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Date Joined Aug 2006
Total Posts : 20
Posted 9/5/2006 6:07 PM (GMT -6)
I am still waiting for results of lp. So I am learning I am in limboland:) I've been reading a lot of threads to better understand all of this. I was just wondering why some people have to get more than 1 lp? Does the CSF change?
Also, reading you guys posts makes me feel like I'm not a nut case. So many things written by others are how I feel. All of this is very emotional and hard to deal with. It's hard to keep talking to people around you about
this....they have their own problems. It's nice to be able to come here and let it all out. So I just want to say thanks for listening and answering all the questions little and big with such concern.
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Date Joined Mar 2006
Total Posts : 2146
Posted 9/5/2006 6:31 PM (GMT -6)
U'r very welcome and i'm glad u feel comforted in being here. I too have found comfort in being here with all the caring and experienced people. U'r NOT a nut case, by the way! ;) I"m in limboland with u and have felt that same way many times before...but as u said, they have their own problems and don't tend to be able to offer the support u may only find in people who've been there too. Please keep coming and ask as many questions or make as many comments as u want/can. I'll be watching for u'r lp results and praying they yield some answers for u. Take good care!
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Date Joined Jun 2005
Total Posts : 2135
Posted 9/5/2006 7:07 PM (GMT -6)
I think it's rare that folks get more than one LP, unless something went awry with the first...and the test results were inconclusive. You might have seen where I had 3 .. I developed a severe blood infection, cause still unknown..(but not related to having MS), and so had "extra" lp's... the first that was simply to diagnose the MS, then several years later, lp's to deal with the infection.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....
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Date Joined Jul 2006
Total Posts : 95
Posted 9/15/2006 4:12 AM (GMT -6)
I know exactly how you feel. I have been going through the same process. Very frustrating not knowing exactly what it is. You are not a nut case and doesn't it make you feel bad when you pick up those "vibes" from the medical professionals who are supposed to be helping you. I have had only the one lp which showed negative for bands but having put the question to others in the forum ms is still a possibility and you maybe one of the 10% that goes against what they believe to be "normal." So who is to say what is "normal" and what exactly does that mean? Just a bunch of people doing tests to come up with a "normal" result. These guys can make a mistake just like we can so your best minder is you. If I don't feel that my treatment is right and necessary I am the first to object. I feel with my condition that nobody is taking me seriously and as you do, they make me feel l like I am over reacting to my situation and maybe this is just depression or an anxiety disorder. Well we do not WANT to feel this way, come on, wouldn't we all be out there and enjoying our lives if we physically could? It makes me angry and also terrified of what will happen. You may have seen some of my other posts in here and the recent "reaction" I had while I was in the garage. Well today it happened again, I was in a shop this time and the vertigo was not as severe but my right leg was just in so much pain. It really frightened me, thought I might collapse at the checkout but thankfully the vertigo subsided quickly but the pain in my right leg is still severe. If no better tomorrow I will front up to the hospital. I will probably sit there for hours on end. The ER here is just so understaffed but what can you do?
Hang in there. We are all here to support you and a lot of us are in the same situation as you are. Many of us are in limbo and don't really know what to do next. Take care and trust your instincts. You are the most important person that is in charge of your well being. Keep in touch through the forum, it is so great.
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Date Joined Sep 2006
Total Posts : 1
Posted 9/15/2006 6:25 PM (GMT -6)
wow its good to know i'm not alone, the first time I saw a neurologist she told me there was absolutely nothing wrong with me and she was sure of it, but she'd order an MRI because if not it would keep coming up.........2 days after the MRI she called to say they found something. a chiari which I had surgery for. still I have symptoms and they seem to last longer when they come now. so off I go to a nuerologist, this guy tells me there is absolutely nothing wrong with me neurologically he says i've been having miagraines all these years and should have been on meds years ago............when I asked what the white spots were that showed up on the MRI when they found the chiari he hummed and hawed and said well i'll do another MRI but I know it won't find anything wrong.........I kept thinking famous last words. why don't they take us serious, are they really that into themselves that they believe we would rather be wasting our time with them or going for tests when we could be spending time with our families. I want to be well, I want me back. I can still see my son a few years back when I just wasn't feeling well saying "what's wrong with you, you use to be fun". broke my heart, I haven't been much fun since but not from not wanting to be, its hard when you can't feel your arm or leg or your vision is all screwy, or your balance is so off you stagger when you walk. the eye pain, the numbness and tingling, the trouble talking at times, the poor hand coordination, the fatigue, and weakness.......
and all this is caused from a migraine????
We know our bodies and we know when something is wrong, I don't go to see them to see if something is wrong I know something is wrong, but I want to know what it is. I don't want meds pushed at me to shut me up, I want what ever is wrong fixed so I can get back to living my life
i'm more than an illness its just a small part of who I am but right now its taking over my whole life and I WANT MY LIFE BACK so listen to us darn it we know how we feel and we aren't crazy or whimps or looking for attention.
we want to be well again, or at least know what is wrong so we can do everything humanly possible to fix it or control it cause life is too short to be wasting in dr.'s offices or going for tests.
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Date Joined Jul 2003
Total Posts : 667
Posted 9/18/2006 1:07 PM (GMT -6)
I know just how you feel...I was getting to the point(well,I did a long time ago) that I dont even discuss my problems with anyone,for fear they think I am crazy. The day I went in to my neurologists and had confirmation of MS dx he says to me 'doesnt it feel great knowing you are NOT crazy'....I couldnt say it better myself! I have had so many people in the past 4-5 years act like I am making this all up,including doctors. I have learned that I am lucky...I was dx from start to finish in about
3 weeks time...from my MRI to the LP to the evoke potential testing...however,my doc says I have most likely had MS for at least 5 years. I hope you find the answers your looking for...and soon! I know it gets very frustrating
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
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