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Old 02-03-2007, 09:03 AM   #1
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Surprise, Surprise...Cord Compression!

I've posted before about my herniated C6-7 followed by subsequent neuro symptoms. I herniated 1.5 years ago (no surgery) within 6 months the neuro symptoms hit. In my NS defense, another MRI was ordered, but showed improvement of the disc - so he sent me off to a neurologist for further testing of what my problem might be. Anyway, for the last 10 months I have been dealing with the ongoing neuro issues, periodic gait distrubance (off balance), numb feet, intermittent tremors of arms & legs, twitching, hyper reflexes, the worst of the worst...that tuning fork feeling in arms and legs - like my nervous system will not shut off. I have been from Neurologist to Rheumatologist to Physiatrist - you name it (not to mention accupuncture, myofascial, osteopathic ect. - I just want to feel better - willing to try about anything). Went through EMG/NVC, brain MRI, spinal tap, blood work...the general testing mill - all "normal." The Physiatrist suggested one more MRI of my brain to put the "nail in the coffin" so to speak re: MS. I literally begged her to throw in another cervical MRI - her comment was the last one showed improvement so it's moving in the right direction, but to satisfy me it was ordered. So now...protrusion is larger with flattening of the ventral cord. I certainly wish this was not the case - yet could this possibly explain my ongoing symptoms and will someone finally believe me? I am going to look and look until I find a NS who does. I still have the fear that I'm going to get the "your neck is not doing this" line...then what is??? I've yet to get any answer to that question. My gut all along was this is about my neck. I appreciate this board as so many of you would explain symptoms that I totally have - which gave me confidence to push the docs. I'll keep you posted on what the game plan is going to be. Any advice is always appreciated. Thanks. Mona

 
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Old 02-04-2007, 04:56 PM   #2
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Re: Surprise, Surprise...Cord Compression!

Monarog, I am so glad to see your post! Believe me, I sympathize but I am going through such a similar ordeal that I have been waiting and hoping to see you here again.
Do I understand that your physiatrist wasn't persuaded that the cervical herniation is the cause despite the new MRI results? I don't get this at all.
I have a C5-6 herniation and I have had 2 fairly serious episodes of neck, arm and hand pain, weakness and some numbness. But I had to put all of that on the back burner to deal with a failed lumbar fusion. So, we decided to do epidural shots at C5-6 to buy me some time while I recovered from surgery in June. In Sept I began having new symtpoms: sudden onset of irregular heat beat, and vertigo. Also, my gait was all fouled up and I had a new strange weakness in my legs. The vertigo left but came back a month later and was much worse. With it was a new sensation in my head that I called my inner strobe - a sort of electrical shorting out when I'd turn my head. It all went a way but returned a month later and this time I was so sick I was vomiting. Oh, and I had severe spasms in my neck and arms. I was all fouled up.
And when my NS found abnormal Hoffman's Sign reflexes he sent me off to a neuro cuz he was sure my cervical herniation wasn't the explanation! And off I went to the neuro who sent me for a brain MRI and mentioned MS since she was also sure the cervical herniation was not the problem. I started to feel better and the scan came back clean so the neuro was baffled. Meanwhile, I'd found your post and read the stories of others with similar symptoms and some who had a cervical surgery that resolved all the neuro stuff just like that. So, I decided to run a little experiment of my own: I took a Rx dose of Motrin for a week (with NS approval). I figured if I was right and the herniation was the cause, the Motrin should alieviate my symtpoms. And it did! In 36 hours on 2400mg/day, almost all of my symtpoms were either gone (nausea, imbalance, inner strobe) or greatly reduced (leg pain and weakness, stiffness and pain in arms and hands). It was amazing. I felt like myself for the first time in months. And to do my little experiment right, I went off the Motriin after 7 days and all but the nausea came rushing right back in- by 72 hours I was miserable again.
My little test only shows that inflammation is present. I saw the neuro during my test and she was unmoved (still refused to think the herniation was at issue) but took the result as proof that blood work was needed to investigate the inflammation. I don't have the results as yet.
I have some hope of persuading my NS. He actually works with me and not just on me. I don't know if I will be able to keep taking this dose of Motrin. I know it can be rough on the stomach. But I will fight to keep it. I feel pretty dang good thanks to it.
Have you ever taken Motrin or any NSAID during this 'neuro symptom' time? I couldn't have taken it for the first 6 months post op. I also haven't tried a lower dose yet. I'm just enjoying being relatively symptom free for a few weeks. I see my NS on Tuesday.
Your post has been so good for my well-being. I was so discouraged with the medical roller-coaster. I was sure the answer to my problems was the one staring us in the face - a significant herniation with cord compression. I don't feel the need to look any further. Can't understand why these medical people don't want to accept the obvious. Thanks - Suzy-Q

 
Old 02-04-2007, 06:15 PM   #3
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Re: Surprise, Surprise...Cord Compression!

Suzy Q....my heart goes out to you. I'm sorry you too are dealing with all of this. I have yet to discuss my results with the Physiatrist...so I don't yet know her take on things. I went and picked up my MRI as I was ready to hop on a plane to get figured out as I am so sick of being messed up with no answers. Well, the Radiologist report was in with the CD of my MRI. Once I saw the words "flattening of the ventral cord," and "protrusion is now larger extending beyond the disc." I decided to hold off on the plane ride and consult with my NS, Physiatrist etc. Like I said, my last MRI 10 months ago indicated improvement. I was in so much pain, dizzy/vertigo (like you), numbness, periodic weird gait (off balance), and as I said this terrible oversensitive nervous system 24/7 etc. etc. that I just couldn't believe things were improving. What to do? So...I have been through the "I' think I have an awful disease" scare since everyone said my neck was "fine - getting better." In the mean time... these crazy symptoms have always felt generated from my neck...I'm no doctor and all the "experts" are telling me no way - so I would begin to doubt myself. Like I said...I haven't got my NS take on things yet - and I fear he is going to say, "it's not bad and not causing your symptoms." But it didn't take a rocket scientist to read the report that things are definitely worse and not better - I just don't know what he is going to think. I have taken Motrin and some NSAID's during all of this, but not the dosage you've tried. The only improvement I've experienced is a bit of neck/arm pain reduction, but it hasn't touched the ***arre neuro stuff. I know MRI's are the great golden standard, but I also think it takes the focus away from our REAL symptoms when the image looks "good." Anyway, keep me posted on how things go for you. I will let you know once I meet with my NS to get his thoughts on things. I really like my NS, but if he blows me off I am going to get more opinions. I, by no means, want to rush into any surgery. If there are other options I am all ears. I just want to feel better, as I'm sure you can relate. Take Care. Mona

 
Old 02-05-2007, 05:23 PM   #4
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Re: Surprise, Surprise...Cord Compression!

Hello Mona,
I'm just finishing getting all my stuff in order for my NS appointment in Boston tomorrow. It is a long trip for me so I try to get every ounce of 'umf' out of each visit. I am hopeful of convincing this doc to take my theory seriously. So long as my blood work is clear (still no word on that), there are no other explanations for my symptoms. And no one knows better than this surgeon just how inadequate an MRI can be. He did the revision surgery to my failed fusion. Several MRIs, xrays, and a ct scan all showed my titanium hardware at L4-5 to be in place and secure. Well, this doc spent 4 hours removing the scar tissue around my nerves and the tangled up mess of that hardware because it was in motion and unsecure! I agree with you, some of the docs I've been to act as though no MRI has ever been wrong or misleading.
I also agree that a cervical surgery is nothing to jump into. I am in no mood for any surgery. Heck, I'm against even having my teeth cleaned at this point! But knowing that my cervical herniation was the casue of these symtpoms would allow me to relax and to stop searching for an explanation. I've had this herniation for a year so I am not so hopeful that it is going to heal. But I am content to hit it with epidurals to get past the acute phase and to manage it with Motrin and PT as long as possible and hopefully for a few years. I can't take any more time from work for a year no matter what so it is really a mute point. I am fusing in my lower back (thank goodness) and I may yet live to think having surgery was the right decision. BUT I have been in bad shape for 3 years and the 2 surgeries were brutal. I could not recommend such a surgery. Yet. A co-worker had a cervical fusion C4-6 about 7 years ago. She syas she had to do it but that she is still dealing with constant pain and debility. No, I am in no hurry for surgery.
My NS (a great guy) takes a pretty conservative view of this cervical herniation of mine. Until I have ongoing arm and hand numbness and weakness (dropping things), he won't push me to have the surgery. Of course, that opinion may change if he agrees that this herniation is also making me pretty dang sick.
Just wondering - do you have hip or leg pain? I was having loads of both and spells of intense leg pain that rivaled anything my lower back ever did to me. Take good care - Suzy-Q

 
Old 02-06-2007, 09:02 AM   #5
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Re: Surprise, Surprise...Cord Compression!

Hi Suzy Q,

How did the NS appt. go? Please let me know how it went. No, I do not have pain per se in my legs or hips. I get alot of numbness in both of my feet, the bottoms of both feet are really sensitive, like they feel everything on the ground much more than they used to, if that makes sense. The periodic off balance, weird walking is also a bummer. For me, I am sick and tired of neck/arm pain, my herniation was Sept. '05. But for me, the very, very worst symptom is my hypersensitive nervous system, my startle reflex is just over the top, I feel jittery inside ALL THE TIME, some hours/days worse than others, but it's always a constant to some degree. My reflexes are very brisk when checked. I was an avid runner until all this hit...I always have had very low BP, once the neuro symptoms hit I now have high BP, always elevated - this was a very sudden onset so I don't think it's just an "old age" developing thing - I am 45. I was bummed as yesterday I missed a call from my NS, he said he wanted to discuss my MRI and that I should see him - so I am hopeful he doesn't think this is all in my head. I am bummed as I couldn't get an appt. to see him until March 6...I did request that he call again to at least discuss my MRI with me so I can get his opinion vs. waiting an entire month to find out. He's, of course, a very busy guy so don't know if I'll hear back from him. Your lumbar issue sounds terrible, I am happy to hear it seems the fusion is setting and things are looking up there. I'm like you, I want to avoid surgery if possible, but I have been so sick for the last 1.5 years, that I am open to about anything if a doc thinks it will get me on the mend. Keep me posted how things are going; I'll do the same. Take Care. Mona

 
Old 02-07-2007, 03:41 PM   #6
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Re: Surprise, Surprise...Cord Compression!

Hello Mona,
Well, I had my appt in Boston. It was a long day. And I am not unhappy thoughy I wasn't able to convince my NS that the herniation is the root of my problem. And the bloodwork was fine (ANA-, SED Rate normal and so on).It just doesn't add up for him. OK. I have a deal of respect for this guy so I accept that this as his professional opinion. He is uneasy about the Motrin dosage and won't Rx it for me. He understands that I am going to keep taking it anyway. I will try to reduce the dosage to what I need to remain symptom free but I won't stop taking it. I'm not a fool. Even if these docs can't come up with a diagnosis, I will do my best to feel and function better. He referred me back to my GP and thought I might be able to try taking Celebrex. But he also told me he would be referring me to a rheumy in May if my symtpoms persist when I stop taking the Motrin. I'd say he feels I may have arthritis and I have to agree that the hip and leg pain are suspicious for that. But vertigo? Intense nausea? Imbalance? Inability to drive?
But since I am taking the Motrin and I feel sooooooo much better. I am loathe to keep pushing for more medical tests. I am going to work and catch up and hope it just resolves. I can't think what else to do or to ask for. And I am weary of it all.
I will go back in May t0o Boston and if I am still symptomatic I'll have scans galore. A bone scan as well as the others. And that's it.
I gave it my best shot but I have 2 opinions in a row that say NO. What do you think? Suzy-Q

 
Old 02-08-2007, 07:02 AM   #7
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Re: Surprise, Surprise...Cord Compression!

Suzy,just an FYI here.if you need the motrin but have stomach concerns about it,there is a med out there called cytotec? this med was made just for people who have to be on any NSAIDS to try and prevent the usual stomach issues.i was put on cytotec many years ago by my neurologist when i HAD to take motrin but my stomach would just burn like hell everytime i took it.it was an amazing difference in my stomach once i started using the cyto along with every dose of motrin.just something you may want to discuss with any doc.your primary can Rx it for you too.it made a huge difference for me.this does not interfere with the absorbtion of the motrin at all since this is what it was actually made for,unlike some of the other anti ulcer type meds that can cause absorbtion problems.just a suggestion for you if the motrin really is working that well for you.good luck,with everything,marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-08-2007, 09:38 AM   #8
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Re: Surprise, Surprise...Cord Compression!

Hi Suzy,
I don't know what to think! So many of us share so many similar symptoms, with this common thread of cervical problems. Yet, the "experts" often refute that the symptoms are from the neck, though often can't diagnose what is causing the symptoms - and all of the ususal bloodwork and testing comes out "normal." I understand that each of our cases are unique, but this seems to be such a common situation, doesn't it? I fear that I am going to get the same input as you have - as I have for so long now...I was getting hopeful that my recent MRI from last week, showing worsening with the disc, might change things, but I'm beginning to lose confidence. I do like my NS here, but March 6 seems like forever - especially when I get hit with a really bad day, like yesterday. So I just made an appt. for March 13 with another NS I saw at the beginning of all of this; I will want to consult with 2 or 3 anyway - so I'll get his opinion on things. He's just down in Seattle only 1.5 hours down the freeway. When all my neuro symptoms hit last spring and my MRI then looked like things were better...my NS here said no surgery, non operable. But what I do like about my NS here is he was about the only doc who, after all of my clean testing, said that my disc probably was the cause of my nervous system going south. He admitted he couldn't medically explain it all, but that he did get the odd case like mine. However, he didn't provide me a way to get better. He was the one who suggested accupuncture, myofascial etc. So, I will be interested what he thinks now that the recent MRI shows things as worse. Anyway, I'll post once I see this first NS next week and let you know his take on things. I hope you can keep your symptoms under control with the meds. Unfortunately, that just hasn't been my case. Good luck Suzy. Mona

 
Old 02-08-2007, 04:05 PM   #9
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Re: Surprise, Surprise...Cord Compression!

Hi Marcia, Hi Mona,
Thanks so much, Marcia, for the tip on the cytotc. That's new info for me and very helpful. I haven't had a single problem with the Motrin at all (my NS was shocked-he can't take even 800 mg without pain) so far. But I will talk to my GP about it. It is like a miracle so far as how much better I feel taking just the Motrin.
I sure hope, Mona, that you find some help soon. I was just miserable and the funny electric head sensation was about as disorienting as anything I have ever been through. I feel for you in having so much going on and so much still to do. Of course, I need to remember that I am but a few weeks away from my own ordeal and I should not be forgetting it. Reading your last post made me wonder if you had Evoked Potentials testing? And is your 'startle' reflex stuff at all motion sensitive? That made me wonder if the EP testing would show some abnormality in transmission of nerve impulses. Just a thought. I'm willing to bet you've looked this over pretty well already. Well, I'm going to check in with my old friends on the back board. I've neglected them terribly during the past few months. Take good care - Suzy-Q

 
Old 02-12-2007, 09:29 AM   #10
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Re: Surprise, Surprise...Cord Compression!

hello everyone,

I am having a similar experience as yours. My nervous siystme is so fouled up. I have nerve sensations going on all of the time throughout my body. It is not really painful, just annoying. However since it just started happening 2 months ago the sensations are getting stronger and I am scared they will become more painful. I had a foramanectamy in Jan of 06 and was fine for a year. I just started taking Lyrica and I hope that helps some. I have not yet seen a Neuro for my latest symptoms, but as reading your posts I am not very hopeful. I get very discouraged and angry at times. I just want to sleep all of the time because that is when it all goes away. I am afraid I will get to the point where I cannot take this anymore.

 
Old 02-12-2007, 11:57 AM   #11
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Re: Surprise, Surprise...Cord Compression!

Hi Cmatthews,

Yeah...it is frustrating and scary. Your input is scary for me as I have not had surgery yet and get hopeful that it might provide me some relief...yet you've had a surgery and sounds like things aren't going too great. It seems the nervous system is just so complex and there are so many things they just don't know. I think a person's system can respond differently to various traumas and shocks to their nervous system - just my opinion. You used my exact words...my nervous system is very "fouled up" as well. Try not to lose hope and continue to push docs for help and answers. Believe me, I know it's hard sometimes. When I'm really sick I have told my husband before that I'm not sure how long I can take it - some days are definitely worse than others. Take care and keep us posted on your progress.

 
Old 02-12-2007, 04:59 PM   #12
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Re: Surprise, Surprise...Cord Compression!

Monarog,

Well today I went in for an EMG to see if there is any nerve damage. Well what do you know, it came back normal. So the doctor does not think it is my back. I am relieved to know that it is not my back, but what is it? I guess some of it could be psycosematic. He did give me some Lyrica to try. hopefully that will make it better. Right now it is not so much about pain as it is annoyance. I feel like I am a POW going through chinese water tourture.

 
Old 02-12-2007, 07:14 PM   #13
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Re: Surprise, Surprise...Cord Compression!

Hey Cmatthews...

I'm glad to hear your EMG came out okay. I had one as well and it was "normal" also. I don't know what to think! I'm sure the whole psychosomatic can certainly play a big role; I'm sure it has for me. However, I know something is just not working right physcially as well...high blood pressure out of nowhere, along with a laundry list of neuro symptoms that I just couldn't even dream up if I tried tell me I have a very real, physical problem - I can feel it, every day, every hour. Let me know if you get some relief from the RX. Keep us all posted, I'll do the same. Take Care.

 
Old 02-13-2007, 10:55 AM   #14
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Re: Surprise, Surprise...Cord Compression!

Quote:
Originally Posted by monarog View Post
Hey Cmatthews...

I'm glad to hear your EMG came out okay. I had one as well and it was "normal" also. I don't know what to think! I'm sure the whole psychosomatic can certainly play a big role; I'm sure it has for me. However, I know something is just not working right physcially as well...high blood pressure out of nowhere, along with a laundry list of neuro symptoms that I just couldn't even dream up if I tried tell me I have a very real, physical problem - I can feel it, every day, every hour. Let me know if you get some relief from the RX. Keep us all posted, I'll do the same. Take Care.

 
Old 02-13-2007, 11:21 AM   #15
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Re: Surprise, Surprise...Cord Compression!

mona/susie q,
i too have been hit with a host of non specific neurological symptoms and still undiagnosed. i've seen both of you post and thought, oh my gosh, it almost sounds like me. of course our symptoms are probably a bit different but on the same path.

i've been so mislead by looking into so many different possibilities, i could scream or live life in infinite fear.

my symptoms started in july of 2006, started with eye twiching, vision issues, my neck started cracking and vertigo. i also felt like i was walking funny. weird to describe but kind of like i was walking in a "C", part of my body leaning to one side. i didn't really think to much of it at the time....pathetic but true. late july i had an episode where my right side just felt like it went "dead", ended up in e.r. for cat scan and tests. (went to opthamologist for eye exam, perfect vision)

md said, no stroke, no tia, heart studies/labs fine. probably a pinched nerve. he put me on zithromax for possible sinus problem. five days later at night, i had an episode where my body was vibrating, burning sensation up spine, myoclonic jerking, tingling sensations and weakness. next day, back at e.r., labs fine, sed rate. 2. so i went to a neurologist.

mri of head and c-spine w/wo contrast, fine, neurological exam, fine, thyroid, syphllis (can't believ that test), b12, folate, lyme fine. off to ENT for an ENG for vertigo, fine. went for mamogram since neuro said when i told her of arm weakness, have you had a mammogram? no, but went, fine. went to ortho for leg weakness, no mri, but xrays of pelvis/knees, fine.......off to pt. ortho says sciatica with gait disturbance. HUH??????????????????

okay so i'm doing pt, no vision problems since the summer, vertigo or lightheadedness still present. always one sided. i now get shooting nerve pain throughout my body, lasts a second, goes away, some numbness on right hand, pinky/ring and half of palm with elbow pain. walking still feels weird, still walking like a C. no answers. neuro said 30% of neuropathy's go undiagnosed, post viral, etc. picked up results of mri, nothing, nothing, nothing, everything normal.

so here i sit, googling away, pursued lyme since i lived in new england but negative and not going that route with a negative test. thyroid normal. sed rate normal. so i've ruled out some things. i'm not sure if i have three different things going on or one. i kind of think i herniated a disc in t spine, as i'm of short statue, a nurse who lifts some very heavy people., who knows, my symptoms are transient, non specific. i mean how do you tell doctors you feel lightheaded on one side of your head?

i go back to my gp at the end of february and hope to get a mri of rest of spine, neuro said come back and they can do lumbar puncture, scared, not ready for that.

weird thing about my symptoms other than most being on my right side, my right sided weakness starts at knee and goes down, same with arm, starts at elbow and goes down. i don't know enough about dermatomes but wouldn't it continue along the nerve path if is was nerve compression? if it was spinal compression, wouldn't it be constant? no bowel/urinary problems. just very strange.

right now i'm looking into mercury poisioning and possibly gluten allergy. sad huh? i know it's not lyme, als, ms or arthritis, i know my cspine is fine as is my brain. but what?

you knwo the saddest thing, if my neuro told me i had ms i would probably hug her to have a diagnosis.

good luck to you both
karen

 
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