Hi Jen1984, thank you so much for your post and kind words! It is indeed frustrating not knowing what is going on with your body and struggling to find someone to believe you (i.e. a doctor). Fortunately, this new doctor is really good and is listening to me! I will look into the Chiari Formation, somebody else posted something about it on here or somewhere else and I meant to look it up but never did, so thanks for that tip!
MSNik: I just want to thank you for your continuing support, advice, and level-headedness. I appreciate it very much and reading your posts in the archives, it is clear that you care about people and I'm sure you're getting lots of good "karma" for helping out people here, especially newbies in limboland like me
So, here's my update:
I went to see the new doctor today. He is really great. I think the thing on the phone yesterday was just one of his receptionists being weird lol. Although, everybody I've met at the clinic is really nice, which is unusual for a walk-in clinic in my experience Anyways, I did tell him about my episode a year ago and my suspicions of MS and he did take me seriously. I brought the paperwork for the private MRI and he agreed to fill it out so I can get my brain checked and he talked about referring me to a neurologist. He also signed some papers for school so I can drop my courses (get an "aegrotat" on my record) as I've missed a lot of school and finding it hard to concentrate for long periods and read the fine print. [Just as a side note, I already have my degree, I just took some courses this year for "fun" and personal development because of the economy and this way, I was keeping busy, keeping my mind active, socializing, getting student loan funds, and getting cheap medical insurance through school. I didn't have intentions of taking more semesters of school from the beginning (other than maybe a part time course in French or something here and there) as we plan on moving back east next year (and I'm supposed to go to Ontario this summer to check out areas we want to live in).]
Oh dear, I'm rambling again. Sorry!
Anywho, my test all came back within parameters other than my B12 which is a little high (but I had just taken a B12 shot a day or so before the test). Here are the results:
Thats Great! Let us know how it goes and insist it be done both Spine and Brain - with and without contrast....otherwise, its a waste of your money.
cant wait to hear your results...
I tried, but they are only doing the brain And no contrast! They said that they will take a couple "shots" of the cspine and if the tech sees anything then they will use contrast. I said to the lady on the phone "But your website lists MS Exam as brain and cspine and I understand that contrast is required to see newer/active lesions" but she said that's what was requested and the tech will make a judgement call depending on what they see. I'm going to bring it up again at the appointment though, if I can. I even pointed it out to my new dr when he filled out the form because he only wrote MRI Brain r/o MS but he didn't add cspine or contrast. What a rigamarole, eh? Well, if there is something there, I hope it shows up easily so that I'm not playing the phantom diagnosis game.
Speak with the tech and they may be more accommodating.
That's a good idea, thank you! I can't wait to get the MRI over with lol.
I'm trying to keep busy and positive; been doing a lot of gardening the past few days, planted a whole bunch of veggies yesterday and today and just sitting in the shade, outside, getting some fresh air.
Hopefully, the MRI will be more or less definitive and they can either say, you very likely have MS or, hopefully, you definitely don't have MS--although I know that it isn't usually very clear-cut like that.
Witty, youll get some answers. Either the lesions will be present, or they wont. Unfortunately, if the symtoms continue and the lesions ARENT there this time, they might be there in 6 weeks or 6 months. Thats the tough part to swallow. Having Contrast is actually the most important when you are trying to find a dx, because really small lesions wont show up without it. Also having both the brain and Cspine for the same reason.....what hides in one area could be very clear in another.
You have to pay for this and you still dont have any say on what or how it gets done? Thats crazy. Im sorry for you. But, I do think youll get some answers. Personally, im always happy just to know my brain is still there! With my doctorate program, Ive used up more then enough brain cells in the past few weeks...im really hoping they regenerate.
Youre in my thoughts. Dont forget to ask for a copy of this test WHILE YOU ARE THERE. They have to burn you a CD or give you films...but whatever you do, please dont try to read them yourself. If you get a report, we can help you with key words, but do not, and I mean it- try to play radiologist. It will only hurt you. I counted over 300 white spots on my first MRI, only to learn they were supposed to be there. In reality I still had over 50 lesions The next time around, I saw black spots, which I swore were "black holes" turns out I was right; but only about 2 of them....the rest were shadows on the films or supposed to be there. And dont get me started on the "grey matter". I learned early, dont try to read your films...
just alittle advice from one who knows.
Hugs to you...stay strong.
Thanks Nikki. My biggest "fear" is that I will actually have MS but not have any objective evidence of it (like plaques on the MRI) and will continue to have strange symptoms off and on and just ignore them because it's "all in my head" because they weren't on the MRI. Does that make sense?
If I have it, I just want it diagnosed. If not, great, I just hope that I'll start feeling better again and can move on.
I agree, it's kind of stupid that I'm paying for the MRI but have no real say in what happens. I'm going to mention the contrast to the tech and see what they say. I'll play dumb if I have to and mention that everywhere I've read that it is necessary to do it with and without contrast in order to get a diagnosis, but they may think they know otherwise. *sigh*. Apparently the MS scan includes "brain and limited c-spine". Oy vey. My mind is spinning right now LOL I'm vascillating between "I have all the symptoms, I definitely have it" to "there's no way I have it, it's just a combination of allergies, stress, and a pinched nerve". So to distract myself, I watched an episode of Judge Judy (I love her) and in the episode there's a lady with MS. DOH! I think the universe is messing with me Oh, I believe they will give me a CD of the MRI when I leave. How on Earth I'll be able to avoid popping it into the computer when I get home is another question LOL But I'll try...
Anywho, whatever happens happens (que sera sera and all that jazz). Can't wait to get this MRI over with, though
Last edited by wittynamehere; 04-15-2010 at 12:51 AM.
So, as I posted in the other MRI thread, I just had my MRI done. Took two sublingual ativans (.5) just to ensure I was relaxed but I'm not claustrophobic (almost the opposite, in fact) and I had a good time--it was like being in a tanning bed slash massage chair LOL
Of course, I couldn't help myself and I peaked at my cd. Doesn't seem to be anything unusual to my untrained eye, but who knows. Unfortunately, they didn't use any contrast which sucks, especially if there would be any new lesions present (which would be given that this set of symptoms have been fairly recent) but whatever. So far, so good. I guess I'll just have to wait and see until next week. At least I know there aren't any obvious issues (like a big tumour or something, although I already knew that wasn't an issue).
The only part that suck if this does come back clear is that I'm either a) totally crazy and everything is in my head, after all LOL, or b) I have something wrong but still no closer to a diagnosis. OR c) I do have MS or something else wrong but it hasn't been picked up on yet and I'll end up with a false negative, which is probably the worst scenario because NOW try and get a doctor to take you seriously. *sigh* Oh, well, I guess I'll know for sure next week.
Wow Witty. Youve about covered all the possiblities, havent you? Im sorry dude- but at least we know you HAVE a brain - right? I think that you will get some answers. You are going to a reputable MS clinic, a decent facility did your films and now if you have any sort of decent doctor to talk to- you should get some answers. Remember no one can force you out the door without answering the question "what next?".
If you dont hear what you expect to hear, then by all means ask what they think you should do next....at least youll leave with a plan.
thanks for the response Well, I don't have any specialist MS or Neuro yet. It was my new clinic dr that ordered the MRI for me. The tech just said that he should get the report early next week and to follow up with him. She did tell me to keep the CD safe in case I need it when visiting a neuro down the road. Of course, I tried to read into what she was saying but she had a good poker face LOL Whatever I have (or don't), at least I'm pretty near positive that it's not a tumour or anything LOL. *knocks on wood, just in case*
I'm glad to have gotten the MRI over with and so quickly so I don't mind waiting a little before hearing back from anybody. Gee, I wonder how much these MRI tech's get paid? It sounds like it would be a fun job and good coin
Anywho, I just might treat myself to a little home spa this weekend if I can make a trip to the Aveda store and pick up a bunch of bath and skin stuff. Mmm.
I'll keep y'all posted (I'm speaking American now lol) when I hear back from the doc. In the meantime, have a great weekend!
Hi Again. My brother is a MRI tech....he makes okay money. It also cost him a bundle to go to school. But thats besides the point. I cant believe you dont have a MS doc reviewing these films. Most GPs cannot read a MRI let alone know what they are looking for to be able to tell you yes or no....the report, which you should get from that doctor, you can post the key points here and we will help you intepret it, but sheesh- a regular doctor sending you to see if you have MS is practically unheard of! Take the techs advice and keep the CD safe- and plan on getting a second opinion with a Neurologist who has MS experience, if not a MS specialist- after you hear what your doctor says.
Take that spa weekend. And pour in an extra capful of something for me!
I know, everything is backwards here. He was going to send me to a neurologist and that's when I demanded the private MRI (I even pre-filled most of the form out for him lol) so maybe he was just trying to appease me. I don't know if he was already going ahead with a neuro referral or if he wanted to wait until we got the report from the Tech for the MRI. Either way, I will ask him for a referral to an MS specialist (we have an MS clinic downtown, thankfully) although just peeking at the pictures (and I'm just a layman), I really don't see anything remotely unusual but it's possible that there are small/subtle lesions there, or I could be totally healthy and it's all in my head after all LOL.
Maybe I am going crazy...Oh well, at least I got a funky bunch of pic's of my brain to play with. If anything, I might be able to get a free nosejob out of this LMAO.
You cant read that MRi. Ill bet your nose job on it. I saw absolutely nothing wrong with mine and had over 50 lesions. The second time I saw over 200 lesions and found out most of the dark spots were supposed to be there. The next time, I had 20+ holes in my brain and guess what? Some of them actually were black holes- some were shadows on the film. Betting you have no idea what you are looking at!
Techs dont read films either. All they do is set up the machine and run the scans...a Radiologist (you know the guy with 12 years of school and a M.D. behind his name) he will read it and send a report to your doctor. I just hope he is a good one. Not all Radiologists are created equally.
In the case of a Neuro- they can also read MRIs. For instance, my Neuro never reads the radiologists report until after he forms his own opinion. 99% of the time he is correct and the radiologist concurs with him. ONCE my doctor picked up something which the radiologist has listed as "no change from last report". There was a change and it was important, so this radiologist made a mistake.
Keep the faith. Go Relax. And, let us know what happens.
Hee, you're totally right. I'm like, is that tiny black hole supposed to be there or is it dead space? Is that slightly lighter tiiiny blog a lesion or just normal white matter? I'm gonna stop playing radiologist. BUT the cool thing was that I found some fun, free mac software to play with the images and it was able to make a 3D model of my face by compiling the scans, how cool is that? And it was able to recreate my brain but I don't know how to remove the bone layers completely so I can see just the brain. As you can see, I'm just playing around with it. I dunno, I guess the staying in awe of nature/eager 'med student' mentality helps keep me occupied and interested rather than scared. I'm sure it's totally clear but if not, I can handle it.
Come to think of it, I think the tech did mention a "rad" so that must have been what she meant, of course, that a radiologist would do up the report. That makes much more sense. You're right though, it must be a really fine art to read these things and be able to tell what is "good" from what is "bad". It's not all that obvious. At least I know I don't have any huge megablastomas (or whatever). And my ventricles are fairly small--gotta pack in all that massive brain in there somehow LOL Also, I like spotting shapes in my brain like clouds (ooh, that's an angry camel and that's a dove fighting a ram). Geez, I need to find something more productive to do but I cannot stand the idea of cleaning my room, I'll do anything to avoid it
Alright, time to do something useful.
Thanks again Nikki, as always love to hear from ya