I've had two doctors suggest MS to me. One was a internal medical doctor I had seen a few years ago. Then the neuro I'm seeing now has been thinking MS yet when he ordered a new MRI this past month it came back with no lesions.

THO I have to have a talk with this hospital because they said on the report they had NOTHING to compare it to when I have had 1 or 2 other MRI's done there in the past 2-3 years. I HAVE copies of those FILMS AND they DID have lesions on them. I also have copies of films done June of last yr at UCDavis and it had at least 3 lesions on those films. I want to make sure they read the right films and sent the right report of the right person to the neuro.

I have the bladder/bowel problems, right sided weakness, balance problems, use a walker or powerchair for walking, headaches, vision problems, neuropathy, fatigue, lack of sensation in right side mostly. memory problems and other stuff.. I cant think of... Now we think Im also having seizures.

But because this MRI says nothing on it.. He isnt sure what to think now. He wanted me to fax him the reports of the other MRI's. Tho no one has done a lumbar puncture.
GM

This hasn't been the first article I've read about the uncertainty of MRIs when diagnosing MS. I don't think for one minute it's propaganda but simply scientific fact.

Harry

I think what Pat said is only a slight exaggeration. It's just PR, just the party line.

I laugh too. Diagnosis and treatment often don't come until the symptoms and/or test findings are extremely obvious (if then), although many (or most) doctors no doubt try to treat serious symptoms that are affecting the patient's life.

It's telling that after six years of experience with doctors (previously I hardly ever saw them), I was very surprised when my new PCP (my fourth in six years) actually took the initiative to follow up on my cholesterol and blood pressure. All three previous PCPs had talked at the first appointment, said we will follow up, but never brought them up again.

Even such common, important, and perfectly objectively diagnosable problems as blood pressure and cholesterol can get ignored! So why not other diseases?

Nancy

I was DX pre-MRIs, by a process of elimination. One hospital stay of a week, with all the blood tests you can imagine and a Myleogram, which showed the telltale protien and O-bands (and no tumour).

I didn't have a MRI, until I was re-DX, after a long remission, 18 years later. My Neuro at the time said that my MRI looked typically MSessy. I had one more MRI 4 yrs later, that read the same.

You don't need a MRI to DX MS. It's just one of the many tools Docs use in the DX process. Like all tests, if not done under the right circumstances with a knowledgable Doc/Scientist, to read the results, then it could have been a waste of time and money.

I refuse MRIs for MS now as they are unnecessary, once you have been DX. Any MRIs after that are for the Doc's curiosity and of no help to you. IMHO!

Same here Sally, well sort of. The MRI was very new, there were 2 MRIs in the entire state. I had a brain MRI without contrast - contrast wasn't even used at that time, it was clear. I did not have a spine MRI.

I had a LP (positive for o-bands) and right after the LP was a Myleogram (negative), bloodwork, VEP, and x-rays.

I was dx'd based on the positive LP, symptoms and neuro exam.

I think there is too much emphasis placed on the MRI when many were dx'd with MS before the MRI came on the scene.

BTW - My diagnosis has never been in dispute.

It all sounds very familiar cricket. Yep it's pretty scary having multiple neurological symptoms but no definite diagnosis.

This makes so much sense Sally! Especially since MRI's and brain lesions are absolutely NOT indicative of the disease progression. Although it seems some do use MRI's as a way to see if their meds are working. I had no lesions 2 years ago when I had an MRI done. I think when that MRI came back negative, and the LP showed no O-bands, that was when the neuro dismissed me.

Aren't O-bands released episodically? Like when the myelin is actually being destroyed?

I want to say yes but I'm not sure.

I was having an exacerbation when I had my LP. My neuro said my LP might have come out negative had I not been in an exacerbation

There are probably a lot of people who would have been considered really clear-cut cases of MS before there started to be so much emphasis on MRI, but they are now either limbolanders or "sort of limbolanders" like me. I've been told that there would have JUST BEEN NO QUESTION about my diagnosis back before doctors started relying so heavilly on MRI as they do now.

Perhaps we need to go back to the "drop us in a hot bath" method (or even just stick us in the sun for too long)?

It would certainly be sure indication for me, but then again, so would exposure to the cold!

It is my understanding that there are generally more O-bands showing when we are in a relapse.

Cherie