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Old 05-06-2008, 01:23 PM #1
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Default The LP results are in...

And it confirms my Dx.

I have greater than 5 oligoclonal bands that are not supported in my serum.

I have a pretty elevated IgG index. Normal is 0.66. Normal (which is elevated) for MS is .7 or above, mine is 1.62.

Albumin is normal, so I am not leaking protein to give me a false positive.

Ugh...

Now a second opinion really is a moot point. But, it is good to have the confirmation and additional information. So, I will take what I can from the visit, and discuss it with my regular neuro who I will b following up with.

Now I have to really consider which DMD, if any, I want to go on.
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Old 05-06-2008, 01:40 PM #2
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Gosh, now I am going back into the OMG, is this really happening stage. I just wanna go home and crawl into bed, but I have a pt until 6 tonight and it is an hour drive home. Maybe my boss will let me go recline and have a good cry. I haven't cried yet. I don't know if it is even worth it. AAAARRRGH!!!! I was so hoping there would be some sort of huge mistake in all of this.

I am not the healthiest person right now. I am SUPPOSED to take a host of vitamins because of my gastric bypass.... I don't. I am SUPPOSED to exercise to have continued success with the weight loss and maintenance... I don't. I am anemic because I don't take my vitamins, I have a low protein profile because I have been neglecting my protein intake, and even though I have shed 150 pounds, I still have a terribly high cholesterol. I assumed losing weight would take care of that... but it hasn't, and I have not been diligent in getting it checked. I have a very high genetic factor, so I guess I will be going on cholesterol lowering drugs as well...

I just found all this out with the fax o my LP results, cause it had my 18 month check up on it. Fun stuff.

I have neglected myself badly. It feels good to get this out. Maybe now, I can look at this post and see how dumb I have been, and beat myself into submission. Good thing I am not my own nurse, or I'd be FIRED
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Old 05-06-2008, 02:01 PM #3
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Congratulations???

Well, at least you Know now. That was important to me.

Well, you can't fire yourself and you've only got 1 YOU, so now you need to take better care of you.

I'm having a struggle making myself eat better and exercise. I did just get home from a bike ride. Such a beautiful day out there.

Do a little each day to contribute positively to your overall health. After awhile you'll pick up speed and it'll become 2nd nature to make the right choices.

Anyone who can lose 150 lbs. can do anything!!!
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Old 05-06-2008, 02:17 PM #4
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Your right TT. I am pretty sure I "knew." Heck, I have had a very strong inkling for 8 years that I had MS, cause I was told to follow up with a neurologist to get tested for it. I have even brought it up to the docs since then about the problems I had in 2000 and they suspected MS. No one, including myself, took the ball and ran with it... until I show up at the docs almost paralyzed.

Am I glad I know... IDK. I would be glad if nothing were wrong... as I am sure everyone in the wrold would be. I hate having to admit I have an illness, something I can't control. That is stupid, isn't it.

Am I glad I can start trying to take better care of myself and prevent as much deterioration from MS as I can... yes. I suppose I am...

I guess I just need a bit more time to get used to it.

Ah, my loss of 150 pounds is one of my greatest feats. That and getting my wonderful husband to fall in love with me... which didn't take much on my part... guess he was easy... LOL I *DID* do it (lose the weight) with a lot of help (Gastric bypass) but it is up to me to keep it off and keep myself healthy.

Thanks =)
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Old 05-06-2008, 02:27 PM #5
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Wow, you've suspected for 8 years?

I didn't suspect a thing until a week before I got the MS dx.

I attended a seminar for MS Newbies last year. The shrink who spoke insisted that there are 4 stages to accepting MS. Seems like the 1st stage took about a year to get over the denial, followed by some other equally drawn-out confused states of mind.

I had a private conversation w/him and said I hadn't experienced any of those stages. He assured me they'd come.

Happily, he was wrong. I had just one bad day. BUT, I don't have blindness or paralysis or anything terrible. Just numbness and some other random stuff. So I really don't have much to complain about.

There are so many folks around here who really struggle and have room to complain, but choose not to. Really admire them.

So, allow yourself a few days/weeks to adjust. Surround yourself by people who love and care about you. Talk about it -- such a weird disease, isn't it? Then get on with it. Glad you have your DH by your side.

Remember we are a caring bunch here at NT. Come and hang out any ole time. Keep smiling and transforming!
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Old 05-06-2008, 02:40 PM #6
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Quote:
Originally Posted by Twinkletoes View Post
Wow, you've suspected for 8 years?

I didn't suspect a thing until a week before I got the MS dx.
I was hospitalized in May of 2000. I had blurred vision, blackouts, slurred speech, memory lapses, trouble swallowing, loss of coordination, and loss of balance. They thought I was having mini-strokes. When they ruled that out, they told me I may have MS. They wanted me to follow up with neurology. I was a new nurse, working 2 jobs, in school, and traveling home to PA from VA every weekend to visit with my terminally il father in law. I refused to follow up, I didn't want to know.

Over the last 8 years, I have had things happen to take me to the doc. They always ask about previous hospitilzations, I always told them about that one, and what they said. No one ever thought to continue with the testing, cause my symptoms came on more subtle and one at a time, or at least I only complained one at a time, when I did complain (which took A LOT!).

This last relapse was after a 103.8 fever. I woke up and could barely move my left side. It went on for a week. DH wanted me to go to the docs, and I said it would pass. It got worse. I finally gave in...

... and here I am...

I guess I have been in denial for so long, I don't know how to let it sink in... or maybe just face it. I don't really know how I feel about it.
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Old 05-06-2008, 05:09 PM #7
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Quote:
Originally Posted by beautytransforming View Post
And it confirms my Dx.

I have greater than 5 oligoclonal bands that are not supported in my serum.

I have a pretty elevated IgG index. Normal is 0.66. Normal (which is elevated) for MS is .7 or above, mine is 1.62.

Albumin is normal, so I am not leaking protein to give me a false positive.

Ugh...

Now a second opinion really is a moot point. But, it is good to have the confirmation and additional information. So, I will take what I can from the visit, and discuss it with my regular neuro who I will b following up with.

Now I have to really consider which DMD, if any, I want to go on.
When I had to choose which type of shot, they gave me packets with booklets and dvd's from four companies. I went through everything two and 3 times on some. I kept coming back to the same one. When I talked to the neuro, he was thinking the same thing based on my very active progression over a several month period. Everyone is different.... I chose Betaseron based on the fact that from what I learned it is the only one of the four that may possibly help the more progressive ms. The other ones might have been a better option had I been dx 13-15 years ago when it most likely had started.

Everyone has to make their own choice, I know you are feeling overwhelmed with that right now. I know I felt like.... YOU HAVE DUMPED THIS DISEASE ON ME.... I'M FEELING LIKE CRAP... MY WORLD IS CAVING IN.... SO YOUR ARE DOING WHAT?????????
GIVING ME HOMEWORK?!?!?!

I was downright mad....and I don't get mad. I'm pretty evenkeeled. It was exhausting to go through all that information. So my prayers are going up for you during this process.

I'm glad you got the 2nd opinion. It's at least peace of mind!
My thoughts are with you. Hang in there!
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Old 05-06-2008, 05:15 PM #8
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dear BT,

i can be your nurse. i've been one for 37 yrs
mostly NICU but i still know enuf.

i still remember the exact circumstances when i got the news. even tho i was expecting it i was still shocked. i did have one good cry at a friend's and then went into my get info mode. the knowledge gave me control of an out of control moment in my life.

TAKE BACK YOUR PERSONAL POWER bt. your wt loss is incredible to me.
i've been struggling in that dept for a long time. i lost 40lbs and gained back 15. the gang on my thread has been there thru the good and bad times and we can be here for you.

i'd like to encourage you to make a plan of action, or, a plan of care for yourself, just like you would a pt. like
1. get your vits
2. eat small meals to increase your protein
those 2 alone will give you more energy to cope with this dx.

don't worry about exercise right now. just work on strengthening your body and mind nutritionally. hire a RD for a few visits if need be.

maybe it's time to visit your pcp to help set up your plan.
feel free to PM me. i care.
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Old 05-06-2008, 05:18 PM #9
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Quote:
Originally Posted by beautytransforming View Post

Ah, my loss of 150 pounds is one of my greatest feats. That and getting my wonderful husband to fall in love with me... which didn't take much on my part... guess he was easy... LOL I *DID* do it (lose the weight) with a lot of help (Gastric bypass) but it is up to me to keep it off and keep myself healthy.

Thanks =)
We both know, this is something to be very thankful for. And it was not "JUST" the surgery. It was also YOU.... we know the surgery in NO guarantee. I know how glad you are that you have achieved the weight loss, especially now knowing about the ms. It doesn't mean you are always going to be perfect about eating. You are still only human. So give yourself a break. Allow yourself to be a human. Then... tomorrow will look brighter and you will get back in the saddle again. I have faith in you!
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Old 05-06-2008, 05:21 PM #10
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I am sorry that you are going through all of this. So many of us have been where you are at right now.

My 1st year was the worst and things got better after that.

Hang in there. You will do fine. Take care of yourself and don't beat yourself up over what you did or did not do in the past. Just move forward in a positive way.
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