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    Old 08-07-2017, 10:56 AM   #1
    somebody84
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    Checking back in - posting in correct area

    I posted this on the Lupus board (as an update), but realized this might be a more appropriate place to post, since I don't know what I am dealing with, yet. I'm not sure how to move my original post....

    Hello. It's been awhile since I have posted. Last time I was on these boards my fiance and I were trying to get pregnant. I now have myself a beautiful 4 month old baby girl. I posted a sort of update on my old thread, but felt it might be better just to make a new one.

    I've taken the advice I've received on here and have been putting together a list of all my symptoms, the different diagnoses I have received over the years, and anything that has been flagged on my Sjogren'sblood work (what I was able to retrieve). Since I am not comfortable going back to my old rheumatologist (whom I never saw anyway. Just the PA).. I was able to find another rheumatologist who is a little bit further away, is a small practice and has great reviews. Third times a charm, right? I actually felt ok during my pregnancy, but now that I have had my baby, I am starting to feel all my usual symptoms again. I think it's time for a follow up.

    Anyway, I thought I'd list everything down that I am putting together for my appointment. If anyone has any suggestions, please let me know.

    Symptoms: Joint pain, morning stiffness, mouth sores, left sided facial / head pain, left sided neck pain (the left sided pain is more intense behind the eye, ear and the salivary gland areas), left sided back pain, and left sided arm pain, painful leg cramps (at least twice a month), chest pain (costcohondritis), rashes (itchy and non-itchy), sunburn rash (itchy, small bumps), palpations, stomach pain, easy brushing, rash over nose and cheeks that comes and goes, left eye pain, arm weakness (mainly left arm), chronic runny nose, spine discomfort (stiffness), senstiive skin (to the touch), and the list goes on. I'm sure I am forgetting some stuff.

    Diagnoses over the years:

    Raynaurds
    Epstein-Barr Virus
    Fibromyalgia (despite the lack of tender points)
    Myalgia + Myositis
    Tennis elbow ( I disagree. The pain has never gone away)
    Vitamin D Deficiency
    Rashes
    Neck Pain
    Fatigue
    Insomnia
    Optical Migraines
    Right Bundle Branch Block
    Chronic Pain
    ADD
    Anxiety
    IBS
    Gall Bladder Removal (no longer working)
    Spincter Order Dysfunction
    Bladder Prolapse (from delivery)

    In the past couple of years:
    Viral Meningitis
    Strep Throat
    Pleurisy
    Chronic Iridocyclitis
    Inaaprioate Sinus Tachycardia
    Suggestion of possible Gitelman Syndrome. No tests were ran.

    Diagnosed at Urgent Care before pregnancy:
    Polyarthralgia
    Butterfly Rash
    Other neutropenia
    Thrombocytopenia


    Flagged test results:

    2010:
    Alkaline Phosphatase - 32 Low
    Lactic Dehydrogenase - 103 Low
    EBV Capsid IgG >8.0 High - Suggestive of recent EBV infection

    2011: CRP - 10 High

    2012:
    ALB/Glob Ratio - 2.3 High
    Glucose - 120 High (the only time it's ever been high)
    Potassium 3.4 - Low (I've always had an issue with my potassium)

    2013:

    WBC - 14.3 H
    Absol Neutro - 13.0 H
    %Lymphs - 4.7 Low
    %Neutro - 90.7 High
    Potassium - 3.3 Low
    Calcium - 8.0 L

    2015:

    Alkaline Phosphatase, S - 36 Low
    Anti-DNA(DS) AB Qn- 7 Equivocal

    ER Visit from Pleurisy:
    Potassium - 3.1 L
    Alkaline Phosphatase - 40 Low
    Corrected Calcium - 8.5 Low
    Magnesium - 1.7 Low

    Lipase - 61 High
    Potassium - 3.5 Low
    TP - 6.2 Low

    2016:

    From Urgent Care:

    Rheumatoid Factor - 13 (the range was <13, so technically negative)?
    dsDNA - 6.0 H Indeterminate

    I also had blood work from my neurologist that I can't find, and my dsDNA was also Indeterminate.

    WBC - 3.3 L
    RDW% - 11.2 L
    PLT - 106 L

    ER visit later that week:

    WBC - 3.6 Low
    Hematocrit - 35.5 Low
    AST - 70 High
    ALT - 91 High


    And that's all I can locate currently. I do have a few photos of my rashes as well. Is this good enough to bring to the new rheum? Any thoughts of suggestions? I'm really hoping I can some more answers.... it's been over 6 years (at least), and the longer this goes on the more stuff that pops up.

     
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    Old 08-17-2017, 02:59 PM   #2
    somebody84
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    Re: Checking back in - posting in correct area

    I'm not sure if anyone is reading this, but in case they are I will continue posting updates..

    Since I last posted I had another follow up with my eye doctor and she was concerned. The inflammation in my left eye had gone up and she put me on some stronger steroid eye drops. She encouraged me to continue with my new rheumy appointment and was concerned about autoimmune conditions (based off my health history, too) and that the underlying condition needed to be treated in order for the uveitis to get better.

    Well! I had my appointment with the new rheumy today. She checked my joints, went over my symptom / diagnosis list, my past labs and the picture of my rashes. She mentioned RA and Lupus, but wanted to get more blood work. She also wants to get my medical records from my old rheumy. She said I had a couple swollen joints, but didn't feel an x-ray was needed, yet. She said she wasn't surprised that I felt better during my pregnancy. She said it's not uncommon for that to happen, and that a lot of times after one gives birth, a flare up can happen. She ordered a lot more blood work and said that we would figure this out. I'm feeling hopeful that I'lll finally get some answers. I should have my blood results before my next appointment. Either way she wants to see me in 2 weeks. She did advise that I try to keep out of the sun, but if I do go outside to use high SPF and try to cover up as much as possible.

     
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    Old 09-01-2017, 08:49 PM   #3
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    Re: Checking back in - posting in correct area

    Quote:
    Originally Posted by somebody84 View Post
    I'm not sure if anyone is reading this, but in case they are I will continue posting updates..

    Since I last posted I had another follow up with my eye doctor and she was concerned. The inflammation in my left eye had gone up and she put me on some stronger steroid eye drops. She encouraged me to continue with my new rheumy appointment and was concerned about autoimmune conditions (based off my health history, too) and that the underlying condition needed to be treated in order for the uveitis to get better.

    Well! I had my appointment with the new rheumy today. She checked my joints, went over my symptom / diagnosis list, my past labs and the picture of my rashes. She mentioned RA and Lupus, but wanted to get more blood work. She also wants to get my medical records from my old rheumy. She said I had a couple swollen joints, but didn't feel an x-ray was needed, yet. She said she wasn't surprised that I felt better during my pregnancy. She said it's not uncommon for that to happen, and that a lot of times after one gives birth, a flare up can happen. She ordered a lot more blood work and said that we would figure this out. I'm feeling hopeful that I'lll finally get some answers. I should have my blood results before my next appointment. Either way she wants to see me in 2 weeks. She did advise that I try to keep out of the sun, but if I do go outside to use high SPF and try to cover up as much as possible.
    You have many symptoms and labs consistent with autoimmune disease and sometimes People have more than one. Your rheum sounds like a good Dr and your test results should clarify what is going on. Lupus is a definite possibility and often worsens after childbirth, is better during pregnancy itself. I think you are close to getting answers and need to follow up on tests with rheum and see what she thinks. The good news is that once you get diagnosed, treatment will help you feel better in time, not immediately, but something to look forward to. Best wishes. I have had lupus for 35 years, so understand your angst and concerns. Don't give up trying to find solutions!

     
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    Old 09-02-2017, 09:12 AM   #4
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    Re: Checking back in - posting in correct area

    It's good you are continuing to seek the answers and that your Rheumy sounds like a much more proactive one than the last. Autoimmune loves to party together....unfortunately.

    Are you on any medications at this point?

    Have you considered genetic testing as to know what you could pass down to your children so that decisions might be made considering that aspect?

    Regarding your rashes....are they more surface or farther into the tissue?

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    Last edited by quincy; 09-02-2017 at 09:13 AM.

     
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    Old 09-02-2017, 11:45 AM   #5
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    Re: Checking back in - posting in correct area

    Thanks for the reply ladybud and quincy.

    I just had my follow up appointment this past Thursday. She went over some of my past lab results and made copies of certain ones. She also looked over my symptom diary I was keeping in-between my appointments with her. She also requested my records from my eye doctor (she wants to see what the inflammation level of my eye is).

    She had originally suspected ankylosing spondylitis due to my chronic eye inflammation but the hla b27 test came back normal. She said most of my labs actually came back normal aside from some ketones in my urine (it's happened before) and my dsDNA being indeterminate again. But, based off my symptoms and some previous lab work she believes something is going on and she wants to figure out what it is. She also says that labs won't always indicate what is happening and the most important thing right now are my symptoms. As of right now, she suspects lupus or a lupus like disease and had me get additional blood work called Avise. I guess it's new testing and is more sensitive and more accurate.

    In the mean time she is going to have me start on a low dose of steroids for a week. It's called Methylprednisolone. Depending on the level of eye inflammation I have she wants to start me on plaquenil, but she also wants to wait until she gets my most current labs back. She will call when those come in and we will determine what to do next.

    Quincy - as far as the genetic testing goes I've considered it. I already have 3 kids and I do keep a close eye on their health. They also have regular checkups. If my rheumy does figure out what is going on I will address it with the kids' doctors as well. And the rash questions, what do you mean are they more surface or further in the tissues?

    Last edited by somebody84; 09-02-2017 at 12:29 PM.

     
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    Old 09-12-2017, 08:20 AM   #6
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    Re: Checking back in - posting in correct area

    Sorry for the late reply......yes, I meant more scraped looking or blistery ulcer type rather than just red looking.

    How did you do on the steroid med?

    Any more insight as per your recent test results?

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    Old 09-12-2017, 08:35 PM   #7
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    Re: Checking back in - posting in correct area

    Quote:
    Originally Posted by quincy View Post
    Sorry for the late reply......yes, I meant more scraped looking or blistery ulcer type rather than just red looking.

    How did you do on the steroid med?

    Any more insight as per your recent test results?

    q

    Quincy - Ohh ok. It depends. My facial rash is just redness that goes over my nose and cheeks. My arms and chest also get red. The rash I got from the sun on my chest looked like bumps. Almost hive like. Same with one of the rashes I got on my arms. The rash I got on my lower legs started out scaly looking and then became more blister like. It's hard to explain, but it kept a circular appearance. I kept photos of all of these for the doctor. I also get a lacy rash from time to time.

    The steroid med was wonderful. It didn't help 100%, but it helped immensely. It relived so much of my pain. It was only for a week, and as I tapered off of it, the pain slowly started to come back. I have been off of it for a few days now and am back in pain again, and my uveitis is really bothering me. I am also developing ulcers in my mouth.

    I haven't gotten the results back on my most recent tests. My doctor said it could take up to 2 weeks to get the Avise tests back because they are sent out of state. It'll be 2 weeks on Thursday.

    Last edited by somebody84; 09-12-2017 at 08:36 PM.

     
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    Old 09-13-2017, 10:19 AM   #8
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    Re: Checking back in - posting in correct area

    Oh wow....I didn't realise you had you had a myriad of rash types. I had rashes from sun exposure as you describe in the late '70s. I was on the pill at that time, so assumed it was a contributing factor.

    My late MIL, who had Sjogren's, had rash with lesions...but started in her head as redness and extreme redness, mouth sores and redness and pain, and eventually all over her body round lesions that scabbed, weeped and sort of dried up, but where one improved, more popped up. I do , however, suspect she has lupus. Maybe Sjogren's is under that spectrum or in addition to. My sister has Sjogren's but never any body or mouth rashes. She does, however have eye issues, probabably uveitis. She now has neuropathy....from Sjogren's hasn't been verified, but is in the symptoms list. She also has Ankylosing Spondylitis as you do as well as arthritis in hands and feet (deforming).

    My MIL also had vitilligo many years previous, so autoimmune process was set in gear. She seemed to have stumped doctors once her rash and lesions started....but some doctors won't go through a process that requires deeper research or thought energy.

    I'm wondering if your facial rash could be rosacea? My best friend has rosacea, and it has affected her eyes as well.

    There are immunosuppressant medications that might be of help if you're diagnosed. They all have side effects. My sister is on Imuran, and it seems to have helped her incidence of eye and nose symptoms.
    Sulfasalazine is used for joint and body pain. Have you tried plaquinol?

    I hope you find answers. Please keep us updated when you get your results.

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    Last edited by quincy; 09-13-2017 at 10:23 AM.

     
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    Old 09-13-2017, 12:31 PM   #9
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    Re: Checking back in - posting in correct area

    Quote:
    Originally Posted by quincy View Post
    Oh wow....I didn't realise you had you had a myriad of rash types. I had rashes from sun exposure as you describe in the late '70s. I was on the pill at that time, so assumed it was a contributing factor.

    My late MIL, who had Sjogren's, had rash with lesions...but started in her head as redness and extreme redness, mouth sores and redness and pain, and eventually all over her body round lesions that scabbed, weeped and sort of dried up, but where one improved, more popped up. I do , however, suspect she has lupus. Maybe Sjogren's is under that spectrum or in addition to. My sister has Sjogren's but never any body or mouth rashes. She does, however have eye issues, probabably uveitis. She now has neuropathy....from Sjogren's hasn't been verified, but is in the symptoms list. She also has Ankylosing Spondylitis as you do as well as arthritis in hands and feet (deforming).

    My MIL also had vitilligo many years previous, so autoimmune process was set in gear. She seemed to have stumped doctors once her rash and lesions started....but some doctors won't go through a process that requires deeper research or thought energy.

    I'm wondering if your facial rash could be rosacea? My best friend has rosacea, and it has affected her eyes as well.

    There are immunosuppressant medications that might be of help if you're diagnosed. They all have side effects. My sister is on Imuran, and it seems to have helped her incidence of eye and nose symptoms.
    Sulfasalazine is used for joint and body pain. Have you tried plaquinol?

    I hope you find answers. Please keep us updated when you get your results.

    q
    The part about rosacea is interesting, but I do not think that is what it is. I do not fit the criteria for rosacea, nor do I get any pimple or cysts. The redness on my face typically comes when I am exposed to the sun, or when I am feeling unwell. My eye doctor also feels my eye inflammation is due to an auto immune disorder - especially based on my symptoms. My rheumy has seen the photos of all my rashes, and that is one reason why she is leaning towards lupus (along with my other symptoms), but I suppose the new blood results will give her more information. She thought it could be AS at first, but the gene came back negative.

    I have not tried plaquinol, but my rheumy has discussed starting me on it. However, she wanted to wait until she got my eye inflammation levels from my eye doctor, and my new blood results. I am hoping she calls me soon.

    It sounds like you had some family history of AI conditions as well (like with your sister). Have you been tested at all? Has anyone done further testing on your MIL to determine if she has overlapping AI conditions with her Sjogren's?

    And thank you. I will post when I have my results.

     
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    Old 09-14-2017, 10:02 AM   #10
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    Re: Checking back in - posting in correct area

    Hi....i misread your AS results. Mine is negative...my dad had it and my sister have it. I have depression/anxiety (moms side) Ulcerative Colitis, and there is a connection to AS genetically. But I suspect my mom might have had it, but she smoked (seems it can help keep UC shmptoms in check...and I don't believe all the bleeding and urgency was from her "piles"). I also have Primary Biliary Cholangitis, Asthma and small areas of eczema (from my mom's side and my brother has asthma also), and Benign Paroxysmal Positional Vertigo which my mom had. Now is high blood pressure and since heart disease runs on my mom's side, I best deal with it. I also have a high B12....definitely connected to liver I'm sure.

    I sure hope your new blood test reveal a direction of diagnosis. It's frustrating and emotional to deal with any chronic health issue or diease...the not knowing for me is difficult and plays on my psyche.

    My MIL died in 2012....she went through 2 months of hell in the hospital. Everyday was a shock as to what NOW are we dealing with. Hospital neglect and fragmented care and too much assuming played a huge part in it.
    I wish we had an autopsy done..... because her situation was a far more than any of us could have imagined.

    Please let me know about your results.

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    Last edited by quincy; 09-14-2017 at 10:03 AM.

     
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    Old 09-26-2017, 09:54 AM   #11
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    Re: Checking back in - posting in correct area

    Quote:
    Originally Posted by quincy View Post
    Hi....i misread your AS results. Mine is negative...my dad had it and my sister have it. I have depression/anxiety (moms side) Ulcerative Colitis, and there is a connection to AS genetically. But I suspect my mom might have had it, but she smoked (seems it can help keep UC shmptoms in check...and I don't believe all the bleeding and urgency was from her "piles"). I also have Primary Biliary Cholangitis, Asthma and small areas of eczema (from my mom's side and my brother has asthma also), and Benign Paroxysmal Positional Vertigo which my mom had. Now is high blood pressure and since heart disease runs on my mom's side, I best deal with it. I also have a high B12....definitely connected to liver I'm sure.

    I sure hope your new blood test reveal a direction of diagnosis. It's frustrating and emotional to deal with any chronic health issue or diease...the not knowing for me is difficult and plays on my psyche.

    My MIL died in 2012....she went through 2 months of hell in the hospital. Everyday was a shock as to what NOW are we dealing with. Hospital neglect and fragmented care and too much assuming played a huge part in it.
    I wish we had an autopsy done..... because her situation was a far more than any of us could have imagined.

    Please let me know about your results.

    q
    As far as your AS results go, I know you can still have it and lack the gene. Have you ever had an MRI done of the spine or hips? Iím sorry to hear you have UC. I hear its quite uncomfortable and painful. I have never heard of Primary Biliary Cholangitis. Do the doctors think its a primary condition or caused by anything? Are you being treated for it? Are you currently seeing a doctor who is running tests and monitoring your symptoms?

    Iím so sorry to hear about your MIL (((hugs)))

     
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    Old 09-26-2017, 10:08 AM   #12
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    Re: Checking back in - posting in correct area

    UPDATE:

    Last time I was here I had just seen my rheumy who ordered the Avise test. It's suppose to be new testing geared towards lupus. Well, I got a copy of my results from the lab via fax and everything looks within range. My ANA was 1 point off from being positive and the report says the results show *a low likelihood for SLE. I don't see my rheumy until next month to go over the results. However, she did prescribe a 21 day low dose of steroids since it seemed to be helping.

    Now for something interesting. I just had a follow up with my neurologist to talk about my headaches, my left sided facial pain, pain in the left side of my body, and pain and weakness in my left arm. She wanted to run her own lab work, do another brain MRI, and an MRI of my cervical spine. I'll get the MRI results this week. She also wants me to come in for an EMG. Other than that we just discussed treatment options for my migraines.

    Well...my labs came in today and my rdw(sd) results were low, my creatine levels were barely low, my anti-dsDNA was indeterminate again, and my Histone antibodies were moderate high... which is interesting. This is the first time I am actually testing positive for an antibody, after all these years, and so much blood work. I know this antibody can be seen in SLE or drug induced lupus - and I have not been taking any drugs that would cause this. I sent the results over to my rheumy and am waiting to follow up with my neurologist. Is my blood finally doing something..?!

    Last edited by somebody84; 09-26-2017 at 10:12 AM.

     
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    Old 03-14-2018, 12:14 PM   #13
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    Re: Checking back in - posting in correct area

    Update:

    Not much to update, really. I am still on plaquenil, and have started taking coenzyme 10q to help with my fatigue, as well as tumeric (suggestions from my doctor). I have also been developing these circular like rashes on my arms. My doctor said to try steroid cream on them, and if they continue to see a dermatologist and possibly get a biopsy. She also tested my vitamin D level, which was pretty low. I'm waiting to find out the next steps on that (she's supposed to call me). I've seen an eye doctor about my recurrent iridocyclitis, and its currently under control. I am also being treated for my migraines, however, my stomach has been acting up again. She still isn't sure if its RA or possible Lupus, as the only anti-bodies that have come back are my anti-dsDNA (indeterminate), and anti-histone antibodies (moderate high, and not drug induced. I wasn't on any medications). For now she has it listed as polyarthropathy, raynaurds, recurrent iridocyclitis, cytopenia, vitamin D deficiency, and fatigue (current listed problems). My joint pain seems to be increasing so we might increase my plaquenil to 2 tablets a day (taking 1 1/2 currently). Otherwise, I don't see her for another 6 months, unless I get worse. That is all I have to report for now. I will update when I can. Thank you for listening.

    Last edited by somebody84; 03-14-2018 at 12:17 PM.

     
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