receptionist asked what kind of problem I had and I said "Kidney Stone". She said they didn't have an appointment so she offered to ask and get me something for the pain.

    I think that I'm taking this personally and it's the area I live in is the problem. My situation is weird and with on doctor in prison for 10 years and rual area where there is lots of meth and drug abuse, I'm just getting lumped into that category. I called my primary back yesterday and told him I was in extreme pain, he did call me in some Vicodin which game me some relief and he suggested that I come back in, it could be a gall stone. That made me feel tons better.

    But, we're the same. No reason why we have stones.

     
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    Old 11-30-2012, 07:21 AM   #6
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    Re: No Relief for Chronic Kidney Stones

    The reason I want to have them on hand is so I can treat myself and save the expense of going to the ER. We have a rather high ER co-pay so after a stone has passed, I ration the medication so when another hits I can hopefully just pass this one without the need of involving a doctor. I know that might sound like drug seeking behavior, but no doctor knows that I do that. I never ask for extra.

    When I go to the ER, I state that I have Flank Pain, I have a history of Kidney Stones. I've never asked for pain medication, I just let the physician give me what he decides to. The last prescription I received was actually not asked for, I called to make an appointment, the receptionist asked what kind of problem I had and I said "Kidney Stone". She said they didn't have an appointment so she offered to ask and get me something for the pain.

    I think that I'm taking this personally and it's the area I live in is the problem. My situation is weird and with on doctor in prison for 10 years and rual area where there is lots of meth and drug abuse, I'm just getting lumped into that category. I called my primary back yesterday and told him I was in extreme pain, he did call me in some Vicodin which game me some relief and he suggested that I come back in, it could be a gall stone. That made me feel tons better.

    But, we're the same. No reason why we have stones.

     
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    Old 11-30-2012, 10:46 AM   #7
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    Re: No Relief for Chronic Kidney Stones

    I think what you don't realize is that the reason it is so hard to get pain meds at times is because people are doing things illegally all the time. Just like yourself...you seem to not even be batting an eye about committing a Felony. That is what buying or even taking a controlled subtstance that isn't prescribed to you is.

    If any one of your Drs. does a drug test on you, they can check for the exact level of medication in your system and tell if you have more than prescribed or that you have med in your system when you should be "out" of them.

    As mentioned....opiates are not just a medication that are prescribed like Tylenol....they are for emergency situations or for long term chronic pain...as in pain that is 24/7, 7 days a week...365 a year that some of us here have.

    And the main reason why many of the Drs. are probably not treating you is because they can track everywhere you go and are getting opiates filled. No matter what town you are in...there is the Prescription Monitoring Program in 42 states that tracks you by name anywhere in the state and soon countrywide. Every trip to the ER, or Prescription you have filled by a Dr. from the Tramadol to the Vicodin shows up when they type in your name.

    While I appreciate your honesty by telling us these things....I'm just finding it hard to believe that you would risk going to jail and putting your "friend" in jail as well and ruining your life just to have some Vicodin around for when you want it when you can go to the ER for any emergency when you have a stone. Even if I was on my death bed I would never think to do something illegal and buy or get narcotics from someone off the "street"....

    Hopefully this new prescription will last you the next year or more since you should only need them in an emergency situation and if it gets so bad that you need to take them for more than a day or so...then you need to see your Dr. and go to the ER...

    I would hope that you would seek out a good Dr. to find out the cause of these stones as there are many other non medicinal ways to treat them and to keep them from occurring. And if it is your gall bladder....diet and exercise is also very helpful or a simple surgery to remove it if needed...

    So...I truly hope that you will reconsider ever doing something illegal again as it only will hurt yourself in the long run with trying to get appropriate pain management...

    I do wish you luck..

     
    Old 11-30-2012, 02:19 PM   #8
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    Re: No Relief for Chronic Kidney Stones

    Dear argyles,The times have changed from when a PCP could prescribe narcotics for his patients, as easily as before. There is now a new area of medicine,that many drs of all kinds can use to refer their patients to that require narcotic pain relievers for longer than a few weeks. Pain management. Primary & other drs that are not in the role of pain mgmt may not even buy the prescription pads needed to give a narcotic medicine stronger than tramadol & hydrocodone. Most patients that go to pain mgmt have chronic pain. The people in chronic pain use everything the pain mgmt dr prescribes, procedures to do epidural steroids, ablation, heat, ice, TENS etc and all the PM dr makes available to you to treat the chronic pain, before narcotics. The days of when your primary dr or your ob/gyn prescribed narcotics/opioids to have on hand just in case, imho, are gone This is the new way. There is ONLY acute pain & chronic pain. Two categories only. When you get a kidney stone and go to ER. That is acute pain. I would go to the ER everytime i had a kidney stone. One stone that I had was clear, sharp & it cut my ureter & urine was flowing into my body for 12 weeks. 1 1/2 inches of my ureter was gone. So, please dont take a chance that your GU organs will be fine, based solely on your level of pain. I live in an area that has really sub standard drs & hospital care. The tx med ctr is 25 mins away. EVERYONE that works @ that med ctr knows about the care in my area & says good thing you came here. I would make an appt to see a nephrologist or urologist in the largest, best medical center that I could reasonably get to, and go there wanting testing & treatment. I had a stent that stays in so stones can just slide out. I would not mention medication for pain and i would not ask friends for their medications anymore. The ER will recommend a new urologist- nephrologist. I wouldnt see the other drs for this problem, anymore. Then if you get a stone, go to the ER in the new, big med ctr & always use the same hospital. The ER will call him/her dr & inform them that you are there, & then you follow up with your med ctr urologist or nephrologist.This iwill be a chance for you to start over hopefully. Imo, this is how to be treated for chronic kidney stones. You do just what they say 100%, or you get a 2nd opinion. All medical care is managed by the dr. Imo, it should not be solely by you at
    me.This is my understanding of how you approach medical care in 2012,
    not by that book you have. I truly dont want you to suffer because you
    were uninformed. You literally have to get with the program b/c everything
    is programmed (treatment plans, er protocol, managed care)so to speak. I
    hope this helps you better understand. Thank you, gmak

    Last edited by gmak; 12-04-2012 at 06:26 PM. Reason: wording

     
    Old 12-01-2012, 05:45 AM   #9
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    Re: No Relief for Chronic Kidney Stones

    I apperciate all your advice, I didn't see it that way. I went to the ER last night when this stone became unbearable and it was a good experience. They took me in right away, the doctor managed my pain and (most importantly) my nausea and sent me home with strong enough meds that I could take care of myself for a few days. He even told me to return if these meds don't cover my pain and he would give me another shot and would give me something different.

    I just worry that this will be one of the times I encounter a doctor who will not help with the stone then I"m left with "what do I do". Stones just make me anxious, the pain is bad, and having to have them surgically removed was a terrible experience.

    When it comes to finding out why, nothing has given me a definitive answer. I lost 40lbs, started eating healthy, and running. I cut out all dark drinks, started journalism all my foods, took lods of tests, analyzed my stones, and nothing has stopped them.

     
    Old 12-01-2012, 06:59 AM   #10
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    Re: No Relief for Chronic Kidney Stones

    Hey Argyles, I hope you didn't feel atacked, That was not my intention, I just tend to get right to the point and docs simply dont give meds to have on hand just in case. Part of the reason is the whole drug thuing, the other part is your ER doc are taking a risk with your help if they give you very potent meds that may or may not allow you to avoid going to the ER when the next time you need to go may be for surgeoery to remove a blocked stone which in turns blocks the kidneyHavinf aditional pain meds means you dont hae to tlisten to your bodys warning signs.

    I totally get it would be convienant, but regardless of how big the last script was it doesn't really seem he has given you extra, to set aside for the next round.

    Although the stomnes may seem chronic in nature, your pain isn't. Treatent of acute pain is very different from treatment of chronic pain. My round of stones was after the last failed fusion where my body was reabsorbing all the donar bone. Fortunately it ended, It was an OTC the nephologist suggested. and I cant say that it fixed it or that the stones just ran their ourse.

    There is a young lady hat actually had a kidney removed because she was passing so many it becme disabling when you never get a break from the cycle.

     
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    Old 12-01-2012, 07:33 AM   #11
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    Re: No Relief for Chronic Kidney Stones

    Dear argyles, I think i can see what you mean about how crummy the care is where you live. To my knowledge most people in the ER with kidney stones get admitted to the hospital. I experienced the ER drs locate the stone & call in a urologist that takes out the stone or does lithotripsy. No matter what tests have previously been done, or even having prescriptions for the pain, the answer for chronic kidney stones is not pain medication. It doesnt fix anything concerning the health of your kidneys. I would review the above posts again & try to understand. We dont want you left suffering. Please find a nephrologist or an urologist who will do something to treat this condition. In my opinion, the bad care has convinced you that this is just how it is so why try anymore & and this has contributed to the wrong thinking that you should stay home. Please go to a dr & hospital system that will give you a diagnosis, treatment, and emergency & follow up care.
    This survival mode you are living in, imo, is b/c of the lack of proper care & it is affecting the way that you approach healthcare. It doesnt have to be this way. Please do what is right for you
    and pursue a dr who will consistently & continually take good care of you.
    Thanks, gmak

    Last edited by gmak; 12-04-2012 at 07:57 PM. Reason: wording

     
    Old 12-01-2012, 01:00 PM   #12
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    Re: No Relief for Chronic Kidney Stones

    I did not go to the ER to get a prescription, I was soo sick last night that I was throwing up and husband begged me to go . I could not keep any of my mild medication down. He knew that, at the very least, they would give me something for nausea. The suggestions here helped me make that decision. I think you're right that the poor care has forced me to believe that I don't deserve care or that I'm incorrectly assuming that I'm being labeled as a drug addict. That feeling alone makes me anxious and probably dosen't help my situation.

    I forgot to mention that my insurance will not cover a urologist right now because they are considering my history of kidney stones as pre-existing. That is another reason for me to try and save medication.

    For me, it's just comforting to know that I have relief for Kidney stones at home if one should hit. The two pain medications I do have, one is very mild while the other is very strong (which I only can take if the pain is extremely bad because I do not like how it makes me feel.

    I've seen multiple doctors, had multiple tests, lost 40lbs, changed my diet, changed medication, CT, xrays, MRI, ultrasounds, and even a spinal tap. They cannot figure it out, my dad, uncle, and cousins all get stones regularally too. They all live elsewhere and don't have the same problem I do when it comes to pain management. I have an appointment with a holistic doctor next weekl

    Believe me, I don't want to have stones. One kidney stone usually will keep me from running for 4 days. The increased stones have cost me 2 races this fall.

    Last edited by Argyles; 12-01-2012 at 01:39 PM. Reason: Additional info

     
    Old 12-01-2012, 02:54 PM   #13
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    Re: No Relief for Chronic Kidney Stones

    Yes argyles, we all were urging you to go to ER. And, Ive had kidney stones so i know how horrible they are. I looked like the girl from the exorcist. We all are saying, when you have acute pain as severe as a kidney stone it is so severe because it is a serious illness. Because you are used to them AND/OR because you have not gotten proper care due to it being bad in your area that you have resorted to, like last resort, caring for yourself at home. And that this is not what is the best for you when you are really, really sick. The cause must continually be looked for by clinicians expert in this area of kidney stone problems without end. See, we all know that you have done all you can do, like we do with chronic pain. But, its not acute pain we suffer from with back, neck, knee etc issues its chronic pain. But, yours IS acute pain, when your body is telling you that something is wrong & something IS badly wrong when you have a kidney stone, I think gauging the severity of the stone only by how much pain you are having isnt accurate. Isnt safe. You should be admitted, imo, unless the stone is in your bladder. Ignoring the cause, b/c they tried & failed before isnt a reason for you to have to stay home & deal with it yourself the best that you can. For you to have insurance & be treated like this is a travesty, imho.I've seen that a patient @ a county facility gets wonderful care. They would be in the GU clinic being seen regularly. This is what everyone wants for you. No one doubts you hurt or are sick, we just want you to find good medical care from a specialist that will continue to find cause, ER care that you can count on & follow up care where the dr can treat you to prevent stone formation. We are glad you are here, we are not drs just people who want to support you & care.While under the care of a dr, each stone should be treated as a separate event with testing each time. I would make sure about that pre existing thing. Ive seen on board where its
    illegal or ins co's cant do that anymore?Something new? Thank you, gmak

    Last edited by gmak; 12-04-2012 at 07:58 PM. Reason: wording

     
    Old 12-01-2012, 04:55 PM   #14
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    Re: No Relief for Chronic Kidney Stones

    As far as I know, the new health care reform only states that you can't be denied insurance for a pre existing condition, and that doesn't start until 2014 (since 2010 this has been in effect for kids). Through an employer, the only way they can deny coverage for a pre existing condition is if you didn't have continuous coverage for at least 12 months prior, without a break of more than 63 days (then there is typically a waiting period of 12 months).

    Surprised they will pay an ER bill for a pre existing condition if they won't cover a doctor visit? Or are you expecting to pay out of pocket? I don't know enough to comment on anything on the kidney stones though. Sorry you are dealing with them...I can relate to just wanting to treat them at home, but can see the risk in assuming its the same as last time and have it not be. Best wishes.
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    Old 12-01-2012, 07:04 PM   #15
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    Re: No Relief for Chronic Kidney Stones

    wow I just read all the threads, what a mess you poor thing. THe only input I have is that my PCP told me to take Vit C 2000 mg a day to help prevent them. (I take topomax and it can cause them so far so good). Good luck and I hope you get relief soon. Cathy x

     
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