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  • It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

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    Old 06-03-2005, 05:26 AM   #76
    goody2shuz
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    I am so sorry to hear that you girls are having such a bad time of things this week. Please know that I continue to hold you in my thoughts & prayers.

    Lisa ~ Seems that only a week ago things were going so great for you. Perhaps it's only a matter of them adjusting the meds a little bit...it must be so frustrating feeling almost back to normal and then WHAM almost landing on your face while walking. Ireally feel for you and hope that things get better again for you. How are you feeling since the cortisol injection??? I wouldn't worry about going on the antidepressants. sometimes when you have to deal with a chronic condition and it's affect on your life you really need the antidepressants to help you through. I was on Wellbutrin years ago for a chronic back problem and it helped....you won't be on it forever but it'll help you deal mentally and emotionally with the limitations and changes that your physical limitations are putting on you. And it's a good idea to wait a little bit until you adjust to the other meds.

    Jen ~ Sorry to hear about your setback as well. I know this all must be so scarey for you and I hope that soon things will get better. I think your GYN is right about holding off on a second baby for now....with the meds you are on and the physical stresses your body is already enduring it wouldn't be in your best interest to put the added physical changes your body would incur with a pregnancy. The time will come for baby #2 and you will know when that time is best for both you and your baby. For now you just focus on the mommy being healthy.

    Thanks for asking about my brother. He continues to do well although he states that he does not feel normal. The meds allow him to function and unfortunately stress seems to worsten things with this type of condition which you girls probably have noticed. And in life it is almost impossible to remove all stress as much as we try to. He still experiences the chest pressure, headaches, and tremors but the meds seem to keep it under control and tolerable. He just told me about how thye check his pacemaker every few weeks over the phone. He places something on his wrist & connects it to the phone and a computer reads the information to determine whether the settings are within range. It's amazing how things are done

    Well.....I am hoping to hear some good news from you two next time you post. Meanwhile know that you both are in my prayers....Goody

     
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    Old 06-16-2005, 09:07 AM   #77
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Well girls i'm almost at my wits end..the headaches are back full force..nothing seems to help i usually let it runs its coarse, which usually a day and overnight..starts with a bad dizzy spell. I have had blurred vision and loss of vision now at times. Cognitive skills have been having issues, can't say what i'm thinking or words come out slurred or not pronounced right. When i walk feel like i'm drunk most of the time with out the luxury of alcohol to get me there..lol Still waking up 2-3 times a night to go to the bathroom. Last week started with severe cramping in my legs nothing seems to help gets worse at night, endo not sure if that is a side affect from the florinef or not. Dizzy spells are still out of control woke me up 3 times out of sleep with them, get them sitting ,laying or standing and walking. Went to a neurologist was useless he gave me no answers and kicked me back to my family doc. Going to see another neuro and see what he says. Just confused about the cognitive and vision issues...not sure if it is POTS related or something else. My endo thought possibly the starts of MS which my MRI showed 2 small white spots the radiologist thought were secondary to demylating disease such as MS, gliosis or blood vessel ischemia. But no one wants to address that possiblity and says they are nothing and passes the buck to someone else, with no answers. Gotten to the point hard to do daily living , i can't shower standing the whole time have to sit 2-3 times, then dry off and sit , then get dressed and sit some more then brush my hair maybe if i'm not to exausted. I have been sleeping 80% of the day. I'm so angry and frustrated right now its unbelievable. My endo thinks i should maybe go up to Columbia University they are doing research on POTS and see what they say. My son doesn't understand i don't feel well at the age of 3 he wants his mommy to be chasing him around and having fun like we use to and i can't, it tears my heart up cuz i just want to be normal again and get some answers.MY dear , loving husband what can i say he truely is a gift from god...i think he is about to beat up some drs though..heehe if we don't get more answers soon. Cuz this isn't living, haven't driven in 2 months and will be almost 2 months since i have been at work, i'm sure they will not hold me job much longer and not sure if i can ever do it again anyway.

    Lisa- i hope all is well with you and the medicine is working for you, i'm praying that it helps and you are doing well with all this unlike me. You are in my prayers

    Goody-i hope your brother is still progressing well and not having any serious problems. Hopefully he is returning to a normal life for himself.

    Jen

     
    Old 06-17-2005, 05:39 AM   #78
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Oh, Jen....I am so sorry to hear how things are going lately for you. I can only imagine how this is taking it's toll on you. Thank God you have a husband who supports you so well. I feel for you being a mother myself with a disability since before my children were even born and yet it doesn't even impact my life as this condition seems to have on yours. I know that this all must weigh heavily on you in terms of your limitations....please most of all do not allow it to depress you....if you feel this way speak to your doctors..there was a time that I had to go on Wellbutrin, it is a mild antidepressant that alot of women are on for menopausal symptoms and it may help until you get to the bottom of all of this. I think it is a great idea to go to Columbia and get a total workup until the find the treatment that will give you back your life. Keep on seeking out medical expertise until you find out a way to help restore your ability to function on a daily basis.

    As for my brother, I spoke to him yesterday and was amazed at how well he sounds. The meds seem to be helping him, he is back to fishing & boating which he loves and he is coming for a visit to celebrate Father's Day and have a mini reunion with most of my family minus my other brother. He arrives late tonite and I am looking so much forward to seeing him since I haven't since he had been hospitalized. I haven't seen him since January when we made a trip to Las Vegas together. And I really miss him. When I was talking to him last night he must have told me he loved me at least 3-4 times.....something that isn't usual for him. I told my husband that it must be the meds.....and perhaps I should give him a few doses. But it was wonderful to hear the life back in him through his voice that I haven't heard in so long. I know that when you have experienced something like what you and my brother have, where your life has been so drastically changed and all of a sudden you can do the things that many of us take for granted again, you can't help but be happy. I am praying that you & all here will be able to experience such happiness soon.

    Please continue to keep us posted and know that each & every day that you are in my thoughts & prayers....Goody

    Last edited by goody2shuz; 06-17-2005 at 05:40 AM.

     
    Old 07-01-2005, 11:50 AM   #79
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Well just wanted to update you on what has been going on.Got good news and bad news. I went to see another neurologist (my old boss). He felt on my first exam that i did have neuro issues going on unlike the other neurologist. He felt it was demyelating disease. He did a BEAR test which checks your brain wave function which came back abnormal for 2 of the my brain wave functions. He did an SEP of my lower extremeties (which is basicallly like put a tens unit on your nerve and seeing how long it takes to get to your brain) that also came back very abnormal. He then did a VEP (visual envoked potential) which came back very abnormal (you stare at a black box in a center of a tv screen and white and black checkered pattern of boxes flash around it, you have to concentrate on the center box), which came back abnormal and showed even with my glasses on i was having vision problems.Then he read my MRI report about the "two areas of white matter", fortunately i had gotten him the films and when he looked at them he called my husband and i up to look at them with him, which i knew wasn't good from my medical backround i had seen 5 areas there actually was 6 areas very fresh and specific areas of demyelination present. Which blew him away how the drs could of missed this and with my clinical signs to boot. He started me on Solu-medrol (nice strong steroid) which i have to give myself via iv once a day over a period of 3 days by bolus. Just finished that this morning and removed my iv, what a great learning experience. Just call me Nurse Jen. lol He is also starting me on Avonex injections which i have to give myself one injection every saturday evening for at least a year. So no baby for at least a year, very disappointed about that. He is hoping there is no permenant damage yet and we have caught it early enough and the Avonex will stop the progression or slow it down. He said my prognosis is good but nothing is a guarantee in life and only time will tell. If it does help and stop it then it most like we have caught it early enough if it does not or i relapse then i have MS. His PA told me he does not like to label it as MS but that is probably most likely what we are dealing with. It was probably in a bad exasterbation period when it triggered the POTS which has gotten better. My BP is alot more stable still get a tachy HR at times and chest pain. At least we know what caused it and now how to treat it. I start the Avonex this sat evening never gave my self an injection let alone intra-muscular , my husband volunteered if i chicken out. Told i should be fine besides he can pay me back for being so cranky over the last 9 months..lol not going to let that happen. Well only time will tell what is going to happen but i will definetly keep you updated on my progress.I'm trying not to let my diagnosis get me depressed and trying to stay very optimistic through this all.

    I hope everything is going well with you both and have a wonderful 4th of July weekend and a safe one. You are both continually in my prayers.

    Jen

     
    Old 07-09-2005, 09:30 PM   #80
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hey ladies!

    I just thought I would send in a quick update...things are not the best. I have recently been trying to use a pill form of the Lidocaine treatment I have been getting for my arm, but it's a no go...MAJOR stomach cramps, nausea, diarehhia, and MAJOR chest pains...so, back to the IV infusions twice a week for 4 hrs each!

    The dizziness stuff is such a mess. It was going well for a few days and then for the last 3 or so it has been awful again. I think my body is adjusting to the Midodrine dosage. Yesterday I went to the chiropractor for my headaches, and my blood pressure was 93/78! It was funny because at first the nurse couldn't find it AT ALL! Then she took it again and said that can't be right...I said 'is it low?' she said it was, too low and took it again. It was the 93/78, which I said, that could very well be right, I was feeling pretty lightheaded. She said that was the lowest BP she had ever measured! Funny.

    Anyway...today was a very bad day. I went errand running with my 6 yr old and I was getting so lightheaded, I actually asked him if he could tell me our phone number. He could repeat it, so I told him that if something happens to mommy to tell someone to call dad at home. How awful is that to have to tell your 6 yr old that?

    Something else that has been going on...anyone experiencing this? My vision is going...About 4 months ago I went to the eye dr (I has broke my computer glasses) to get new ones. I got some and they were working great. About the past 4 weeks or so I have to say that it is getting worse in a hurry. Sometimes to the point I actually have a VERY hard time seeing ANYTHING and have a feeling like I am going to have NO vision what so ever very soon. Today while driving I actually thought that my visions was going to totally black out. Not pass out, just lose my vision. I have made a comment to my dr. about it, but I think that it is time to take it a little more seriously. Anyone else having this happen to them? Then I come home and am so NAUSEATED I can't stand it. What a crappy day!

    Well...Monday I see my dr again and have another infusion. (I see my dr twice a week right now!) We might try a nicotine patch to help with keeping my blood vessels constricted enough to keep the blood to my head. Oh...and how bad is this...I had a prescription called into Target the other day, but I was looking for some tylenol for my son first. Well, when I got to the counter the girl at the check out already had my prescription and said "Hi Lisa! How are you today!" I was so surprised she knew my name. Although I shouldn't be...I am at the pharmacy at least twice a week to get meds. I should own a piece of Target at this point!

    Well...I hope everyone is having a good weekend! I'll update soon!

    ~Lisa

     
    Old 07-10-2005, 07:25 AM   #81
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Lisa,
    I know I haven't been a part of this discussion for a long time but wanted to just say that I am very sorry you are still not feeling well.

    Your vision loss is of great concern. Has anyone ever performed an MRI of your PITUITARY (not just your brain) to see if you have a mass pushing on your optic chiasm, the area where your optic nerves cross at the base of your brain? There are certain types of pituitary tumors that can cause your symptoms, including vision issues. This is not a part of being dizzy, Lisa. You have to see an ophthalmoloigst and pronto to be certain you do not end up with permanent damage. Regular docs often don't know much about vision.

    I know I have asked this before but you have never answered...Have you had your aldosterone levels checked? And..are you on florinef as well as the other medications?

    I know one person with POTS and she has said countless times that with all of the medications she is on, the one thing that helps the most is taking lots of salt with her diet.

    I really hope that you can find some relief soon. Please take care of yourself,
    Sadie

     
    Old 07-10-2005, 07:44 AM   #82
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hi Jen & Lisa Wow you guys have been busy and what I love about you two is that even though everything has turned your worlds upside down you still have great attitudes and look at things in a positive light which I truly believes makes a big difference in how things work out.


    Jen....what is the latest??? Are the doctors still leaning towards MS??? I hope they caught it early enough that it won't cause you too much pain and debilitate you too badly. I think at least when they find out exactly what it is that we're up against and the treatment for it, even though it is something that we weren't prepared for, it makes it so much better to accept rather than living with the unknown and pulling at straws as to how to treat it. It looks as if you may have your life back, one that you can manage and overcome the obstacles that come before you. With your wonderful sense of humor and outlook on life...there is no doubt in my mind that you will be okay. So we have to wait another year for a baby....we'll be here to celebrate that good news with you when that time comes.

    Lisa ~ I pray that they come up with a diagnosis and treatment plan that works for you as well. Do not worry about your 6 year old, so long as he knows that you are okay and that he is helping out and supporting you he will understand. Your family will celebrate, as will we, once they find the right treatment that has you feeling better as well. We will continue to pray for you until that time comes.

    My brother is doing quite well.....I saw him Father's Day (well barely) he was so busy towing 10 kids on a banana boat with his jetboat.....everytime he came back in there were more kids lined up to go out!!! I had fun just watching him have fun after all that he has been through. I am sure that you guys will be back to living you lives again too.

    ((((HUGS))))) & prayers ~ Goody

    Last edited by goody2shuz; 07-10-2005 at 07:48 AM.

     
    Old 07-11-2005, 07:11 PM   #83
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Sadie -

    I am not on florinef...those levels when checked were okay. I did talk with my dr today about the vision stuff...when I went in I had such a pain behind my right eye it was AWFUL. We had to turn out the lights throughout my infusion treatment. My doc came in to check on me and we talked about everything plus the pain I was having. Unfortunately, it was also causing total blurriness out of my right eye, I couldn't focus on ANYTHING. I told him that I know if I went back to the eye dr that my prescription would be completely different my vision has changed so much. He asked when the last time I was to the eye dr was, I told him April, which is when I just got new glasses. He said my vision should not change like that that fast and that if it were headache related it would be gone when the headache was gone, but it is not. He told me that he is VERY concerned about it. He is calling the opthomologist tomorrow to get me in this week if possible. I told him too that I felt as if I was going to totally lose my vision this past weekend. He didn;t like the sound of that either. So, I am seeing him again on Friday. We are playing with some of my other meds to try to settle the dizzys. We are cutting back on the Nadolol and if that helps a little, then he is going to place me on some meds along the line of Ritalin. It should be an interesting week. I am a little concerned about this vision stuff though, I know something isn't right. I just really couldn't handle any bad news right now.

    So please keep your fingers crossed...I'll update when I can.

    Goody - I am so glad your brother sounds like he is doing well!

    ~Lisa

     
    Old 07-13-2005, 10:04 AM   #84
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    Wink Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Well here is the latest news on me..it has been confirmed i do have MS. We are hoping we have caught it in the early stages. I did get 3 iv bolus treatments of Solumedrol (nice steroid) which i infused myself at home. Just call me nurse Jen..lol.My husband was wonder if i was going to turn into ms. universal muscle bulging lol. I have also started on injections of Avonex which is one of the top intraferon beta 1a for the treatment of MS,which my husband so loving injects into my thigh every sat. Oh did i get sick from the first dose of that. My poor husband was ready to rush me to the hospital..i calmed him down and said let it take its course the phamplet and the dr said i would get flu like symptoms..man they weren't kidding that was an understatement. My vision is getting worse and still have the nasty dizzy spells and being off balance. Went to a pain management specialist monday,who was nice enough to clear up the fact that i do have MS in a very upfront and honest way..lol I have had such severe pain in my low back, legs and feet its been horrible. It has made it hard to even walk or sleep. They gave me darvocet and flexiril before i saw the pain management dr. that did nothing. I had an MRI of my lumbar spine done, which showed a herniated disc and mild spondylosis.He told me my pain is do to the MS and he strongly feels i have something wrong with my autonamic nervous system, some type of abnormality and wanted me to have a cortisol stress test done. he thinks the pain is a combination of those two things. He feels it has nothing to do with the herniation because of the severe cramping i get in my toes, feet and other muscles in my legs, which can start with my feet and go up my legs, also get numb areas and severe tingling. He started me on nortriptyline for the pain not doing to much at this point but will increase the dose next week. He also gave me amantadine for the severe fatigue. Don't care for that much makes me very anxious and gives me the shakes, makes my head feel weird, so we are going to pass on that, besides makes me even more tachy then normal lol like i need that. He told me everything will take time to work and hopefully there is no permanat damage done. We just pray that the Avonex stops the progression, or at least slows it down. But the drs think that the MS triggered the POTS which is slowly staightening out my bp usually 90/56 HR is still 90-140 give or take lol. Not running any marathons yet but maybe in a few months. The heat has really made things worse i go out mostly in the evening when it cools off ,if i go out during the day i need shade or get some serious headaches and just feel really bad. The headaches did start to get better but are slowly getting worse again. Who knows i try not to dwell on it and take it as it comes.

    I hope you are doing well Lisa you may want to try the florinef it does help also with your BP thats why the dr had me on it and the midodrine together.

    Goody i'm so happy for your brother he sounds like he is doing well, i'd love to be on that banana boat get tugged around sounds like alot of fun...lol

    Jen

     
    Old 07-13-2005, 07:42 PM   #85
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Jen -

    Sorry to hear that is what you have...What testing did they do to determine that it was MS? They at first thought that maybe that is what I had when they started testing me ay back when. They have since then dismissed that, but with the vision problems I am starting to have, it really makes me wonder. It seems like I am out of the blue seeing all this stuff about MS and noting the vision issues you get with it - it sounds just like what is happening to me.

    Today I went in to the dr today and had an ultrasound done on both sides of my neck to make sure that I do not have a blood clot causing the vision stuff. Afterwards I was feeling so awful (my neck, shoulder and back were KILLING me) I went and asked my dr to see me and inject those spots with something to reduce the pain. I LOVE my dr because he said no problem. Then his nurse was so nice and asked me if I wanted to wait in the waiting room or if I wanted to go lay down while I waited. So I asked if I could go lay down, and she put me in a room that was ice cold. So instead, she went and got the leather recliner and put it in a nice room, where I got to recline and close my eyes while I waited.

    My dr came in and felt so bad...we talked about what was going on. I think we are going to do a MRI of my neck next week - we never did one since I hit my head - only a MRI and CT scan of my head. My chiro thinks I may have the herniated disc in my neck and today that is EXACTLY what it felt like. So he injected my neck/shoulder and back with some pain killer stuff. Talk about painful shots - I barely made it through. Then I went back to work and it got worse. He must have hit a nerve because I couldn't move my head or arm and the pain went down my arm and it even hurt to take a breath. I sat there and cried...it took a bit but at least it settled down a bit. It actually still hurts tonight. I am going in for an infusion on Fri morning so we are going to talk some more.

    We also took away my evening dose of Nadolol in hopes my bloodpressure would go up. It has been pretty low lately. He said that if the dizzys don't get any worse, that he is going to put me on Ritalin, which he hopes may help. The past 2 nights I wasn't able to tell if not taking the Nadolol made any difference because I felt so awful and came home and went straight to bed. Well, tonight I was up and cleaning the house for company that is coming and man, I can tell I haven't taken it. I am now parked in the chair it is so bad. So, I don't think what he has planned is going to work!

    Oh...and my dr thinks that my vision problem is due to the autonomic problems caused by POTS! He thinks that it is causing the lens of my eye to spasm which causes the vision problem. If that is the case, then there is nothing they can do about it, but try to get the POT under better control - and that seems to be the problem, getting that under control.

    So....life sucks right now because I don;t know what to do anymore and I am in such pain, dizzy or nauseated ALL the time. I can't take this anymore...this just isn't how a person who is 32 should be living!

    ARRGGHHHH!!!!!!!!!!

    Anyway...I'll update when I can!

    ~Lisa

     
    Old 07-27-2005, 06:42 AM   #86
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Jen & Lisa ~ It's been rather quiet here, just thought I would check in and also give you a little update.

    Jen ~ I hope that the meds they started yo on for MS are continuing to give you some relief. Please give us an update so we know how you are doing.

    Lisa ~ You sounded quite miserable last time you posted. How is your BP doing without the evening Naldalol??? I was hoping that somehow you would adjust and it would improve things.

    Well Goody has an update as well....my brother's chest pain has returned and his doctor thinks that he may be rejecting the pacemaker and starting with an infection again. He is back on the prednisone and will see the surgeon sometime this week/early next week. I just found out that his diagnosis is Autonomic Failure and very rare. He was beating around the bush when I asked him exactly what his diagnosis was and it doesn't sound good. Apparently it will be a case of juggling around meds in order to allow his blood pressure & pulse to function somewhat normally. It's difficult to even understand how this happened....but it only gets worse with stress and my brother's life is full of it. He's on a third marriage, has 6 kids, 2 ex wives and lives his life with visitation schedules I couldn't even manage. His newest wife is wonderful in terms of being supportive but it's almost as if his body is reacting to the craziness in his life. My 16 year old daughter is staying the summer with him as a mother's helper which I hope is taking some of the stress off of him. From my sister in laws reports she is of great help to them and manages the kids well allowing my brother and SIL some time to relax and go out on their own to recuperate from daily activities. I do find some comfort in knowing that my daughter is in a way reducing some of the stress.
    I guess I will know more next week about what comes next.

    I hope to hear some updates from everyone else as well. Please know that you are in my thoughts & prayers ~ Goody

    Last edited by goody2shuz; 07-27-2005 at 08:31 AM.

     
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