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Old 08-02-2005, 05:41 PM   #1
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It just keeps getting better!

Well... I have been on this rollercoaster ride for a while. Doctors batting around different possibilities. Devic's, MS and Lupus. Well one of them got answered today. My Lupus panel came back positive. Not even borderline. The nurse said it was a definate positive. My sister has SLE so this was the main reason for testing for it. But I really didnt think I had it. Now, I guess I was wrong. The doctor did say that it was possible to have both, but he is leaning again more toward devic's.

I am just holding my breath now. I am atleast glad that I am not crazy. I was beginning to think I would have to put on my gravestone "I told you I was sick!"

Erin

 
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Old 08-02-2005, 05:55 PM   #2
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Re: It just keeps getting better!

Erin, you are too funny! We all could have TOLD them you were sick! Are you still having the LP tomorrow?
Lupus, MS, whatever the case, you are on the list I'm taking to Megafest tomorrow for prayer.

 
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Old 08-02-2005, 06:29 PM   #3
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Re: It just keeps getting better!

yep, believe me I asked!!! I saw the opening and was hoping..but no cigar. Like I said my Doctor feels it is entirely possible for me to have both. Now that would **** me off. I am ok with the SLE... but come on! both would be way too much. Only one disease per person should be the limit I say! Here I go a year just trying to find ONE answer. To get both would just... really **** me off! I still think devic's is highly likely. When I read about it, it fit. Everything fit. Couple that with the fact that it happens to people with SLE and it really fits.

I called my sister and we talked. She said... I could have told you that you have it...but you wouldnt have listened. And she is right about that. So I will go tomorrow for the dreaded LP...they are also going to do the NMO bloodtest and send it off to the Mayo clinic. We shall wait and see. I just am kind of floored. I have had the Lupus test 4 times and it was always negative. Only once it was borderline. But this time she said it was definately positive. The test that they found it with was a Ro/SSA. Apparantly when you are ana negative the ro/ssa test can diagnose you.

Erin

 
Old 08-02-2005, 07:25 PM   #4
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Re: It just keeps getting better!

well i'm sure getting answers brings sanity to the situation! Good luck with the LP tomorrow... i still have my fingers crossed that one of those blood tests will be enough and I won't have to go through with the LP! I thought taking the tape off my arm from the IV hurt! haha Good thing is my son will be staying at his fathers, so atleast if i'm sick I dont have to worry about my son too. He turned 3 today... feeling old! But good luck...

 
Old 08-02-2005, 08:04 PM   #5
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Re: It just keeps getting better!

I totally agree...isn't one disease enough, already!! Good luck tomorrow, just remember to lay flat and not bend over the next few days!!! I'll be thinking of ya. Sue

 
Old 08-02-2005, 10:45 PM   #6
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Re: It just keeps getting better!

Hi, I have probable MS and I'm going through the same thing and waiting for my 2nd lupus blood test results. My first one was border line 5 months ago. They said it wasnt positive and it wasnt negative either. So I'm sure i'm screwed just like you. If it is positive , we can chat on how life sucks together. Take care
---Moon

 
Old 08-03-2005, 09:24 AM   #7
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Re: It just keeps getting better!

The thing is, all the diseases are related. So, you can't really count them separately. You have an abnormal immune system, which reacts improperly to internal stimulus. That condition can manifest itself in all sorts of ways. I think that is part of the reason why it is so hard to diagnose MS, and why everyone's symptoms are so different.

As far as DeVic's, I was told it was just a more specific sub-classification of MS.

 
Old 08-03-2005, 10:02 AM   #8
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Re: It just keeps getting better!

I think the last posting is correct, all of these diseases are related. I hope your tests only show you have 1 thing to deal with, but if there turns out to be two things (i remember when i was DX'd with MS after 20 years of Type I diabetes) i raged at the neurologist, "you've GOT to be F-(#$)(%& kidding me!" She was not kidding me. So, know EStevens64 that you will be OK with 2 diseases. I think it's good advice to think of them as one, however. How do I make this THING that is manifesting itself a couple of ways BEHAVE? that is my personal goal anyway...

 
Old 08-03-2005, 11:00 AM   #9
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Re: It just keeps getting better!

What is devics and SLE?

 
Old 08-03-2005, 11:51 AM   #10
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Re: It just keeps getting better!

SLE is systemic lupus erythematosus, but most people just call it lupus. DeVic was the doctor who identified a cluster of symptoms in people who have MS. They happened as a package in enough people to classify it as its own syndrome within MS. Optic neuritis and tingling in the arms/hands and legs/feet are the symptoms.

 
Old 08-04-2005, 06:54 AM   #11
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Re: It just keeps getting better!

Quote:
Originally Posted by djpihavems
SLE is systemic lupus erythematosus, but most people just call it lupus. DeVic was the doctor who identified a cluster of symptoms in people who have MS. They happened as a package in enough people to classify it as its own syndrome within MS. Optic neuritis and tingling in the arms/hands and legs/feet are the symptoms.

Actually Devic's is very simillar to RR progressive ms, this is what the neuro told me yesterday. The only difference between progressive ms and Devics is that it does have a RR form. But there is a deficit left behind afterward. It can also only strike once. But the one time is much more devistating than the RR form. There is also a 10% mortality rate and you have to take Chemo drugs and AZT. MS sound much better to me. LOL...my sister told me last night that I just want my own disease. I dont want to share hers...she also said it was just like me to try and one up her!! LOL... I love my family!! It is so good to have a family that can laugh through ANYTHING. If I start getting depressed, frustrated or too serious... I just call my mom or my sisters and I am fine!

Erin

 
Old 08-04-2005, 09:06 AM   #12
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Re: It just keeps getting better!

Quote:
Originally Posted by EStevens64
Actually Devic's is very simillar to RR progressive ms, this is what the neuro told me yesterday. The only difference between progressive ms and Devics is that it does have a RR form. But there is a deficit left behind afterward. It can also only strike once. But the one time is much more devistating than the RR form. There is also a 10% mortality rate and you have to take Chemo drugs and AZT. MS sound much better to me. LOL...my sister told me last night that I just want my own disease. I dont want to share hers...she also said it was just like me to try and one up her!! LOL... I love my family!! It is so good to have a family that can laugh through ANYTHING. If I start getting depressed, frustrated or too serious... I just call my mom or my sisters and I am fine!

Erin

Thanks for the correction, Erin. You should call my neuro and set him straight!!!!

 
Old 08-04-2005, 05:53 PM   #13
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Re: It just keeps getting better!

Tell him to read Wingerchuk (the leading dr of the disease) ... that is what I was told.. I read almost everything I could find and most of it was very clear. Also when I was told it was a possibility I wanted to know everything about it. That is how I deal with things.

Erin

 
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