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Old 11-05-2006, 02:56 PM   #1
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Abbie323 HB User
New here with B12 Deficiency...Advice and Support Needed!

Hi All,

I really hope I am posting in the right place, but I am a 23 year old female who was recently diagnosed with a d12 deficiency. At the time of my initial blood test 5 months ago, my level was 78. It took 4 months, however, and 2 other doctors before one of them finally read my blood work and seemed alarmed. Two of the three doctors suggested I take a multi-vitamin for my low b12. The third doctor, the one that noticed the deficiency, just looked at me with his mouth gaping open and within 5 minutes, I had had my first shot and a prescription to administer 3 shots (on my own) each week.

Right now, we are in the process of figuring out what is causing the deficiency, but the truth is, I am pretty freaked out. I have no history of any health issues and really don't understand why this is happening and if I will ever be okay again. I have some pretty bothersome symptoms and pretty much feel depressed and too tired to do anything all the time.

Has anyone else suffered from a b12 deficiency here? I just would really love to get connected with other people that understand what I am going through. You would never think that a deficiency of one measly vitamin could cause so much grief, but it really does...and the sad thing is, nobody really understands. My parents think a lot of this is in my head and most of my friends and co-workers have never even heard of a b12 deficiency.

Please write back if you have any advice or stories to share. [removed] Thank you all for your time in advance. Also, please let me know if there is a better message board to post on.

THANKS! - Abbie

Last edited by mod-anon; 11-05-2006 at 08:20 PM. Reason: posted contact info

 
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Old 11-06-2006, 08:47 PM   #2
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dorvad HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

My B12 story is a long story, I had been having difficulty getting up from a seated position for a number of years, and then when I was driving my car my legs felt very heavy and numb, and then I also started getting pins and needles in in my legs feet and arms then my balance stated going funny, and I was very tired.
This would probably cover a period of about 7- 8 years before I was diagnosed.
My diagnosis came about after being admitted to hospital as an emergency.
I was lying in bed and I was not aware of my legs or the ability to move them, then I started having severe tremors down both legs.
In hospital they were unable to diagnose the cause of the problem until they ran some tests, they new it was a myleopathy but were unsure of its cause.
After exaustive testing Xrays , bloods, bone scans MRI etc.
The consultant neurogist asked me to do a couple of things
1. Feet together stand up and close my eyes, I fell over.
2. Sit on side of bed fold your arms across your body and get up I could not.
The blood tests showed I was severely deficient in B12 thus causing Subacute Combined Degeneration of the Spinal Cord.
I have to have injections every 2 weeks but the damaged done to the Spinal Cord cannot be put right.
So now I suffer from Spasticity, but the biggest problem is that I often take short term paralysys / paraparesis of my legs and as I said it can happen at any time and in any place, and because my muscles are aslo severely weakend getting up from a sitting situation is very difficult.
Saw my MD today and he is arranging for me to see another Neurologist who he reckons will be able to better explain what is happening to me and the likely outcomes, it would appear that my condition is something rarely seen in people and is the worse he has seen with my condition.
I try not to let it beat me, and I will do as long as I have the strength and the support of my loving wife, who is also my full time carer.
I am now no longer allowed to drive and that is a big deal.
Don’t let anyone tell you that being B12 deficient is no big deal it is big time.

 
Old 11-07-2006, 08:10 AM   #3
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Abbie323 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Dorvad,

I cannot even express how sorry I am for everything that has happened to you. It brings tears to my eyes just reading your story. I can only imagine how all of this has affected your life and I am just so sorry that you have had to deal with this.

It is so hard to imagine that a vitamin deficiency can do this to you. Because I had not heard about b12 or b12 deficiencies when I was diagnosed, I did a lot of research. I have a lot of faith that overtime, even your symptoms will get better. NEVER let a doctor's diagnosis totally dictate your recovery or how you feel day-to-day. I get the impression that the younger you are and the longer your body has to recover, the better and more complete the recovery process will be. If some doctors can't even recognize the deficiency then I don't see how others can fully tell you what to expect. It just seems like a crapshoot to me. I know I have no room to talk, but stay positive...it can't hurt you to will yourself to be strong and happy. I just can't believe it took that long to diagnose you. I would not have any faith left in doctors at all...that alone would make me feel like I could overcome the "sentence" they have given you.

While my symptoms have not been nearly as severe as yours, I have just experienced pretty much consistent

*nausea/no appetite
*brain fog/confusion
*dizziness/ weakness
*pain in arms, legs, feet, hands
*burning sensations throughout whole body, esp face
*burning tongue
*numbness in fingers and face
*physically and emotionally exhausted, but no ability to sleep
*pins and needles all over...feels like I’m getting stabbed sometimes
*bad joint pain
*stomach/chest/back pains
*blurred vision
*breathing trouble
*severe anxiety and depression
*I am either lethargic or overly emotional
*I have to force myself to clean my room or take a shower
*Muscle spasms
*Sore throats and sinus problems I was not accustomed to previously

It seems that regardless of the symptoms, this is an issue that is debilitating and it just makes me feel so better to talk to others that understand how this can take over your life.

I don't wish any of this on anyone, but it helps to know things like what to look for and what works to make the situation better. For instance, my doctor said that I would feel better immediately once I began receiving injections and 2 months later, I felt no different. I thought something was seriously wrong with me but fortunately other people with b12 said the recovery is long and slow...so this changed my outlook so that now I am more positive and hopeful than my Dr had left me feeling.

Thank you so much for responding to my post. It means a lot to me that you shared your story with me. I am almost always checking this board to see what new information I can find, so I am always here if you ever need to complain to someone or just need someone to listen. I wish the best for both of us overtime!

-Abbie

 
Old 01-26-2007, 10:26 AM   #4
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blachowski79 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Abbie,

I too was diagnosed with a B-12 deficiency earlier this year. I have been on B-12 injections for over 6 months now. First I was on them once a week, then I went to once a month. When re-tested, my levels were still extremely low so I have been bumped up to an injection every two weeks now. I have been on this treatment for several months now and I am due for another round of blood tests next month. However, I don't feel better at all! I still have severe fatigue and depression. I was wondering if you, or anyone else on this list, has advice on about how long I should wait before asking my doctor to look into other causes and/or treatments? I was also told that the injections would make me feel much better as soon as I started them, but unfortunately this has not held true at all. Any advice you could offer would be great.

Regards,
Kathy

 
Old 02-05-2007, 10:08 PM   #5
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Re: New here with B12 Deficiency...Advice and Support Needed!

I started with the weekly injections of B-12, and now I am on the monthly.
I can tell when I'm getting close to the injection date.....I start feeling tired, depressed, and my carpal tunnel starts acting up. I am just about due for another CBC. I have chronic anemia, so I was hoping the extra B-12 would help with that. I'm lucky, I feel pretty good most days.....but when a bad day hits, it comes on pretty strong. I hope they find the right treatment for you so you can get some good days too. Take care!
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Old 02-09-2007, 08:37 AM   #6
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Angela22F HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Abbie - I had all the same symptoms as you plus more. I have been getting injections for about a year now, and though I don't feel 100% I do feel much better. I don't think I'll ever get back to my pre-deficiency state, but I at least hope to come to a point where I feel somewhat normal. Just as an example to you, I will list symptoms I have experienced:

 Fatigue
 Muscle weakness
 Sore throat
 Hoarseness
 Tender and swollen lymph nodes in neck
 Shortness of breath/tightness in chest
 Asthma type illness complete with wheeze and allergen induced
 New allergies that I never had before
 Shakes/trembles
 Cough
 I’m either too cold, or too hot, never comfortable – 99% of the time I’m too cold though
 Increased thirst
 Chronic/Daily “tension” headaches – I think theres more to it than just tension!
 Muscle pain/twitching
 Joint pain/”migratory” arthritis
 TMJ
 Brain fog/confusion/cognitive issues (using wrong words, difficulty finding correct words, can’t complete simple caculations, stammering, frequently losing train of though, short term memory loss, etc.)
 Dizzy
 Tinnitus
 Light and Sound sensitivities
 Clumsy walk – always bumping into things
 Clumsy in general
 Inability to focus at what I’m looking at
 Excessive sleeping – when I can get to sleep – takes forever to fall asleep
 Disturbing nightmares
 Irritable - mood swings at the drop of a hat
 Food intolerances ( gluten, dairy, eggs)
 Frequently urinating
 Always thirsty
 Abdominal pain/tenderness
 Hair loss – good thing I have thick hair!
 Hair is coarse/breaks easy
 Lack of appetite
 Early fullness when eatting
 Weight loss
 Back pain (lower back)
 Shoulders/neck “burn”
 Simple cuts are not healing, but rather getting infected
 Severe PMS!
 Post Nasal Drip – EW! Really bad too
 GI Issues – blood, distended abdomen, nausea, etc.
 Numbness and tingling in extremities – hands and feet/shins (sp?) are always falling asleep
 Always feel like I have a flu or cold
 Constant earaches

From what the doctors and I have figured my problem is malabsorption, but after several exhaustive tests, I gave up trying to find the direct cause. I am feeling better with getting the B12 injections, so I gave up searching out the cause.

The one symptom that is still bothering me the most is the brain fog/cognitive issues - I still have difficulty in concentrating, stumbling on my words, keeping a straight train of thought and spacing out - but that too is not as bad as it was this time last year.

Anyway, my post has turned into a book. I just wanted to let you know that you are not alone and it does get better. I know all to well that feeling of loneliness because no one understands what you are going through. Even my fiance does not understand, but I found some wonderful people on this forum that helped me through it.
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Old 02-09-2007, 08:45 AM   #7
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Re: New here with B12 Deficiency...Advice and Support Needed!

Quote:
Originally Posted by blachowski79 View Post
Abbie,

I too was diagnosed with a B-12 deficiency earlier this year. I have been on B-12 injections for over 6 months now. First I was on them once a week, then I went to once a month. When re-tested, my levels were still extremely low so I have been bumped up to an injection every two weeks now. I have been on this treatment for several months now and I am due for another round of blood tests next month. However, I don't feel better at all! I still have severe fatigue and depression. I was wondering if you, or anyone else on this list, has advice on about how long I should wait before asking my doctor to look into other causes and/or treatments? I was also told that the injections would make me feel much better as soon as I started them, but unfortunately this has not held true at all. Any advice you could offer would be great.

Regards,
Kathy
Although I do not wish to hijack Abbie's post, I wanted to ask you what kind of B12 supplement are you receiving? After 6 months of treatments, your levels should be rising and you should be feeling better - I definitely would consult the doctor again.

The reason I asked what kind you were receiving is Cyanocobalamin is not readily used by the body. The liver converts this into Methylcobalamin, but not in therapeutically significant amounts. If you are receiving the Cyano- kind, then maybe the Methyl- would be of more use to you.

Also, what amount are you receiving in your injections? B12 has a low potential for toxicity, therefore a high dose should be ok. Your body will get rid of any excess anyway.

Also, though some people do not agree with this, a daily sublingual supplement (one you would place under your tongue and let it dissolve) is another way to supplement your B12. There are many people who swear by this and have gotten great results. Personally I have not tried it, but many on this forum have.

The only supplement not highly recommended is the OTC pills. Most of these contain very lil amounts of B12 - maybe 100mcg - meaning you would need to take 10 or more a day to equal what you would get in an injection. Also, the reason for the defiency is usually with absorption within the GI tract, therefore you still would not absorb enough B12 from these pills to even affect your deficiency status - it would be a very very minimal amount. In my opinion they are a complete waste of time and your money.
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Last edited by Angela22F; 02-09-2007 at 09:00 AM. Reason: spelling

 
Old 04-11-2007, 05:47 AM   #8
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Question Re: New here with B12 Deficiency...Advice and Support Needed!

Hi,

I started suffering frim blurred vision last December (2006) and this very quickly deteriorated so that by mid January I was unable to read or drive. Having gone through a whole range of tests on my eyes, which failed to find any problem, a blood test detected that I had very low B12 levels and I started on a high load dosage at the beginning of February. The only other problems I had were tingling and numbness in my legs and a very sore tongue.
After starting the B12 injections, my vision has continued to deteriorate and I am now registered as partially blind. I have lost most of my mid vision, although my peripheral vision remains unaffected.
The doctors and consultants who have treated me all say that they are optimistic that I should regain some if not all my visioin in a matter of months. However, I have seen no improvment yet and am feeling anxious and deptressed about this situation.
Has anyoone else been in a similar situation to mine and suffered vision loss due to B12 deficieny?

 
Old 04-17-2007, 09:22 AM   #9
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alisa0225 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Hi Linda and everyone else here on the Vit. B 12 board! I'm new here and just wanted to say Linda you are not alone. While my symptoms are not as extreme as yours with the vision, it has affected my vision slightly and they are extreme in other areas. I have a long list of symptoms, the main ones being: overwhelming fatigue; hair loss; mild loss of coordination; moderate loss of hearing, with a loud ringing in my ears constantly; mild memory loss and confusion, this is a real concern for me [removed]. To ensure accountability at work, I am anal and write down everything in lists to double and triple check my work! How long will this last? The doctors all said the injections will cure the deficiency immediately. This has not been true with myself.
I have done much research on the internet via medical schools and research manuals. I recently graduated with a dual Master's degree (July 06) and am feeling like I am useless and need to be 'put out to the pasture'. Gee, is depression one of the symptoms ) The worse feeling was, before finding the website; that no one knew how I felt!
I was recently diagnosed, just the end of Feb. and was started on 5 daily injections, then once a month. These injections have now been increased to once a week for a month, then every other week for life as I was not showing improvement. I have been to numerous specialists.
I am truly glad to have found this site. I just wish there was a way to chat in 'real time'.

Last edited by mod-anon; 04-17-2007 at 10:28 PM. Reason: peer sharing only

 
Old 04-18-2007, 12:56 AM   #10
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linda.wyn HB User
Smile Re: New here with B12 Deficiency...Advice and Support Needed!

HI Alisa
So sorry to hear about your problems - I'm not surprised they make you feel dpressed. I hope yourr employer is being supportive and recognises that this is just a temporary situation. Everything that I have read on the internet about cogniytive problems indicates that they are cured by B12.
Unlike your doctors, every consultant that has treated me has advised me that I will not get better quickly and that it will take three to four months before I can expect to see any improvement. I am trying my best to be patient, but it is difficult, especially as I don't know whether the damage done to my optic merves is irreparatible.
However, the neurologist that I recently saw told me that the B12 injections will only stop further deterioration and that I must do everything I can to help my body heal itself. This means eating sensibly and nutritiously, no alcohol and plenty of rest. For someone who has always been a bit hyper, underwieight for some time and suffered from an eating diorder, this will be a bit of a challenge. But I have been referred to a nutritionist who will, hopefully, advise me as to the best foods for healing the nervous system.
I have found over the past week that concentrating on my new healthy diet and lifestyle has made me feel more positive and calmer.
Hope to hear from you again

Linda

 
Old 04-18-2007, 12:31 PM   #11
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jackie133 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

To all,

I started getting severe muscle pain and spasm and fatigue and swollen lymphatics in my neck in Dec. 05. Doctors assumed virus. Four months later, slightly better (as I had started eating more red meat at this time) I was still having pain and fatique when I pushed myself. I had trouble digesting red meat for some time prior to that so wasn't eating much besides chicken, little did I know I just put myself in a catch 22 for getting b12 from my food.
Odd things started happening neurologically in June, pain in fingers, slight temporary pressures causing numbness in my shoulder for a month, very sore finger tips especially when flexing my neck forwards. Pain along the nerve spread up my arms then started in my feet. Extreme fatigue plagued me. End of September diagnosed low in B12 and got a shot but too little to late, it hit with a vengeance. Lancinating pain in fingers and toes and throbbing aching pain along every major nerve path in my body. Toenail beds went purple, feet were icy, difficulty finding words and starting sentences. Blood pressure kept dropping. Lymphatics swollen (never do a detox or cleanse while low in B12, effects are known to be more significant on the body...ow) Jaw spasms snapping teeth together while sleeping. Painless contractions of muscles, closing off of my throat to make me fell as though someone was squeezing my throat slightly. Burning feet, clumsiness, severe increased sense of vibration making driving excruciating. Severe anxiety and panicky feelings. Heart palpitations. Huge muscle twitches. No one could hug or touch me at all without pain, even the lightest touch burned. Hot temps (even others body temp.) hurt my hands and feet, cold hurt my feet. Severe startle response causing shooting pains and nerve noise (like static). On and on. Like a druggie I waited craving my next shot. I had 9 in one month.
Multiple Sclerosis was put forth to me, why do they have to scare you more? Fed up by the end of Dec. I went to see a naturopath and I must say he knows what he is doing. Improvements noticed very quickly though I still get pain on and off in my legs and they fatigue and can get achy still.
My neurologist said she has seen people worse off than me recover completely though she said she has seen it take years. She suspects that I will feel better by the fall.
It is extremely slow but hang in there, recognize the little improvements and rest, your body IS trying to heal.

Advice: In cases of pain try Craniosacral Therapy, calmed the nervous system for me, took the pain down several levels (I went 1x wk) and I felt so much better for it. It saved me, seriously.
Also know that people can have sig. symptoms if they are at the higher levels as well, everyone needs different levels within the range. I was 226 and know someone at 130 who only had a little bit of fatigue.
Good luck all.

Last edited by jackie133; 04-18-2007 at 12:35 PM.

 
Old 04-19-2007, 08:58 AM   #12
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alisa0225 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Hi Linda and Jackie,
It's hard to eat sensibly when you are nauseated and don't have the desire for food, isn't it? I've just been taking one day at a time and hoping I am doing the right thing. I am so glad that I found this forum and am able to 'talk' to others with this condition....though I would never wish this on anybody else <sigh>. It helps to have others that know what you are going through.
I finally found a neuropsychologist and am seeing him Monday to receive a slew of tests. This will hopefully give me a late baseline to later let me know if I am improving. I'm also hoping he will have some better knowledge on the treatment plan for the Vitamin B 12 deficiency than what I have been instructed/prescribed so far. It is so important to be your own patient advocate and not hesitate to speak up loudly if you don't believe they are providing the sufficient care. Trust me, the doctor doesn't want to hear you say that....but hey, aren't we the patient? And the doctor is the one providing the service. All I know is that I want answers and so far, they have all been very vague and unsure of themselves.

 
Old 04-20-2007, 05:05 AM   #13
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linda.wyn HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Hi
I know what you mean Alisa, I dont' have any appetite either and very little sense of taste - so I don't feel like eating.
I'm glad you have found a docotr who specialises in your condition and would be interested to hear what treatment, if any, he prescribes. As I live in the middle of nowhere in Wales, I have yet to see a doctor who has actually treated anyone with neurological problems caused by B12 deficiency.They all think I am a 'very interesting case' but have no idea what to do !
My vision shows no signs of improvement although I was tested last week and my peripheral vision is fine, which measn I can see to get around although I can't see any detail,. If you're wondering how I can see this, I have a special package on my computer for the visually impaired which magnifies everything really large, which is great.
I am seeing my consultant nest Wednesday, but he will probably just tell me I have to be patient!

Last edited by linda.wyn; 04-20-2007 at 05:09 AM.

 
Old 04-20-2007, 02:34 PM   #14
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jackie133 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Alisa,
Actually the only symptoms I didn't get was loss of appetite, weight and taste or the sore red tongue or visual issues. (I had about 20 other symptoms though.) Which is why they didn't think it was B12. In fact when I said the B12 shots helped a few doctors said, placebo. I figured at the time "then bring it on, cause it works", placebo or not. I did have one severe nausea and weight loss, anxiety episode about 1 year before the pain started where I lost 15 pounds in a month.

Just in the last couple weeks the pain has finally subsided significantly. I am actually feeling normal again for the first time in a very long time. It is awesome. I hope soon my legs will come around more, they are weak and sometimes my right foot doesn't pick up properly and I trip. They also get pain fairly easily but I keep postive. I must say though, not until my naturopath got me on his regime did I start to notice quick improvements. Part of the healing process set me back a bit until the body adjusted but like I said suddenly the pain is disappearing and I feel like me again. It's a waiting game definitely.

Gives you a whole new respect for people who have chronic pain or chronic fatigue, doesn't it though?
I hope everyone here heals in time. It is so scary to think you might remain where you are and yet you are so happy you are no longer where you were. I was lucky I had friends who never said they were tired of hearing about it , they just listened as I said how I was feeling each week or day or whatever, it was good just to be able to voice it outloud.

 
Old 04-21-2007, 11:10 AM   #15
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alisa0225 HB User
Re: New here with B12 Deficiency...Advice and Support Needed!

Linda,
I didn't find a specialist who specializes in Vit. B 12 deficiency, but am going to a neuropsychologist who will be testing me for the CNS neuro effects. This will give them a base-line reading and I will have a picture of whether of not I am getting better long-term wise.
I wish I could find a specialist who specializes in Vit. B 12 deficiencies. Does anyone know of one here on this site?

 
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