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.

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 :eek:

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!!! :p

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 =)

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! :)

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.

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?????????:confused:
GIVING ME HOMEWORK?!?!?! :eek:

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!:hug:
My thoughts are with you. Hang in there!:)

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.

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! :hug:

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.

Beauty, you are a strong person! You give inspiration to others. You are just having a tough time right now with the dx. It is understandable. Even though you suspected for 8 years, it is different hearing the definite! But at least now you know and you can start to improve and make yourself healthy in all the ways your body needs it. Take your time. It will come around and become second nature for you with all you need, vitamins, exercise, mental, etc.

Also remember we all care and are here for you! You are lucky to have such a supporting DH also.
:grouphug:

Just wanted to share a :hug:

I'm glad you got a quick answer when you sought it out. It's wonderful to have a place like this to come and work through it....so glad you found us!! Hope you are doing okay....you appear to be a very strong person....hang in there and keep us up-to-date with how you are doing.

:hug: Sorry to hear about the dx, but at least you know what you are up against now.

My first reaction to the dx was relief, and then I went through an emotional rollar coaster for awhile. Be kind to yourself this first year.

Well . . . sorry it was confirmed, and that you have to come out of denial. :(

I was first dx with probable MS in 1991, but after reading that there were no treatment options available, I promptly went into denial. They had done a LP, but I never asked the results and I refused a MRI. The writing was on the wall though . . . as I laid mostly paralyzed for 3 months.

When I would go see my doctor for anything, over the next several years, he was not allowed to mention the "M" word. I would tell him about the medical concern of the day/week/year, and he would test me for everything it might be. At the end of the testing, most times he would just have to say "everything is fine" . . . then off I'd go on my merry way again.

When I couldn't deny it any more, I still did. :D I proposed all sorts of potential dx to my doc, and he humored me by pointing out why it couldn't be "that". One day he had finally had enough though . . . and he said, "you have been to 4 specialists over the years, who have all agreed you have MS".

No more denial for me. :(

I knew all that time, just as you probably did deep down too. I appreciated the time I had to get used to the idea that it might be a disabling chronic illness, and I am glad the doctors let me live in denial in the meantime.

You obviously have very strong coping mechanisms, and you will get through this time of reckoning. A month or three is not going to make any difference at this point in the game . . . so take the time you need to come to grips with this before making any decisions.

Cherie

Wow Cherie, sounds a lot like the last 8 years of my life, except for the docs part... I don't think they would have played around. It is amazing the things we will do to hide the truth from ourselves!! Why do we do that... sheesh!!

Thanks for the advice and kind words. I have researched the DMDs, and I don't like any of them frankly...LOL I am contemplating NOT taking any. I seem to have a very slow progressing disease, but I know with any relapse that can change. DH does not like that. I like the LDN research I have done so far. Do you take an interferon with that? I know copaxone has been taken with it, but I want to know if anyone had taken it with interferons.

Anyhow, thanks again for sharing your story. I am just having a pity party day today!!

Hugs,
Connie

Hi Connie,

I think my first excuse was that there was nothing they could do for it, so why bother knowing? :confused: The first neurologist, who dx me with "probable" said, "if it is MS . . . it would be my recommendation that you do not have children, due to your presenting symptoms and uncertainty of this disease". :eek: I was 31 at the time, and the clock was ticking. I've since had two daughters who are now 16 and 12, and I really don't think I would have made the same decision at the time if I KNEW it was MS. Denial was a safe place to go. :D

They were doing trials with the interferons and LDN, but I haven't heard the results yet. Last I heard, the doctor who "discovered" LDN for MS was recommending Copaxone was ok, but not the interferons.

I take LDN alone, mostly because I have considerable difficulty with many drugs, but also because my first few specialists told me that steroids and the CRABs weren't going to help in my case. We have the highest prevalence of MS in the world, here in Canada, and my neuro's worked out of the research center that conducted many of the trials on the CRABs.

Most of my lesions are in my spine (which is not particularly good), and because of that, they suggested that the CRABs (and/or steroids) would not be effective for me. Of course I was not happy with that answer :eek:, and researched myself . . . but in the end, I agreed with their recommendation.

You are right, this disease can turn on a dime, but that can happen with or without meds too. I am now 17 yrs into it, and doing relatively well I guess. There have been some hard times for sure, but I won't regret my decision.

Just take your time deciding, and know that you can always change your mind (to either go off again, or on) in the future.

Cherie

Wow, I can see why you made that decision, and I am sure you are glad you did everytime you look at your kids. I am from PA originally. That is up in the area where the prevalence is pretty high in the US... above the 37th parallel. I am amazed at what I have learned about this disease. I am a research fanatic... always have been. I find this disease very intriguing with all the things that go with it, the fact that they can't pin point the cause yet, the difference from person to person, the way the areas of the world impact the prevalence... but, it also makes it very scarey when you have it.

I have heard the DMDs/steroid thing with the spine lesions. I have only had my cervical spine done, can the lesions go lower than that? Luckily, I suppose, I have none on my spine. I have 4 lesions, on is on or near my brainstem, and apparently that is the one that does and will cause the most trouble for me... until the disease progresses and I get more I guess...

I see the specialist on the 13th and I am going to discuss that with him. I am trying to do as much research before I see him cause I know the second opinion part is a moot point, and my regular neuro is not as knowledgable with this disease, so I want to learn as much from him as possible and bring it back to my neuro for my treatment.

Thanks again!

I am still trying to figure out everyones story, so thanks for sharing more of yours!

Yeah, I am very glad I had my family, and don't regret that decision either. :)

Spinal lesions are very sneaky, and from everything I've heard, once dx they often just rely on our symptoms to determine if we are likely to have lesions there. I know my docs can accurately predict which area of spine is acting up, based on the symptoms I present with. I don't have sneaky lesions though, mine are pretty obvious. :(

We can get lesions in the spine down to the L-level of the cord (for sure, maybe lower), but that is the T level of the spine. Our spinal cord matches in size to our spine when we are babies, but the cord doesn't grow and the spine does. Therefore, they only check the C and T spine when looking for lesions, but lesions may be found in the C, T, or L of our cord (perhaps even lower, but all housed in the T spine or very high-up L spine). Does that make sense to a nurse?

Yeah, brainstem ones aren't that great either. :( It's a nasty disease all around.

Good luck at your next appointment.

Cherie

i havn't read everyone's responses to you but wanted to add that i've been on copaxone for 5 yrs without any SE's. i tolerate it well. and while i've technically progressed to SPMS my condition is stable as have been my mri's.
i have c-spine and brain lesions and had a + LP with 2 OGB.

i know that each of us has to make an individual decisions about meds and a lot of folks don't take any.
my personal feeling is that since MS is a non-curable, progressive & disabling disease i'd rather not wait for a relapse to tx. who knows how'd i even be without it. maybe that's just my disease course.

i chose C initially because i was working FT and was single. i didn't want to have the flu like SE's. i also had a hx of depression and didn't want to chance taking the interferons.

so i chose to take daily shots and have no SE's.
i'm sure you're going to be so knowledgeable by the time you're ready to make the decision, yes or no.

whatever you decide will be best for you. and, you can always change course down the road.

You just said exactly what I am thinking. While I would probably choose beta if I could guarantee no SE, the SE do scare me, especially with everything that is going on in my life right now. I can't afford the flu like s/s. Like you, I also have a hx of depression, and right now I am not on anything. I would LIKE to keep it that way, but if I choose an interferon, I would probably go on an anti-depressant as a preventative. My dad was on interferon during his cancer treatment, and while it is probably different with dosages and stuff, it made him CRAZY! He could only tolerate it for a week.

I am still researching. I told DH, if I have to make a choice NOW, it will probably be C, and when my life calms down a bit, and I can afford to test the waters with the SE, I may choose beta. I am also going to discuss all this with the specialist I am going to see and se what he has to say about it.

I am intrigued with the LDN though as well... and am thinking C may be the way to go because I am considering that. Working the the addiction field, I give an amino acid treatment and we deal with brain chemistry and how that affects addiction... so I am intrigued by the epinephrin, serotonin, dopamine, and all the neurotransmitters... which is one reason I am trying to stay away from antidepressants... I want my chemistry as close to God given as possible to see how *I* can effect it!

Thanks for your insight!!

you're welcome.
please let us know how your appt goes.

i forgot to mention that my neuro told me it could take up to 8 mos for the copaxone to start working in my body.

i don't know it the interferons have that or not.