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Old 06-09-2008, 01:23 PM   #1
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Post-Polio and reflexes - still strong or reduced?

Hello All,

I am pretty new to this site......have been writing about a week. My question to all of you is this: Do any of you still have pretty strong reflexes, or do you all have reduced reflexes? This is an important question to me, because my neurologists are basing their diagnosis (of ALS) all on my still strong reflexes. They tell me that you always have reduced reflexes with post-polio syndrome. Is this true? Even though I was never diagnosed with polio as a child, I could very well have had it because BOTH of my parents AND my childhood friend all got it in 1951, so I was right in the middle of the contagious virus at the time. I understand that many people who had flu-like symptoms with the polio virus in the 50's are still getting PPS now. Please let me know if you have any answers about reflexes.

God Bless all of you.....you are in my prayers.

Carolyn

 
Old 06-09-2008, 03:00 PM   #2
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Janet W. HB User
Re: Post-Polio and reflexes - still strong or reduced?

Carolyn- I do not believe I have problems so much with reflexes. But not 100percent sure... I did e-mail my doctor to see if he has an answer for me- so as soon as he gets back to me I will see what he says. Usually he is good about e-mailing in the morning.. Hopefully someone else can also shed some light on this for you..

Bless Yah Hugs Janet

I surely do love the garden- although it has gotten much smaller...LOL

 
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Old 06-09-2008, 08:54 PM   #3
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Re: Post-Polio and reflexes - still strong or reduced?

Hi everyone! Carolyn I don't know about my reflexes either. I have never been officially diagonosed with PPS. Kinda came to that conclusion myself. LOL Talking to other survivors has helped me come to that conclusion and my new orthopedic Dr. thinks I have all the symptons. Sorry I couldn't give you some insight but nobody has really examined me good. I have been hurting in the back of my legs from the knees up. At first it was just on the right side and the Dr. thought it was siatic nerve. He put me on an antiflammatory med. but I couldn't take it. It hurt my stomach, then my leg side started hurting too and he put me on Baclofen. He said they were trying to spasm. This has really helped. I take 3, 10mg. a day. Way before that, like a couple of years ago I had the muscle twitches bad, especially in my right leg. I took 2 Benadryls everynight just to get some sleep then my regular Dr. showed me an article from the newspaper that a Dr. wrote about putting a bar of soap in the bed with you around the leg area. Believe it or not it worked. Never have them anymore. It seems like I go thru different stages with my symptons. Its always changing. The only thing that doesn't change is my fatigue level and the pain in both knees. Cheryl I've been thinking about you too! Are you on vacation? Love you all, Phyllis

 
Old 06-10-2008, 02:10 PM   #4
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Re: Post-Polio and reflexes - still strong or reduced?

Hi - I did get an answer back from the doctor.. He said that sometimes PPSers have increased reflexes. So as far as all having reduced reflexes, I would say Wrong... My reflexes were not too bad if I remember-LOL?

Have you had an actual test for ALS? I do believe there is a test. To have PPS, it is exclusion of other illnesses/diseases. There is no real test to say we have PPS(unfortunately)- I think doctors just shy away so much from this(Not all) but alot do- because they just do not have any clues.

I surely hope they can figure out a way to run a test and know it is PPS. So many have been told they have ALS because of the similiarties of PPS and ALS.

Another thing of PPS is 'Brain Fog' and word finding- Have you been in the middle of sentences and cannot complete that sentience(the word just does not come out?) This happens to me daily and used to when I was at work- I always had people fill in the word or words for me... Poor people but I can take it-LOL.

Huge Hugs and Bless all Janet

 
Old 06-10-2008, 10:09 PM   #5
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Re: Post-Polio and reflexes - still strong or reduced?

I find your story about the bar of soap very interesting.....and I want to know more. What is the explanation behind it? I would absolutely give anything to quiet the twitches......sometimes they are worse than other times. They are everywhere....I even feel them in my face sometimes. I have started taking neurontin to see if it helps. My best to you Phyllis, and to everyone.
Carolyn

 
Old 06-10-2008, 10:24 PM   #6
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Re: Post-Polio and reflexes - still strong or reduced?

Dear Janet,

Thank you so much for asking your doctor about PPS and reflexes. I can't tell you how much I am looking forward to passing on the information to my new doctor. As I said before, I am in the process of changing health care providers so I don't get to see my new doctor until July. Thank you so very, very much. It is a relief to here this from you. I was very surprised that my doctor based his diagnosis of ALS and not PPS on the fact that I have increased reflexes. Guess doctors don't know much do they!! Sounds like your doctor has knowledge of PPS.

As far as tests for ALS.......according to the ALS Foundation there are a number of tests that a patient should have to diagnose it - 1)MRI 2)EMG 3)Lumbar Puncture 4) muscle biopsy 5)nerve biopsy 6)myelogram of cervical spine 7)extensive blood and urine studies. I have only had an MRI and an EMG and neither one confirms ALS at all. I had only basic blood work done, nothing extensive, and all they checked for was protein and glucose in my urine. I asked Kaiser if I could have the rest of the tests, but they basically said NO. They say that a lumbar puncture, muscle/nerve biopsy, and myelogram are all too invasive. Go figure?????? Anyway, I am hoping that my new doctor agrees to do these tests. I really don't care if they are "invasive." It would be nice to have a definitive answer. However, as I said before, sometimes we must go through life without answers.

Do you get around OK? Can you still walk? I use forearm crutches and walk, but get tired really fast. I use a scooter whenever I can. I can hardly make it up my stairs and am having a company come out and measure and give me an estimate on a stair lift. Looks like it may cost $5000......ouch. I can hardly afford it, but sure do need to get upstairs. I have no bedroom downstairs. I called another company in Sacramento (California) and they wanted $13,000!!!! I almost passed out when I heard the price!! When I bought my house 10 years ago I loved the fact that it has two stories......don't love it so much now!

Hope you are well. Bless you for writing back to me. Please let me and everyone else know how you are doing. You are in my prayers.
Carolyn

 
Old 06-11-2008, 11:41 AM   #7
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Re: Post-Polio and reflexes - still strong or reduced?

Carolyn- It just gets me nuts to know that these doctors would right off say you have ALS..... But as I have read about PPS, this is what some doctors have told their patients and than they find out they have PPS... Sounds like you have some pretty extensive testing already. Seems you should not have to go through alot to determine ALS- I had some blood work down and the fact I had Paralytic Polio- I went to a well known PPS specialist and was Diagnosed.

Boy I feel for you- Have you tried a Physiatrist? If you can find one just make sure they know PPS/Polio(even though they all should) they do not. I first went to one around here and he told me I know more about PPS/Polio than he did- smart fellow(at least he was honest-HA!)

It is getting harder for me to get around but I do- I have both legs is AFO's and the forearm crutches-(those crutches are really getting to me though- so I do not use them when my arms and shoulders hurt)- I use electric carts in stores and stil awaiting a PC from my insurance- I am allowed only so many steps per day and I know I have exceeded that - rest and pace - I keep telling myself- it is difficult- I also take care of my sick hubby- (even though I think he takes care of me somedays more now -LOL) He has been awaiting a transplant for over 4-1/2 years- so he goes through alot of times of doctors different meds and just cannot do things- I tell him together we make a person- that is true love. I have to do all the driving and I noticed this is also getting more difficult to do- so I have to rest in between and try and save these dang gone arms-LOL.

Take care God Bless - Janet

 
Old 06-12-2008, 05:43 AM   #8
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Re: Post-Polio and reflexes - still strong or reduced?

Carolyn,

i would agree with Janet,go see a Physiatrist...when i first found out about PPS,i could not figure out what kinda doctor i needed to see,i always dealt with orthopedics all my life,but nowadays its hard to find one that is even familiar with polio anymore...so finally,i decided to go to my primary care doctor(was due for a physical anyway),told him about the problems in my polio leg and foot,and before i even mentioned PPS,he said that polio people were having problems now and mentioned post polio syndrome,so that told me he was familiar with it then,but all he did was treat me with Neurontin and a mild pain killer,and rush in and rush out,so couldnt even ask questions..did ask him about leg braces and he said a lot of polio people were ending back up in braces again,so should go back to my orthopedic doctor to have one made...well i didnt like my last orthopedic doctor,so i tried a new one this time,he took xrays of my knee and pelvic area and i have a lot of arthritis in my hips and knee,said i would be looking at hip replacement within five years,possibly two years,and knee replacement within ten years...he also referred me to a Physiatrist and a Neurologist..the Physiatrist diagnosed me with PPS,had an MRI and came back fine...went to Neurologist next,she says she dont think its so much as PPS,as it is the deformity and several surgeries i've had..but yet then,she tells me i cant do this work much longer as i'll get worse and lose it other areas,would be lucky to make it much past a year and a half(my 20yrs.then),and would support me as to going on disability..she had an EMG done,showed the nerves to be ok,but have no muscles left in lower leg at all,and the polio affected my spine..he also made a comment that threw me,he said there were differrent types of post polio syndrome and one of them was that the polio itself was coming back,and at least that was not happening to me...well i never heard such a thing in all the reading i've done on this...and the Neurologist said he was more familiar with PPS,and is why she had him do the EMG..and always,i think of questions after i've gone..i am now learning to write down everything and write down how i feel each day and where the pain is then,because i never had to pay such attention to my body before now...but ya know carolyn,when i first found this site and listening to others stories,i feel like i'm healthy compared to everybody here,and really feel i dont have the right to complain...but it also too,lets me know what will happen later...i did buy my house ten years ago with the idea in my head that stairs will be hard to do,when i got much older,as it can be for anybody old ya know...still had a basement with laundry machines down there though,and i've gotten now to where i do laundry just once a week,on my day off,to avoid those stairs...

so i think too carolyn,try a Physiatrist..my primary care doctor did also have blood work done on me,to rule out anything else..well hope everybody is doing ok...cheryl

 
Old 06-12-2008, 03:55 PM   #9
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Re: Post-Polio and reflexes - still strong or reduced?

Dear Janet - Thanks for sharing. I wish the very best for your husband. Sometimes I wish I would have stayed married myself because it is hard to be along and sick, but I do believe I made the right choice. I am thankful that I was married because I have two terrific children, girl 31 (not a girl anymore!), and boy 28 (same goes for him). They come to visit on the weekends (not every weekend) and help with things I cannot do.

I don't think I have ever heard of a Psysiatrist, and I thought I was pretty "up" on things. Guess I have a lot to learn. What exactly does this type of doctor specialize in? I am hoping that once I switch over to my new health care provider that I can see a PPS specialist. Yes, it is pretty awful for my doctors to tell me I have ALS and not even listen to me about polio. I talked to my Dad last night about what it was like in 1950, and he said my whole neighborhood came down with polio. The health dept. was out searching people's homes and testing everything to try and figure out a cause. Interesting. He and my Mom were in the hospital for a long time, so I could have gotten sick and they wouldn't have even known about it. I stayed with my grandmother at the time, but she has since passed away so I can't ask her anything. Anyway, I am sure I had polio, just not sick enough for hospitalization. But still, no doctors would listen to me about it because they said I can't possibly have PPS because of my strong reflexes. Well, obviously, after what your doctor said, that's not true. Guess I have to educate the doctors!

I use forearm crutches too, and am just getting used to using two. My left foot doesn't work anymore.....I can barely move my toes, so I wear an AFO too. When you said that you are getting a PC, what exactly do you mean?

Thank you again for asking your doc about reflexes. I had tears when I read your reply. ALS is very scary, and now I am not worried about it anymore.

Take care, God Bless
Carolyn

 
Old 06-12-2008, 08:54 PM   #10
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Re: Post-Polio and reflexes - still strong or reduced?

Carolyn don't feel bad. I didn't know what a physiatrist was either until I started reading about them from Cheryl, Janet and others. I typed it in on my search bar and read about them then found 2 Drs. in Jackson, Tn. which is about 52 miles from here. Like I said I've really diagonosed myself over the years cause there was no where to go. I will be 60 next month and have been going down hill for about 10 years now. I went from one crutch, then two, then a long leg brace for my back knee, from a manual chair to a PC or power chair. I can't hardly stand at all without the brace and it is so heavy and tiresome to wear in the house. My muscles are literally gone I think and both knees hurt so bad. I'm looking into getting a lift recliner now but they cost $1,100.00 and medicare won't pay any cause they paid for my PC. Carolyn about the bar of soap in the bed, I don't know the reasoning behind it but I really think it helped me. I joke about having a king size bed and nothing between me and my husband of almost 40 yrs. but a bar of soap. LOL That didn't sound good did it. Love you all, going to bed, Phyllis

 
Old 06-12-2008, 09:40 PM   #11
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Re: Post-Polio and reflexes - still strong or reduced?

Carolyn- Don't be sorry- that is why we have to stick together and be our own advocates with PPS- Physiatry came about when Polio started making its way more in the US- I believe back in the 40's- They are trained as a muscular/skeletal specialists..

It stinks we have to train our doctors- but if you can find a PPS specialist when you get different insurance, this should surely help you. I pray you find the right answers.

When I spoke about a PC that is a Power Chair- if anything to help safe my energy and get me around better..It has taken me over a year to come to this decision. If it is going to help me live better than I am all for it...

There is so much to learn about PPS and to actually know what the Polio Virus really did to our bodies. whether we were hospitalized or not. When I seen my Polio Specialist last year- I had commented that I only had a mild case of Polio- He commented back he did not think there was a mild case of Polio...

I am so glad you are more relieved- I have read alot of poor people getting told they have ALS- this sounds so cruel.. I wish and hope the best for you.

Just remember You are not alone and we are all here for you..

Phyllis - I heard something about the bar of soap somewhere before- Hey whatever works...LOL.

Love & Hugs Janet

 
Old 06-13-2008, 02:07 AM   #12
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Re: Post-Polio and reflexes - still strong or reduced?

Carolyn,

i too never had heard of a Physiatrist before,till reading about all this PPS and talking with Janet,because Janet was here when i came to this site,and she helped answer questions for me too...

i never was hospitalized neither carolyn when i got polio...my mom had even had me on polio shots,had two of them,then she took me to get my next one,and i was sick with a cold and they wouldnt give it to me while i was sick...we were in the military at the time,my mom told me i kept falling down,and military doctors couldnt figure out what was wrong,so finally she took me to a civilian doctor,and he picked up on it right away that i had had polio,and i was 3 yrs. old at the time...and he determined i'd have gotten it around 10 months old,and said when it hit,it hit hard and fast...so then came the braces...and i had the drop foot too,but i had to wait till i was 9 years old for surgery,they did a tendon transfer,and then a triple arthrodesis on that foot...i too think mine was a mild case,as others were so much worse,just from pictures i had seen,cuz i never knew anyone all my life that had polio...and here i've heard others mention having umpteen surgeries on them for polio...the polio affected my left leg and my left foot(drop foot),leg is shorter and skinnier,and foot is smaller than other foot...did ok thru my life,other than the limitations i had,no balance,no muscle strength in that leg,cannot bend or move my foot much because its stabilized from the triple arthrodesis surgery...i too walk on the outer edge of my foot...then about 12 years ago,i started getting these bone growths,they're like bone spurs to normal people only i dont get them where they get them,like the heel and toes...i get them on the bottom of my foot,and every time they file down a bone,it creates another area where one can develop...i've had three of them surgeries now,the last two only 3 years apart,so its becoming more frequent..the last one was just last year,and i've tried orthotic shoe inserts twice,and they cause other problems,so i dont wear them anymore...

there is no such PPS Specialist here in the Kansas City area anywhere at all,so if you've got such a Specialist there where you are,then i would see one,because with me,i'd have to go to New Jersey to that Post Polio Institute that Janet speaks of...but orthopedics,neurologists,physiatrists,
physical therapists are all a part of a group who deal with PPS...my physiatrist referred me to physical therapy,and i went in with apprehension on that,because i know my leg cant handle exercise,and that lasted three sessions,and we dont do my leg now,but are working on strengthening my hip instead now...and i only do that on my day off as its too much for me going after i worked all day...and this physical therapist is thinking he's working on my balance at the same time too,and that will never happen,because i've never had balance all my life...i cant even walk on grass or any uneven surface,and my foot turns on me constantly,which causes me to lose balance,and too my leg is shorter,so how on earth can you have any balance ya know...and janet is right,a lot of polio people are being diagnosed with ALS instead of PPS because of the similarities,but thats why they rule out everything first...makes it harder on those who were not actually diagnosed with Polio when they were young...i still have my old medical records from the military,but it only begins with the foot surgeries i had for the drop foot...and too, i never knew before now that there was a Paralytic and a Non-Paralytic,and i'm thinking because my leg isnt paralyzed that i had the Non-Paralytic,but when i started looking in my medical records,i saw i was diagnosed with Paralytic Polio...i think too you should get that book The Polio Paradox by Dr. Bruno,Janet told me about it and i bought it,and it is really good too,and might even explain a lot of things to you too,it did with me...he is also the one who got PPS put in to the Social Security Disability benefits,and when it comes time for me to get on disability,i am hoping i can go see him then,as i think he will be my best resource for getting disability without going thru lawyers...well this turned out to be a book,lol,so i will end here,and i hope everybody is doing well...cheryl

Last edited by tazkc1; 06-13-2008 at 02:10 AM.

 
Old 06-14-2008, 10:49 PM   #13
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Re: Post-Polio and reflexes - still strong or reduced?

Cheryl - I enjoyed reading your "book" and read every word of it carefully. My heart goes out to you with all the surgeries you have had to endure. You are very brave and seem very strong. I feel very lucky that I haven't had to deal with much as far as health issues all of my life, until two years ago (age 59) when all this began. All that I ever experienced was poor joint rotation in my left leg/hip....never being able to sit cross-legged like everyone else, and always being really clumsy at sports and dancing.

I ordered Dr. Bruno's books in hopes they will answer more questions that I have. I think the worst part of my fight with this are the darn muscle twitches. It really is hard not being able to walk very well, trying to be safe but sometimes still falling due to poor balance - Janet's message mentioned that she can't walk on uneven ground.....neither can I. It took me a while to buy my scooter, but I am happy that I have it now.....my two dogs are even happier because they can go out more now. Anyway, back to the muscle twitches......they never let me forget I am sick. I try and relax on my chair to read or watch TV, and my body is twitching everywhere. It gets worse after I walk a lot or do too much. Drives me nuts and is hard to cope. I started taking neurontin in hopes that it will help. I will give it two weeks and if it doesn't help I'll stop taking it...it makes me feel groggy in the mornings.

I am changing health insurance so I hope that I can find a PPS specialist. If not, at least I have found a good neurologist that offers alternative treatments. I saw him only once so far (had to pay $300 out of pocket because he is outside my health insurance), but will be able to see him often in July when my health ins. is switched. I believe that he thinks that I may have ALS too, and he said he would be very surprised if I had PPS, probably because I have strong reflexes still. Well, Janet's doc says that he knows of PPS patients with increased reflexes. Goes to show you that doctors don't know much. The twitches scare me because sometimes I think I have ALS too. PPS is no picnic, but at least it isn't fatal.

Keep writing and sharing. It is so good to talk to all of you.....you have lifted my spirits greatly. Take care and God Bless.

Carolyn

 
Old 06-15-2008, 02:03 AM   #14
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Re: Post-Polio and reflexes - still strong or reduced?

hi carolyn...i too am clumsy and knew i could never dance since i didnt have good balance...my foot is so super sensitive,that i could never go without a shoe on that foot,and my big toe was also fused during one of those surgeries as a kid,and drops just a little so its very easy for me to stub my toe on just bare floor,and even broke that toe once...i believe it was phyllis that mentioned having umpteen surgeries,and others,so really i've not had near the surgeries that some have had...if there are tests to diagnose ALS,and none have proved you have ALS yet,then why do they determine you have this?...its kinda like my neurologist telling me she dont think its so much as PPS,as it is the deformity and surgeries i've had,because my mind seems okay and no problems with my arms or good leg yet...and then too,says i will get worse and lose it there...and she mentioned the fatigue is probably due to not sleeping well at nites...i dont wake up tired though,and i go to bed early enough to allow for all the waking up in the nite too...they say when you get enough of the medication in your system,side affects usually go away,so if the Neurontin is making you drowsy right now,it may go away,but too,what one works for another,might not work for another...i also work in the cold,which can bring on PPS,and the neurologist didnt even put that together,and she also about expected something to be going on in my MRI that would suggest other than PPS,but my MRI came back fine,so we'll see what she says then when i see her in August...my Physiatrist has me diagnosed with PPS though...

i hope dr. bruno's book will help you carolyn... keep us informed on what you do find out...cheryl

Last edited by moderator2; 06-15-2008 at 06:09 AM. Reason: posted commercial website

 
Old 06-15-2008, 03:03 PM   #15
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Re: Post-Polio and reflexes - still strong or reduced?

Cheryl, Carolyn and all-

To all you men Happy Fathers Day!!! To Cheryl, we love reading your story- please keep on writing- sweetie!!! Carolyn- I surely hope you get the relief you need, it seems that the 2 tests you have had done would have showed if it were ALS. PPS is an exclusion of other illnesses/diseases- My reg. doctor would have sworn I had FMS/CFS before being diag.- but when I found out about PPS- I told her that is what I thought I had... It just all made sense. She was surprised when I came back from Dr. Bruno's and told her PPS...

Some PPS patients also can have FMS, CFS and even Parkinsons- but I don't think a person with PPS has ever had ALS along with it... Were you ever treated for Parkinsons- not wanting to scare you- I just think this doctors should get more their poop in a group before saying you have something when so far the tests you have do not show it... If they do not know enough or don't want to know PPS they should find you a doctor that can help you- not just write if off as ALS. Sorry, I just get very upset with this stuff.

I hope you are having a good day, try resting in between activities and even contact Dr. Bruno with questions- he is very good about getting back to people- He has done so much for Polio Survivors, we should be all very proud to have him and his wife..

God Bless & may y'all have sunshine in your day Janet

 
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