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Old 02-11-2010, 05:31 PM   #1
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Just diagnosed with MS.....dazed and confused

After about a year of some odd goings on with my body after 37 years of being a healthy person, I was just diagnosed with MS on Monday. It has been a long road and while I am relieved to finally have a diagnosis, I am terrified of what the future holds. I have done my homework, talked to people and understand that I can live a normal healthy life. I just want to live it without MS please and I most definately do NOT want to give myself injections. I realize that neither of those are realistic, so here I sit, looking for some support and help trying to figure out where to go from here.

My story is this. Last December I had a bad case of vertigo (BPPV). I was treated and the spinning stopped, but I had other symptoms that were not going away. I had an MRI done and spent a lot of time at the Yale Balance Center being tested. I was diagnosed with having a bilateral vestibular loss (or, for those who don't know, a total loss of my inner ear function). The doctors had no explanation for why this happened to me so suddenly. I was fine one week and the next, wham, no function. Or at least as far as I could tell.

There was some discussion about it possibly being MS, but I had one very minor "spot" on my brain scan and no other real symptoms that brought them to a diagnosis.

Fast forward to this past Thanksgiving when I began to have numbness and tingling in my left arm. I saw my GP who thought perhaps with my balance problems, I had changed the way I was walking and gotten my spine out of alignment and suggested a chiropractor might be able to adjust me. I saw the chiropractor for a while who was greatly helpful in treating TMJ (that I didn't know I had) which reduced some of the imbalance issues, but the numbness continued.

I also began getting the electrical "zaps" in my lower back when I bent my neck forward which then started in my ankle.

My GP referred me to an orthopedic doctor who decided that it was an issue with my neck or a pinched nerve. My neck x-rays showed normal spacing in my discs so they ordered an MRI of my neck and an EMG test.

I had the EMG test done last Monday which showed no abnormal nerve problems, everything seemed fine. The neurologist thought it might be carpal tunnel but did the MRI as a precaution since they had the machine in their office. After the MRI, the neuro wants to see me and tells me that I have transverse mylesis (inflammed spinal cord) and wanted to do a brain MRI and lumbar puncture the next day. I had both of those tests done last Tuesday.

The neuro reviewed the brain MRI after the LP and said that there were some changes in the scan from the one done previously and he wanted to have the radiologist review the results before making any statements and that I should call his office on Friday for results.

So I call on Friday and when the nurse returns my call, I was told that the results from the LP weren't in yet and to call later this week. I said I was calling about my MRI, the nurse says let me read the notes..."okay, there are a handful of spots on your brain but nothing to worry about". I questioned this statement and asked how the handful of spots in combination with the spine MRI and my other symptoms would affect that statement. I further asked if the lab work from the LP wasn't back, how could they tell me not to worry about it, come back in 6 months. If I didn't need the LP to rule out MS, why did I go through it. This nurse wasn't the one assigned to my file, apparently she was too busy to take time to return my call so she was asked about my question. She gets on the phone and says "its not MS, don't worry".

Well, as you can imagine, having done my homework I knew that I had reason to worry and insisted that I speak with my doctor. Come Monday morning, I was asked to come into the office to meet with the doctor that did the LP as well as their "MS specialist" at which time they informed me that the markers were in the spinal fluid for MS and that along with all my other symptoms would lead them to diagnose me as having MS. The MS doctor did say that most people who have a loss of balance have it due to an issue with their spinal column, but mine seems to be with vestibular nerve which he said was a rare and unusual symptom, but did equate it to the MS.

I spent a great deal of time telling them both how unhappy I was with the way their office communicated with me and all the aggravation I had been through (there was more, but I'll spare you of all the drama). Both doctors apologized profusely and seemed genuinely apologetic.

I have had steroids by IV the last 3 days to reduce the inflammation and have to decide which course of treatment I want to use.

As much as I knew this was what was wrong with me, I am now terrified about my future. I am scared to do injections. I am scared as to how this will affect my job (I manage a 200+ person law firm), my role as a mother, wife, community volunteer, etc. I know you will all say I can still do all of these things and I'm sure you are right, I just haven't fully accepted it. I want to climb under a rock and make it go away.

How did you all deal with the diagnosis and moving forward with your life? Did your doctor suggest one particular treatment over another? Mine gave me a few to chose from and I just don't know what to do.

HELP!

 
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Old 02-11-2010, 09:14 PM   #2
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Re: Just diagnosed with MS.....dazed and confused

Welcome. Many feel dazed on first notice, but eventually you will realize that the only thing that has changed about you is that you now know why you are having the symptoms.

I have spent 32 years with MS and have been med-free. That was the choice I made. I am glad because studies show bone loss for certain med and with steroid treatments. You might want to get a bone density test run. My first neurologist in 1982 told me to stay away from the steroids. I am thankful to him for that advice. If you watch your diet and make some lifestyle adjustments, you can live a blessed life.

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Old 02-12-2010, 05:13 AM   #3
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Re: Just diagnosed with MS.....dazed and confused

HI there. wow, youre story sounds so much like mine when I was dx! I was 38 years old at the time, had just gotten married, inherited 3 step kids, was doing my BS in college and had bought my first home. I was completely overwhelmed!

Its terribly frightening not knowing what the future is going to bring. I know you have read some of my other posts (from your other posts) and I want you to know, you really will survive this.

I went on to finish not only my bachelors, but also my MBA. Im doing my doctorate now. I have a high powered job, I travel with my job, I have a whole dept under me- and at times I feel like throwing it all away and saying to Heck with it...but I dont. I tried taking a few months off, even changed jobs at one time and went into administrative work, thinking the 9-5 sitting at a desk would help....I hated every second of it and went back to sales.

Your doctor not choosing your med is common. And, actually its the right thing to do. You should be well studied on the different meds and make your own decision. I started on Copaxone, hated it and almost died from it, severe allergic reaction and switched to Rebif where Im very happy. Rebif has the smallest of all the needles, you only do it 3 times a week- and its easy. It has an autoinjector for those hard to reach places, and also for people like you, who are squeamish about the whole thing. You load it and push the button and boom- its done! Just so you know, Avonex and Rebif are the exact same drug. Rebif was introduced a year after Avonex, because many of the users said that they felt that "need my fix" feeling....after day 5 or so, the drug levels in their blood stream decreased substantially, thus giving them that horrrible feeling. Also, because you only do it once a week, and becaue your blood levels are constantly going up and down, it is MUCH harder to get used to then Rebif is. Rebif keeps your blood levels steady, and allows your system to get used to it faster- thus the side effects are much more tolerable and you get used to them faster.

The electrical feeling in your neck when you bent your head down is called the MS hug. You can read about it...its not uncommon and will come and go thruout your MS experience. I havent had it in years, but I remember the pain and instant shock feeling!

I think the hardest thing to adjust to with having MS is that NOT everything is related to MS. You get a sore throat, you think its MS. You pull a muscle working out, you think its MS. You are tired you automatically think its MS related. Not everything is....although, many of your balance issues and what you thoguth was inner ear, MIGHT have been. Thats a common thing with MS. I also woke up to a numb hand and fingers at one point- that was the start of my MS dx, and thought it was Carpal Tunnel, then thought it was a pinched nerve. Now I know its MS. It never went away. almost 5 years later, I still have the numbness and pain. You get used to it!

Right now, you are very overwhelmed. And, the first thing you should be thinking about is what drug you want to start. Statisticaly, people who take one of the 4 drugs have much less progression then if they do not. Chances are, if you take one of the drugs, you will NOT progress into one of the more worrisome levels of MS. Relapsing Remitting MS is manageable! I promise.

You can do everything you did before you found out....you will travel, enjoy your family- and the more you work and exercise, the more normal you will feel. Dont give up anything! I am living proof that life goes on and we can actually improve ourselves.. I spend so much time "exercising" my brain, determined not to let this affect me, that Im into a doctorate (PhD) degree. I work out every morning for 1/2 hour just to keep my flexibility and body in shape. Next month, Im doing a bikini vacation in St Lucia!! And, I deserve it. I work hard- and take care of everyone both professionally and personally in my world.

One step at a time. Deal with this one step at a time. You will have many stages ahead of you to deal with...but one year from now, youll be strong. I promise.

Let us know how we can help.
Hugs
Nikki
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Old 02-12-2010, 12:48 PM   #4
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Re: Just diagnosed with MS.....dazed and confused

I am just offering some big hugs from the inner ear message board.
I don't have any good advice. I'm just a gal with bilateral vestibular loss.
I just have been following your story on the inner ear board and I am thinking
of you. Take care.

 
Old 02-13-2010, 06:43 AM   #5
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Re: Just diagnosed with MS.....dazed and confused

Alborde - thanks for the nice thoughts, this wasn't the path I expected but I guess no one knows what the future holds. It IS a huge relief to understand the reason for my BVL. Its a much better answer then my doctor telling me "we'll figure it out in your autopsy".

Nikki - I have read some of your other posts and you have already helped me before even communicating directly with me. Its a very confusing stage in my life, but I understand that I WILL get through this. I am in that stage of trying to decide if I should scale back on the position that I have at work, but based on what you are saying and my indecisiveness, I'm not going to make any "career suicide" decisions right now. My biggest objective right now is to find ways to keep my stress level down, easier said then done.

I think I am leaning towards Rebif. It seems to be the lesser of the other evils. Does it leave the permanent dimpling in your injection sites like with Copaxone? I don't want to decide based on vanity, but I don't want to go around all dented up either. I may just have a bikini vacation in my future too!!!

I'm impressed at what you have been able to accomplish during your bouts with the disease. There are days when I can't make my mind focus and concentrating and making decisions seems like the hardest thing in the world to do.

While I hadn't heard the term "MS hug", I had read that it was a symptom of MS and it was, for me, the last straw. When the doctors were trying to dismiss me, I knew that it couldn't be nothing. My orthopedic doctor went so far as to say that there aren't any nerves that run from your neck down to your spinal cord by your tailbone so it must be muscular. Ah, hello???? I didn't go to medical school and even I knew it wasn't muscular. All I needed him for was to get me to the MRI and the rest was history....

The neurologist that specializes in MS does now say that my vestibular loss is related to the MS, said that was probably the first nerve to go.

Thank you for your positive vibes, I truly need it right now. I seem to be okay until I start researching treatments and then reality sets in. I haven't told my 9 year old yet, I'm not sure that it will affect her. She of course will have questions when I start doing the injections so its only a matter of time, but for now, I don't want to scare her so I'm just not saying anything.

 
Old 02-13-2010, 07:56 AM   #6
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Re: Just diagnosed with MS.....dazed and confused

Wilc, I responded alot to you in another post of yours, so I wont repeat myself but Ill answer your additional questions.

No, the Rebif does not leave permenant dimpling in your skin. You do occasionally get the bullseye circle which developes the day after you inject. It fades by the time you get to your next shot. Youre constantly rotating injection sites, so the bullseye moves...but its manageable. I use something called Arnica gel. Research it. Its available in every healthfood store and grocery store, comes in a tube, and is about 6$ a tube. I go thru a tube every 4 months or so. I use it to massage the area immediately after I inject. Originally used by AMerican Indians for brusing and redness, it takes much of the bullsyes away and prevents it from showing up. I also use it after I shower on the areas which I inject...

As for your kids. I have 3 stepchildren who live with me 80% of the time. I didnt tell them right away either...but when I did, the National MS Society has some great literature which you can ******** which talks about how to talk to kids about MS....it helped me alot. Also, you remember that doing these shots PREVENTS you from getting sick....and its important that you do them to stay healthy for them. Tell them that, and theyll understand.

I also agree the eye issues/ balance issues was your first symtom. Unfortunatley, you had a stupid doc who didnt put two and two together fast enough...however, sounds like you are in good hands now. Stick with the MS specialist for now....down the road, if you are stable, you might not need to see him, but keep seeing him for the next 18 months or so, every 6 months minimum so he can monitor you. With Rebif, youll need to get blood work done every 5 months for the first 18 months...in many cases you get liver enzymes spike. Its not uncommon and happens to almost all of us the first 6 months - but in the next few months, they almost always return to normal. Its part of the body adjusting to the medicine.....

As for being impressed with me. Dont be. I look at life as a choice. We can fall into depression and take ourselves out of the game, or we can live our lives normally- and show the world that we control our MS, it doesnt control us. Trust me, looking at it my way, keeps me going. I refuse to feel sorry for myself (my day job I work with Hospice patients, so I see ALOT worse then MS), and I refuse to believe that I have to give in to this disease...I push and push, sometimes too hard- but I live in a fast paced area, and the most expensive part of the country (half way between NYC and Phila) and in order to maintain our home, it takes two incomes. I love school and love working and getting a paycheck- so I cant let MS take me out of the game. It wont. Its 99% mind over matter, with the help of eating right, working out and not allowing pity parties to a part of my life.

Youre going to be okay...im glad my "other' words have helped you. I promise to help you directly as well. We'll get thru this together.
Hugs,
Nikki
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Old 02-14-2010, 06:13 AM   #7
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Re: Just diagnosed with MS.....dazed and confused

Quote:
Originally Posted by MSNik View Post
As for being impressed with me. Dont be. I look at life as a choice. We can fall into depression and take ourselves out of the game, or we can live our lives normally- and show the world that we control our MS, it doesnt control us. Trust me, looking at it my way, keeps me going. I refuse to feel sorry for myself (my day job I work with Hospice patients, so I see ALOT worse then MS), and I refuse to believe that I have to give in to this disease...I push and push, sometimes too hard- but I live in a fast paced area, and the most expensive part of the country (half way between NYC and Phila) and in order to maintain our home, it takes two incomes. I love school and love working and getting a paycheck- so I cant let MS take me out of the game. It wont. Its 99% mind over matter, with the help of eating right, working out and not allowing pity parties to a part of my life.

Youre going to be okay...im glad my "other' words have helped you. I promise to help you directly as well. We'll get thru this together.
Hugs,
Nikki
Nikki,

This is just the type of stuff that I need to hear! Thank you again. I know in my heart that I will be okay and I will beat this. I appreciate all of your advice and knowledge. its very helpful.

 
Old 02-14-2010, 06:47 AM   #8
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Re: Just diagnosed with MS.....dazed and confused



Meant every word!! You will get thru this and We will help you! We have all been where you are....and guess what? Every single one of us survived!

Nikki
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Old 02-14-2010, 01:39 PM   #9
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Re: Just diagnosed with MS.....dazed and confused

Quote:
Originally Posted by MSNik View Post


Meant every word!! You will get thru this and We will help you! We have all been where you are....and guess what? Every single one of us survived!

Nikki
Many MANY thanks for your kindness!!

In keeping up with my normal antics and carrying on a regular life, I went to a nice rowdy rock concert last night after spending the day shopping and cleaning my house. I'm a little depleted of energy today and just trying to take it easy. Its not so bad to need a quiet day

 
Old 02-14-2010, 07:44 PM   #10
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Re: Just diagnosed with MS.....dazed and confused

You know what? Thats GREAT! Hope it was a really great concert! Yes, you learn how to listen to your body and slow down when necessary, and yes you learn that you have limits, but Im actually grateful for that. Its taught me (MS has taught me) to be good to myself and listen to my body...in a strange way, if this hadnt happened to me, Id probably be dealing with heart and stress related issues.....I really do push myself too hard. At least now, I take one day for me, and when necessary force myself to end my day early. (That means 7 pm instead of midnight!) Between school, my job and my family.....come on March 13th (thats bikini holiday!) Ive been counting down the days to this vacation for 7 months! Hugs, N
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Old 02-15-2010, 05:34 PM   #11
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Re: Just diagnosed with MS.....dazed and confused

It was a fantastic show. 6th row center. Loved it! My legs started to get a little numb during the show but I ignored it and had a blast! You are correct in that this is a good lesson in being aware of ones body and when enough is enough. Like you (to a lesser extent) I have been burning both ends and I need to recognize when it is time to stop.

Sounds like you deserve your bikini vacation. I'm incredibly jealous. We were in FL for vacation a couple of weeks ago, but its just not the same.

I am also recognizing now that symptoms and issues I have had which I thought were related to my vestibular loss seem to be more related to the MS. I thought I saw you posted something somewhere about feeling like your head is unattached from your body. I've had that feeling for a long time and always thought it was from my BVL but perhaps it was more of a MS issue then anything.

 
Old 02-16-2010, 04:52 AM   #12
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Re: Just diagnosed with MS.....dazed and confused

Yes, I said that. Its funny. I knew absolutely NOTHING about MS when my hand and fingers went numb....I was fortunate enough to have a wonderful MS nurse do my history and physical and the questions she asked....well, to this day, I remember having that "AH HA" moment...yes, heat did make me dizzy, yes hot showers did do me in...yes, I had been tripping over my own feet and being laughed at in the office. Yes, I had had eye issues where I saw floaters, and sometimes color blindness seemed to affect me. Yes, yes, yes!!! Oh my goodness? Multiple what???? And, then, the moment of truth...and panic.

Fast forward 5 years. I deal. I pay attention to my body when it is exhausted. I exercise at least 5 days a week. I try to eat right. I take the right supplements. I do my shots, even when I dont feel like it. I see my doctor regularly. And, I have a life. Tomororw is MRI day- I get them every 6 months. Im alittle nervous. Not of the test, but of the results...I had blood work done last week, it came back better then its ever been. Usually my cholesterol is off, usually my triglycerides, but this time they are perfect! of course I did wake up with a sore throat today and a cold...but could that be the less then steller winter weather we are having in the great northeast? Its only been in the teens for about 2 months now and Ive got almost 3 feet of snow outside my door. About time I got a winter cold.

But thats important too. I was feeling sluggish all weekend- and wondered what was going on. Was it anxiety? Was it MS related? Its important NOT to let every little thing become a major thing. 2 days later, I have a head cold. I ache, I feel lousy and Im sneezing. But guess what? Its Feb and its normal for me to get sick! I have to keep things in perspective and realize that this too, will pass.

So, you had a great show and you learned that balance is important. Balance as in, fun one day (night) extra rest the next day.....good lesson to learn! You take care of yourself and your body will actually respond positively. Youll see.

Im so glad to hear you are doing ok with this. Promise- MS isnt the end of the world as you know it.
Hugs
nikki
Ps dont be jealous of the vacation. Its been 2 years since we went anywhere and I earned this. Between school and work, I havent had a week for ME in 2 years...and its only a week. But I am excited to be going!
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Old 02-16-2010, 07:19 AM   #13
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Re: Just diagnosed with MS.....dazed and confused

MSNIC, I have to say that reading your posts always put a smile on my face. You always take the time to answer everyone's questions, and you do it with such a positive matter of fact way! Thank you again....!

 
Old 02-16-2010, 10:33 AM   #14
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Re: Just diagnosed with MS.....dazed and confused

Tiffany. Thank you. And, Youre welcome! It wasnt always easy....I clearly remember the days of being first dx and starting injections. I totally remember the trauma of learning how to do my own shots and the side effects...however, as time goes on- things do get easier! I promise, I know you are newly diagnosed and its a horrible time, but at least you know what you are dealing with, right? Someday, youll be dishing out advice just like me and Ill be reading your posts!!
Hugs,
Nikki
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Last edited by MSNik; 02-16-2010 at 10:35 AM.

 
Old 02-17-2010, 03:56 PM   #15
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Re: Just diagnosed with MS.....dazed and confused

I must say that knowing WHY I am completely exhausted is extremely helpful to my psyche. I thought I had just become lazy and complacent with life. So I fought it because I didn't know what the underlying reason was. Now that I know, its much easier to read what my body is telling me to do!

It sounds like you deserve your vacation after working so hard! You seem to be a huge source of support for everyone on the board.

I hope your MRI goes well tomorrow. Personally I hate the tunnel of doom as I like to call it. I'm extremely claustrophobic and it causes me huge anxiety. Great news on your blood work, I hope the trend continues with your MRI

 
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