Neurologist says I need an MRI of my brain and more nerve conduction studies.

Well, this may just verify lupus for good, if nothing shows up on the MRI. The judge doubts it, although my rheumatologist says that lupus is the most likely candidate for my positive ANA titer, plus some of my other symptoms. If it does, well, all I can do is my best, right? I'm just concerned about stroke or even MS. Cancer is always a possibility, too. That's what is frightening me the most, that it may be cancer. I had a brain scan when I was in my early twenties because of all the headaches I was always getting. They saw that they called a "lesion" on my right temporal lobe but did no more except try to control these headaches with some awful medications. I was the guinea pig. Some made me lose my memory completely, one made me hallucinate, one I called the "itchy pill" because it made me itch from head to toe, one made different parts of my body go completely numb at different times. I don't EVER want to go through all that again! I'm just so tired of all these things happening. I want a nice, calm, peaceful life. Some worrying is fine because we can't escape all of it unless we're in a coma or something. But, at least my son is over for the day and he's going to help me take care of some things that my husband promised to but never got around to doing. Bless his heart! I'm not scared of the nerve conduction studies, since I had one on my right arm already. Plus, the second neurologist said that he's pretty sure I have carpal tunnel syndrome in my left wrist as well so that won't be a surprise. I'll just try to take one day at a time now.

My rheumatologist has already suggested lupus as the culprit for my positive ANA titer. The RA factor was negative, so that's why she said it's probably lupus. I have a few other signs that it is lupus as well, but I'd hate to find out it's lupus causing my nerve damage... that means that it's kicking up its heels and I don't like that thought much. Yeah, lupus can kill. Of course, it could simply be the fibro causing the positive ANA titer and all the other symptoms could be caused by something else, like some medication I'm on. I think this neurologist will get to the bottom of everything, although I'm really worried about where that bottom lies. I'll try not to worry, because I've lived the last half of my 57 years NOT worrying about things I have no control over. It's just a little bit different when it refers to health. I've just has so many things be diagnosed in me lately... that's what's causing my stress. Luckily, though, the MRI is scheduled for next Friday and the nerve conduction studies are scheduled for this coming Monday, Tuesday and Wednesday. So, I should have an answer relatively soon; THEN I can stop worrying and deal with whatever it is.

you have to understand - I have lived most of my life knowing the lady that lived the longest with lupus, so I've know about lupus since I was about 5 - needless to say, knowing that Evelyn was dying all my life (and she survived about 50 years with it) gave me a real fear of the disease

Yes! Whatever they find, it's much better knowing about than wondering and worrying about. If they find the cause of what's going on, at least I'll know if it can be treated or what I have to do in order to live my life to the fullest in spite of it. It'll help me to know my limits, too. I don't want to be pushing myself if doing that is hurting me. I also don't want to be driving anymore if it turns out that I shouldn't be. I MIGHT also make my husband see just how badly he's been treating me and that he needs to understand just how much help I really do need. I haven't been asking him to do too much for me since he's still just getting used to this new job of his, which is much more physical than he's used to but he's not all that keen on me having my sons come over to help me. I don't understand him unless it's pure selfishness on his part and that's gonna stop in the very near future because he's just not going to have a say in the matter if they find something wrong like MS or a stroke or something. I just wish my PCP had sent me to a neurologist much sooner than he did! It was my rheumatologist who initially sent me for the nerve conduction study. My PCP only ordered these examinations from a neurologist because he got a copy of the NCS results as well. Well, at least something IS being done and, hopefully, I can lump a bunch of these things they're telling me is wrong with me together under one cause. At least then, I'll be able to formulate a plan to either feel better or at least to know my limitations. It's just waiting and not knowing that's so hard and scary.

My symptoms are "rubbery" legs, weakness in both arms, extreme headaches (including migraines) and dizzy spells. I know what it sounds like: Multiple Sclerosis. Nothing would scare me or surprise me at this point. I like to know what's being thrown at me, so I did a search after putting in all the symptoms and MS came up every time. A few other things came up as well, but MS was definitely foremost on the list. You couldn't scare me. Even if they find I have a brain tumor, at least I'll know what's causing my symptoms and not just wandering around in the unknown. What was your diagnosis? I'm sorry for you because, since you don't want to scare me by telling me what they found in your brain it must be bad. But please do tell. It won't scare me. The more information I have when they tell me what's causing these symptoms, the easier it will be when they tell me.

well, you certainly do have a good outlook about life, and that is a very good starting point. If it is indeed MS, which to me sounds like familiar signs and symptoms, but i'm not a doctor.. there are a lot of new medications that they have been starting to use i hear that help stop any farther damage to your body.. which means plateau for most.. and that is much much better then nothing!! I hope that you are diagnosed with someone very easy to treat and you start to feel better. You will have to let us know what happens with your tests. i will friend request you. please accept, but know that i come and go from mylot often, but of course i always come back.. even if its been months since i've been here.. ;)

My primary care physician said I have "crystals" in my middle ear. I have no idea what he meant by that, nor how he could tell. He did an eye test of sorts by telling me to hold my head still but follow his finger with my eyes. He said that, when my eyes went into the peripheral vision area, they began to "jump" which indicated something but I have no clue as to how he could tell about crystals in my middle ear from that! He wants to send me to an ear, nose and throat specialist. I think the neurologist will give me a better idea of what's going on, though. I haven't had any blackouts, but definitely have dizzy spells and migraine headaches. The waiting is what's killing me! I'm not thinking "brain tumor" but I do know a few of the possible causes of my problems from doing some research. It's a wait and see game now and I'm not very patient. LOL

Thank you so much, Cats! Hopefully, the neurologist will get to the bottom of all this poop I've been going through. I just wish I had more energy! My energy level has pretty much bottomed out. I went with my son to the grocery store yesterday and only bought a few things but, when I got back I was ready for a nap! All I can say is that I hope they can find the cause of all these newer symptoms (extreme fatigue, dizziness, bad headaches and weak legs and arms). If it turns out to be MS, I know there are treatments to make the symptoms less severe so I'm not afraid of hearing that. It's the waiting that's killing me and allowing my mind to conjure up all kinds of possible causes. Thankfully, it's only 5 more days now until the MRI, and it's going to be in one of those 'open' MRI machines, so it won't be that bad. Thank you again, Cats, for your well wishes. If I start freaking out or anthing, I'll write you an email. Thank you for caring so much. You're the best!!!

I read your first response--it's so great to know that my prayers were answered about your SUV! Maybe he didn't damage it as much as you thought. Get it to the mechanic and he can probably save it. You are so blessed to have a son like that!

Funny you should say that! The report from my first nerve conduction study, done on my right arm, says "Chronic mild-to-moderate right median neuropathy at the wrist", and "Chronic mild-to-moderate sensorimotor polyneuropathy that is predominantly axonal." Now, about polyneuritis, it sounds like the same thing, to me anyway. I guess I'll know better once all these tests are completed. The MRI is scheduled for a week from today, and the nerve conduction studies are scheduled for this coming Monday, Tuesday and Wednesday. Hopefully, I can find some time in-between all these to have my bloodwork done! (It has to be fasting blood... I hate them! My tummy growls every time I have to get them done.) The neurologist yesterday did a "cold" test on my hands and feet. I didn't feel the cold on my feet, but felt it mid-way up my shins. I felt cold only on half of each hand. I used to joke about my feet. Around 10 years ago, I noticed that my feet didn't cooperate with me when I first got out of bed, at least that's when I noticed it more. "My feet don't work." But, I just laughed about it. It might just have been the beginnings of whatever it is I have. Now, finding the cause is something else. I can only hope that, once a cause is found, it's a common cause for most of these symptoms and has some kind of treatment, even if there is no cure. I've most definitely had enough of this!!! I was always such an active person. I just wish I could be half as active again. Now, I'm going to have to look up Guillain-Barre Snyndrome. I'd rather have them tell me it's not that, but if it is, I don't want to be shocked when they tell me. I like to see what's being thrown at me! Thank you for all the great information! You're awesome!!!

Yeah, I hate blood-fasting too. The last time I did that, I think I ate for four days straight without stopping! Hmmm? Then again...I usually eat like that most of the time anyway. (-smile-) Well, whatever it is, I hope that they find out ASAP...and also let's hope that there is a treatment, which will make you better; and two, won't ruin your pocket book before your disability kicks in. Here's pulling for you.... Cheers; cdrxo

Listen, you are very lucky to have your sons at least! Never mind your husband! Do what you need to do for you! I don't think that they will find anything that serious because they would have found it by now! The things you are talking about would have shown up before now! You didn't have a stroke and they would have found MS long before now! Don't worry so much! You will be ok! Like I said, I am here if you want to just vent! Opal2626@yahoo.com Email me anytime! I am here until all hours of the night! Try you get some rest!

Hahaha! That would be something, seeing ME on that show, Mystery Diagnosis. That's one of my favorite shows. I LOVE hearing then end, when they finally get the RIGHT doctors and have the proper tests. Maybe I'll just have to write to the producers of that show about my problem. Hopefully, this MRI will finally give me some answers. That, and the very specific blood work they're going to be doing. I probably should have seen a neurologist a long time ago. It's funny how I finally ended up with this neurologist. It all started with a lump in the palm of my hand, which was diagnosed as Dupuytren's contracture. Something not serious at all but which may require surgery down the road. When my rheumatologist looked at it, she noticed muscle mass loss in that hand and requested the first nerve conduction study. That's what got the ball rolling... a lump in the palm of my hand, of all things! If I hadn't gotten that, all this happening now may never have happened. Now, it's just a matter of hanging on until the test results come in. It's the unknown that scares me. Maybe I've watched too many of those Mystery Diagnosis shows but I can honestly say that I don't see something on TV and imagine that I have that. I have no clue about what's causing my symptoms and I refuse to think it might be something really serious like a brain tumor or something. I have every intention of just waiting to hear what the test results are. Of course, I'll be a bit stressed until I get those reports! Facing the unknown is the worst part. Thank you for your wishes. They really mean a lot to me, knowing that there are so many good, caring people here in mylot.

LOL ... to die laughing would be too cool! They NEVER rule out MS till they call it somethig else *eyeroll* It's a long time things so I don't worry. I will hold on that they move quick for you and it all gets answered in a hurry, they give you a shot, and you're all better. That's the best that can happen so I'll hope for it. And yes you need to wait a while to go anywhere.

Wow! That IS scary, jayrene! I'm so sorry to hear all you've gone through! Wow! They never found the cause of your sudden hearing loss? I'm relieved for you to hear that it wasn't a brain tumor but you still must wonder what caused that. I've never heard of a sudden hearing loss that couldn't be explained after all you've gone through. I guess you're one of those "mystery diagnosis" people. (I watch that show all the time. I'm fascinated by the human body and medical science's inability to find the cause sometimes.) I'm not nearly as afraid of the tests as I am the results. I've had MRI's before, plus one nerve conduction study. I'd rather have the MRI than another nerve conduction study because those things hurt! LOL Well, they're not that bad, but those electric zolts aren't much fun. I am very happy to finally be going to the proper doctor who, hopefully, will be able to tell me what's going on with my body once and for all. At the same time, I'm very frightened at what I may hear! I've looked up my symptoms on the internet and stroke and multiple sclerosis are big on the list of possibilities. But, at least by knowing what's causing my symptoms (hopefully) I'll get the proper treatment for whatever it is. Or, if there is no treatment, at least I'll know what I can and cannot do. I tend to push myself a lot because I just don't want to give in to these problems. Maybe I shouldn't be pushing myself and doing more harm than good by doing so. At least I'll know once the results come in. Thank you so much for your well wishes and sharing your story with me. You hang in there, too!

yeah, it was so sudden, so very sudden in fact, it was like this, i just woke up from a nap, then in a few minutes, my hearing just got fainter and fainter then gone... both ears. doc says its rare and called it sensorineural hearing loss. but you know we go through levels in our life that only God can explain. anyway, what you are doing is right, it is better to go take those tests and know for certain what is really wrong with our body, to be able to get the right and proper treatment. i've known some people that are afraid to go to the doctors because they dont want to know the results or what's wrong with them. they just go on with their lives as if everything is ok... without knowing that they may be doing the wrong thing with their body and making it worst. i have hypothyroidism too and made research on it, now i avoid foods that are not ok for me, which helps a lot. it really helps to know what is going on with our body, bad or good. scary yes, but at least we get to know what have to do after that. God bless... always keep in mind, that there will always be a helping hand available when we go through our hardest times, those hands may never the hands of the people close to us, but they will hold us along the way till we feel better with ourselves and become strong emotionally, mentally, spiritually, and help somebody else in return.

I'm a little concerned that it may be MS. After putting in all my more major symptoms and doing a search, MS did come up as a possible culprit. But, it could be Lupus, too. I'll have to wait and see. I'm not afraid of the actual tests because I've had both before. Even this MRI is going to be in one of those open kinds so I don't feel like a sardine in a can. (I've had 2 MRI's in those big cans... they are HORRIBLE!) They haven't given me a clue as to what it might be. All I know is that I was supposed to see one doctor but ended up seeing two. Maybe they don't want me to worry TOO much by telling me what it might be. I was told I had a possible brain tumor (decades ago) and had to wait two weeks for a brain scan. I honestly thought I was dying! But, it also gave me time to think it through; if I had a brain tumor, I wasn't going to let them operate on my brain. Nope. I think it's much easier on the patients if they're not told what it "might" be because then their imaginations can't run wild, like mine did. Thank you for the well wishes, though. It helps so much to get through trying times when you know there are people who care in the world. MyLot is full of them and I'm so very glad I bumped into it!

Hi, leeni, I've had 28 surgeries myself in my 57 years, but I don't consider mine anywhere near as serious as yours! Well, I did have a tubal pregnancy once that ruptured, giving me peritonitis and an extremely low blood count, but still, that wasn't my heart! Geez! I think I'm just afraid of the unknown. I have no idea what these tests might reveal. I know that once I get a proper diagnosis, I'll be able to tackle it head-on and do whatever it takes to feel as good as possible. Thank you so much for your prayers AND the hugs! I'm really big on hugs; they can do so much! If I can just hold out another week or so, I'll be okay. Even if they tell me it's something serious, something that could kill me, I'll still be able to get started enjoying whatever I can of the life I have left. Well, I typically do that now, but the stress of not knowing, especially when I know that I should have answers very soon, is tending to slow me down a bit. My sons are both such sweethearts! My youngest son is here with me now and will most likely spend the weekend, helping me out. He's been a tremendous help since I picked him up yesterday. A large chunk of my life has sucked, but I did manage to get two of the best sons I could possibly ask for. Also, I know I can come here and find understanding and compassion, not to mention some really good advice. I LOVE this place!!! Well, I love it because of the majority of members here. So many people, like you, are so filled with love and caring... there's no way in the world I'd want to stay away! You guys are my extended family! I wish that, someday, I could invite everyone I've met here who have shown me such caring to come spend a week or so at my house... one big myLot's extended family reunion. Okay, 'union' since there's never actully been one before. But, even though I know that's impossible, coming here every day has helped me in more ways than I could express here. Thank you so much, leenie.

Well, I kinda hope something IS wrong, something that will explain my symptoms: weakness, headaches and dizziness. If they are able to pinpoint what is causing these symptoms, I can adjust my life accordingly. Maybe I shouldn't be driving. That's something I'd like to know. Maybe I shouldn't be pushing myself so much. I'm a stubborn gal sometimes and have refused to give in. I even had a broken toe once and would NOT use those electric carts at the grocery stores. I just leaned on the handle of the cart after putting my crutches in it and hobbled along. That's pretty much how I do grocery shopping these days, too, only I don't have crutches to put in the cart. LOL Knowing what's wrong with me has a good side and a bad side. I mean, if I find out I have multiple sclerosis or something, I can take meds to counter the symptoms to some extent. But it could be that I've had a stroke or something else that I just have to learn to live with the symptoms and adjust my life accordingly. I'd love to go in there thinking nothing is wrong, but something is definitely wrong. Hopefully, I'll know what it is after these tests. I'm just worrying now because so much has gone wrong or broken down with my body in my lifetime. I've had 28 surgeries already for various things. I'd LOVE it if they told me I could have a full-body transplant! LOL

Thank you, nzldzh. I'm not entirely sure I understand what you're trying to say here, but I think you're saying that I have to get as much information as I can, then decide from there how to go about working around it. I've always been a very active person and this has really put a damper on my abilities. I push myself now because I don't like giving in to things like this. Maybe that has something to do with the fact that both my father and sister had muscular dystrophy and I saw them go downhill, healthwise, very rapidly once they were in wheelchairs. Who knows? I may have another form of muscular dystrophy. My father and sister both had an inherited form. I was very fortunate not to get that. But, my symptoms could be caused by a lot of different things and I won't know what they are until after these tests are completed. It's just the waiting and not knowing that scares me. Once they tell me what they find, or don't find, I'll be able to adjust my life in order to make the most of it, no matter what.

Thank you, crystal. I hope so, too! I'm happy to finally be getting the proper tests done to get to the bottom of all my problems, or most of them, anyway. Maybe soon I can get the proper treatment! At the least, I'll know what I can and cannot do from now on and won't try to push myself if I know I shouldn't.