I just got great news that has angered me soooo much. I just had my 2nd blood test for nmo and it came back negative. In the meantime I've been taking cellcept. Does anyone know if the medicine can have an effect on nmo blood test results? And has abyone ever heard of the fluid being contaminated causing it to be positive?

So as the weeks go on and taking my cell cept I feel soooooo weak and tired. My energy level is severely decreased. Is that anything you've experienced? By the time 700 pm rolls around I am exhausted. And I feel really sick at night. I think it may be how I am taking it. I take one at 600 in the morning and then at 900 at night. It says one in the morning and one in the evening but do you think I'm not feeling well because I let too much time go by in between doses? I should consider that every 12 hours would be a more accurate dose since I take my first dose at 600 in the morning. Does anyone know the reasoning behind no food 1 hour before or 2 hours after for taking the pill? Is it just so that the pill absorbs on an empty stomach?

For those of you who have lost vision in your eyes or have blurred vision do you also fail your visual field test? My right eye is extremely blurry but I still passed my visual field tes. That seems odd to me

So we go through stages with how we handle things in life and I've been really strong thanks to you nmo friends I have made. I wanted to come on here because I broke down yesterday feeling so many things and wondering sometimes how doctors get their titles and who gives them the right to be a certain way with their patients. So I get a phone call yesterday from my first neurologist who ran the blood test for nmo saying that the mayo clinic called and said there might have been something wrong with the machines with my blood test and they want me to go for another blood test to make sure this wasn't a false positive. You can imagine my disturbance getting a phone call like that from the quack when it took me a long time to even agree to take the cellcept since I was extremely reluctant to take it. So I try to get a holf of my other neurologist at the university of chicago with no luck to tell him what my doc said. So I took matters into my own hands and contacted the lady at the mayo clinic whom I was asked to be a part of the study for nmo. Although she couldn't answers some of the questions given her title, she talked to thed doctor right away for me. The doctor at mayo clinic said that sometimes there can be gray areas and they wanted to test my blood again.

I cried on the phone with her mostly because I didn't understand how it took two months for them to ask me for another blood test and I don't understand what she means by gray areas. She has been so sweet with me and told me to do one fun thing a day until I have the results and try not to think about it, but I think I've reached an emotional stage of why? Why can't anyone give me a straight answer? Why do I feel like if it isn't this what is it? Why am a taking a medicication that suppresses my immune system when someone wants to double check me? Granted I am completely grateful for the double check and them taking the initiative to be certain but I am utterly pissed at my first neurologists bed side manner along with his inability to understand this disease. I am going to ask the sweet lady from mayo to send it to my neurologist at the university of chicago because he doesn't put me in a panic like this.

I just want this to be over and stop getting poked with needles for at least a couple months, I want the first neurologist out of the picture and I don't know why he worries me like this. I want to deal with this and move on and be told when or when not I can have babies. I've already come to the acceptance that my babies have to wait at least two years and he called me and made me feel worse. How do you stay calm through this roller coaster ride?

Jenny

I just started taking cell cept on Saturday and I don't feel so well. I feel like I have a cold, my throat hurts mostly and my head feels heavy...I can take over the counter cold medicine while on cellcept right? Have any of you done that?

Hi everyone! I just wanted to update you on my doctors appointment with th e university of chicago neurologist dr. Javed. It went extremely well! I really trust him and feel like he really spent the time to talk to my husband and I (we were there an hour and a half). Ill start with the bad news. First I can't have babies until I make it past at least a 2 year mark without a massive attack (that was my fear). I started a two year plan on cellcept at which time I have to be super careful not to get pregnant ( I guess it could be worse right?) Second as he place a vibrating object on my foot, he told me to tell him when it stops. Well I said "stop", he placed it on my hand and apparently it never stopped vibrating!! Then he scratched the bottom of me feet only to not get the reaction he had hoped for. I think I've lost a little sensation in my feet. Since it comes and goes he just said to watch it, since it doesn't last more than 24 hours. Luckily it happened while I was there at least he didn't think I was crazy!
Good news, dr. Javed has a personal interest in this disease as he has a close family member who was diagnosed with it and when I asked him if he would treat that person the same way he's treating me, he said yes. Therefore I feel like I am in good hands. Also he said if I can go five years without a massive attack, statistics show that I have a less than 5% chance of having massive ones, only minor ones. He wants me to go for another visual field test as he couldn't understand why they would say my vision was fine when clearly my peripheal was way blocked. All in all I feel like I was better informed and I feel real comfortable now. My stomach has been a little uneasy with the cellcept but I'm sure that will go away

I have a question. My feet and lower legs have periodic "fall sleeps" which happened last night it was really hot. Also I was on my feet a lot on Thursday night and when I came home I iced them and passed out from being so tired. I woke up like 2 hours later to what it felt was like my foot asleep. I went to get out of bed to "wake" it but I couldn't even use it. How do you know if that was part of an attack or if it truely was just asleep... what does the numbness feel like for you guys

Hi All,
since this is so new to me, and I am going to see Dr. Javed the specialist for the first time since being diagnosed last Monday, I was wondering if you could help me to make sure I ask the right questions. Is there anything I should know to ask him about living with NMO? Also, not sure if this is appropriate to ask, but has anyone ever considered homeopathic medicine for supplements or vitamins to help with symptoms? If so, what were the outcomes?

Hi Everyone! I am a 27 year old newly diagnosed NMO patient, new to the site. After about two months of testing and MRI's and blood tests, I have been diagnosed with NMO. I have so many questions, and so many thoughts, I am hoping some of you can shed light for me. Currently, I have blurred vision in my right eye and periodic numbness in my arms and most recently my legs and a positive blood test for NMO. Other than that, all tests/MRI's are showing no lesions or compressions, and for the most part an all around healthy person. My vision loss started May 28, and still has not returned. My Neurologist that just diagnosed me on Monday, prescribed me CellCept. I am extremely skeptical about taking this medicine as there are so many bad things I am reading about it. I have not started it yet, and have an appointment at the University of Chicago August 16 to meet with a doctor who is listed on the clinicians on the site. Also, I will be going to Mayo in Minnesota for another opinion.

I would love to hear from you, and maybe you can help ease my husband and my thoughts. Since I am still fairly young, my husband and I are so scared about taking the medicine when I haven't had children yet. We are scared that this will affect the child in some way shape or form down the road...But then if I don't take it, what will happen to me? Or do I have a baby before my symptoms become more severe like some of you? I know this sounds crazy and I should only be worrying about my health, but maybe some of you women might understand my fears about carrying a child and having this disease? I would love to hear stories, or any advice or anything anyone can give me to inform me how this has affected their lives, especially with your families. I am very calm about it and my family is calm and rational, but I fear my husband is thinking the worst and I need ways to reassure him we are going to be ok! I was told to live a normal life and I plan on doing just that, but I don't know enough about this to ease everyone's mind.

Please help me! (And nice "meeting" you all!)
Jenny