I am so sorry for your sadness. I can understand the confusion. I guess you are diagnosed?? Thanks for the update on the test.
Elaine
Hi Everyone
I gave the best info I had been given but my neuro told me the wrong name for this test
It was an MRI Spectroscopy. It measures different chemicals in the brain tissue ( white matter) and the lesions . They use the result to tell where one is at in development , how old, if meds are indicated, if the meds are working , whether to change doses etc.. much more It is mainly looking a NAA ?? and others w/ratios but my eyesight is screwy , so I 'm having a hard time reading right now, so I can't see the pages of my test. If I can ever figure out how , I will post one for you.
I met this neuro yesterday , MS specialist . He was very thorough, kind of hedging a bit , not wanting to step on toes but the bottom line , even if this ' cutting edge" test does not show evidence of ms for me ( ' it's not the final word ' ) , he would not hesitate to dx. me and put me on dmd 's immediately. He's writing my neuro to give him his opinion . So, I'm not sure, did I just got dx.d or not . ???? :) :)
He likes copaxone and is gearing his research mainly with it .. Some guy is coming down from N.Y. for the summer and three or four of them are writing a paper on this . Its not being done in many places( mainly research) but he thinks it will be one of the next big things in helping with ms tx and monitoring . There is a place in Boston that's doing them too..
I found a couple of petty good sites this afternoon , if any one is interested. As you can imagine I'm feeling rather low .. ( he saw even more lesions than the other two guys and radiologist . ) I'm so sad .. maybe I'll have more to say tomorrow .
I wish I could tell you this better but I'm not too clear right now
Signing off Jo
Hi all
at first I thought this test was like a MRI just more "specialized", looking at the myelin closer, but after the phone call saying it will be looking for a chemical , ( not cholesterol) I don't have the foggiest . I don't think it is a blood test though. He did say it would be definitive, but I've heard that before.
This guy is trying so I'll stay with him for awhile.
I will surely keep everyone informed. I will be calling doc's office tomorrow so maybe they will know something more
Thanks
Jo
The only NMR test I have seen as it relates to medicine is NMR for particle size of cholesterol. Beyond the regular blood levels of cholesterol, there are large and small particle sizes.
So the NMR will tell you if you have predominantly small sized cholesterol particles in the blood (making you more susceptible to stroke) or if you have the more harmless larger particle size.
Please keep us informed if there is a NMR test for MS. Since Craig is a research scientist, he would be jumping right on it too!!!!
The only lab that does this test is Labcorp. Quest is supposed to draw it and send it to Labcorp but that just doesn't happen in Delaware.
Elaine
Wonko is right they can use these with an MS (mass spect) attached. In all honesty, I have not heard of anyone having a test like this. I do not know if it is widely done at all. I am not in the medical field so I do not know whether or if NMR has medical applications. Maybe you could ask Quix on that.
Also, I to am a limbolander and not diagnosed. I wanted to encourage you to get a second opinion. I understand not wanting to go to doctors and not wanting an answer, but you need one. I need one. It effects our daily lives and only we know what is going on. You know your body better than anyone else. Trust yourself. I would definetely try for a second opinion from another doctor.
Tahiri
Hi,
I am also a chemist, and I have a comment: NMR is often used in conjunction with another technique, mass spectrometry (or MS), to identify a chemical unknown. NMR can tell you what type of functional groups are present, MS can tell you the mass of the unknown, or the mass of its fragments. So in this case, the "ms" in NMR-MS may not be what you think. Of course I'm not sure since I don't know exactly what your doc was talking about! Nor am I a spectroscopist. So take anything I say with a grain or two of salt.
NMR spectroscopy pre-dates MRIs, but MRI's use principles of NMR. I'm not sure if I can post links here, but http://focus.aps.org/story/v18/st18 discusses this, without any equations!
Whatever test they are doing, good luck and keep us posted!
Thanks for the laugh Ess , your description of the toon was pretty much like mine when writing it but hanging on to something ( cactus ) for dear life, Yours made me laugh , new slant .... do you remember the roadrunner , beep beep and the poor coyote... :)
I 'm thinking , this would have been all ok two months age before the nystagmus , I feel it now and people ( doc.s ) can see it. Almost everything else had been sensory but this is a direct link. My eye gets worse every day and that's the good one , the other has a cataract , which developed in 2-3 mon.
Oh ya , since my parathyroid surgery , my calcium and PTH were suppose to go down , well they're both still as high as ever ??? Something is not right
Thanks CJ for your comment .. It means so much to have friends.
I'm a wreck today , so sorry.. Maybe its a stay in , movie day
Thanks you guys
HUGS Jo
hey there hunny ,hang in there we are all with you on what you feel
hugs
CJ
I have to leave all the chemical explanations to Tahiri. It's a sealed book to me too, but if it turns out to have big implications in MS diagnosis, I'm sure we all want to hear more.
At the moment, though, you are dealing with something else more immediate---your own very natural feelings as things finally start rolling. You're having that, "Hey, wait a minute!" moment (or hour or day or week). You feel like a cartoon character slanting backwards, arms outstretched, heels dug in, trying to stop whatever it is that's coming, with your eyebrows up in your hair and a frantic expression on your face.
I know this because I've been there, and so have loads of others here! It's a huge adjustment. We wait seemingly forever for some doctor or a series of doctors to take us seriously, and when they finally do, Holy Mackerel. Please Mister Custer, I Don' Wanna Go! (Forward, Ho!)
The upside of this is that it's very very normal, and it will pass. Just give yourself time. It all doesn't have to be digested at once. Just get the remaining test or tests and let things happen as they will. You will come out the other side, believe me. Limboland has its own strange security, but it isn't even a nice place to visit, let alone a place to live.
You will be glad of a diagnosis, but not not today. So just keep hanging out here with all your friends. Chin up!
ess
Thanks Tahiri
Have you heard of anyone having one . Are they accurate ? are they very newest in ms detection??? There appears to be only one guy around here who does them , he's in Naples 2 1/2 hrs away ..... I'm wondering is this the newest in the detection of ms ?Why aren't more tested this way if its so definitive?
Thanks very much for your time and concern and help
JO
PS Now that this is creeping up on me , I'm starting to freak me a little.. I DO NOT WANT THIS TO BE REAL ! ! ! I want to dig my heals in and tell everyone ' WAIT .. WAIT .. I thought I was ready but I'm not .. Can we please slow down,,, please .. my heart is breaking ... I'm not ready No one hears or sees and its full steam ahead
Choo Choo
My understanding is that you only have to have two documented attacks and 2 lesions in order to be diagnosed (right, Quix?). I would try seeing another neurologist for a second opinion, or better yet an MS specialist.
Also I am a chemist. NMR can be used to detect multiple elements, but most commonly carbon and hydrogen. They can inject samples into the NMR and know what is most likely attached to each carbon or in proton NMR how many different protons there are. This is done by reading the chemical shifts. I know I am probably really confusing.
EG:
For example, for the 1H-NMR spectrum for ethanol (CH3CH2OH), one would expect three specific signals at three specific chemical shifts: one for the CH3 group, one for the CH2 group and one for the OH group. A typical CH3 group has a shift around 1 ppm, a CH2 attached to an OH has a shift of around 4 ppm and an OH has a shift around 2–3 ppm depending on the solvent used.
If they know what they are looking for they can take the information from the NMR and see if it fits the chemical they are looking for. Let me know if that helps.
Tahiri
PS I am not really all here right now so it is okay if you do not get it.