marion06095
06-13-2005, 07:35 PM
I had a clearly positive MRI. Is it possible that I'll have a negative spinal tap (scheduled for this Friday)? If I do have a negativce spinal tap, does that rule out MS?
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dje27
06-13-2005, 09:32 PM
Im in the same situation. Nine lesions on brain MRI but had a negative spinal tap. I do have some symptoms, the neur told me he is going to do a follow up MRI in a year. I guess it takes a while to confirm MS.
marion06095
06-13-2005, 10:01 PM
A YEAR?!?!?!? Good grief! I'm not sure I could stand the suspense for a year!
lilc
06-13-2005, 10:33 PM
Marion, I'd encourage you to read back through the older posts to this board, and to do additional research. It seems clear to me that a definitive diagnosis is elusive, and yes, it takes some time. I've been working on a dx for only 3 months, I expect to have several more months of anxiety and (unpleasant) tests before I really know what is going on. But I'm quite sure I've read that a positive or negative MRI or lumbar puncture in and of itself is not necessarily conclusive. It seems that anything related to the central nervous system involves some degree of sleuthing, and I'm getting the impression that the nature of your neurologist plays a major part in how long it takes to get an answer.
Personally, when I consider my past and present bad habits and my current symptoms I haven't found anything LESS devastating than MS to blame it on...I have also searched on other disorders that may be causing my symptoms (like Lupus, Lyme and fibromyalgia) and have found that they don't fit at all, but MS fits best. It isn't that I WANT to have MS - I just don't want to have something that is certainly terminal...
Look on the bright side, a year of interesting tests and information about your "innards" will probably fly by, and you will be better equipped to maintain your health when it is over! By the way, what symptoms do you have?
Personally, when I consider my past and present bad habits and my current symptoms I haven't found anything LESS devastating than MS to blame it on...I have also searched on other disorders that may be causing my symptoms (like Lupus, Lyme and fibromyalgia) and have found that they don't fit at all, but MS fits best. It isn't that I WANT to have MS - I just don't want to have something that is certainly terminal...
Look on the bright side, a year of interesting tests and information about your "innards" will probably fly by, and you will be better equipped to maintain your health when it is over! By the way, what symptoms do you have?
racefan8
06-13-2005, 10:36 PM
I was in the same situation...positive MRI with 5 lesions, and a negative spinal tap...1st neuro wanted injections, but couldn't explain why...2nd neuro said, "you have MS and injections are a must"...so to answer your question...yes it is possible. Just keep digging until you get answers. Remember the doctor works for you, and you can always go to another one!! I chose Avonex...I am having a rough time with self injecting, but I have a co-worker that gives me my injection!! My follow up MRI is in 6 months to a year. Depending on how everything is going at the time. Good luck!!
KelliD
06-13-2005, 10:46 PM
Hi Marion! All of my doctors told me that an MS dx is done by process of elimination. That's part of the reason it can take so long to get a dx. Even when I got mine, my neuro warned it was not "definitive" but that all signs pointed "toward" MS and that is what he would be treating me for. I like my Neuro..and understand that the other part of the waiting was HIS having to wait for those who would administer the tests to get me worked into their schedules. Don't lose heart! Hang in there!!
dje27
06-13-2005, 11:38 PM
racefan......I have been reading things like active and inactive lesions. I have 9 lesions in the periventricular white matter. Suggestive to MS. Negatiave LP. what does active lesions look like compared to inactive?? So many things to ask.!!!!!!
marion06095
06-14-2005, 09:23 AM
Wow! Thanks, everyone! Great input!
:)
:)
Lisa_P
06-14-2005, 04:06 PM
Right now, with just the MRI, you're probably diagnosed as "Possible MS," yes? Even if the Lumbar Puncture is positive, that won't change the dx. They don't want to say "Probable MS" until there are at least three factors that indicate it. As well, the only time I know of that "definite MS" is declared is after there are no other explanations and you have had at least two exacerbations...
MS is a diagnosis of default.
MS is a diagnosis of default.
marion06095
06-14-2005, 05:31 PM
Well, actually I may have had a head start in the diagnosis process. I have been aggressively pursuing a diagnosis for five years, so I think many tests had already been done to rule out lots of possibilities. I have gone through four primary care physicians, and three neurologists with no success, even though I have had to walk with a rolling walker for the last four years. Finally, in January, I gave up. I decided I wasn’t going to subject myself to such frustration any more. I did continue to go to my eye doctor because I have glaucoma. This doctor had poo-pooed my complaints several times about a visual disturbance in the center of my left field of vision. He told me that my eye looked perfectly healthy other than the glaucoma, and “I wouldn’t worry about it if I were you”. When a blind spot appeared in the middle of this visual disturbance, I got tough. Finally, I told him that I was losing sight, and if he couldn’t figure out what was wrong, to give me a referral to someone who could. He grudgingly sent me to a retina specialist, who sent me to a neurologist who is also an eye doctor. He’s the one who ordered the MRI. It’s funny. All those years of being made to feel like a malingerer by all those doctors, and now all of a sudden one of them has noticed … “hey, I think she might really be sick.” Oh, the irony! I was completely bowled over when he said MS. At 58, I thought I was too old to be diagnosed with that. Now I find out that it isn’t very uncommon to be diagnosed this late in life.
This message board is wonderful! You folks really do know your stuff. By reading this board, and reading elsewhere, I now believe that I have been symptomatic for over 10 years. I’ve had numbness over different sections of my body, radiating pain down my left leg, and several instances of losing my balance and falling. Even with a walker, I still walk like a drunk.
I didn’t mean to go on so. I’ll be relieved if I don’t have MS, but the more I read, the more I think I do.
This message board is wonderful! You folks really do know your stuff. By reading this board, and reading elsewhere, I now believe that I have been symptomatic for over 10 years. I’ve had numbness over different sections of my body, radiating pain down my left leg, and several instances of losing my balance and falling. Even with a walker, I still walk like a drunk.
I didn’t mean to go on so. I’ll be relieved if I don’t have MS, but the more I read, the more I think I do.
angelinfla
06-17-2005, 01:38 PM
My husband's regular doctor ordered all the tests done when my husband was so tired, dizzy, tingling in his calf and pinkies and just feeling not right. That was good, but now we still don't know what is going on. The MRI shows 4 areas in the white matter, but the LP was negative. His sister has had MS for 14 years. He said that he may have to keel over before they'll find something. He is getting depressed. It's not like he wants to be dx'd with MS, but if it is, then tell him what to do about it. If it isn't, then tell him what is wrong. It is sooooooo frustrating. We are now waiting for an MRI of his neck to be read. If that doesn't show anything, I am going to get him to another neurologist for a second opinion. Seems that MS is hard to actually diagnose, and waiting isn't easy if it's happening to you.
kchs1
06-17-2005, 04:16 PM
I Keep On Looking At So Many Of Your Quotes Here And I Just Keep On Being Baffled And Amazed By The Length Of Suspense That Some Of U Go Through. I Guess My Symptoms Were So Strong And Severe That They Knew Right Away.
I Dont Know What Meds I'll Be On Yet, My Neuro Says It Might Be Rebif.
Kchs1
I Dont Know What Meds I'll Be On Yet, My Neuro Says It Might Be Rebif.
Kchs1

