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Old 10-03-2006, 07:38 PM #1
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cricket,

They can give a clinical diagnosis in someone who has no lesions on MRI. I have been told that I fulfill the clinical criteria for definite MS.

A clinical diagnosis can be established if their is evidence for lesions disseminated in space and time. They tend to rely heavilly on things that aren't fakeable. They worry way too much about people faking symptoms.

My eyes, for example, show clinical evidence of lesions disseminated in space and time. I developed optic disc pallor a number of years after I developed an eye-traction problem (bilateral INO). The optic disc pallor indicates an optic nerve lesion. The eye traction indicates a brainstem lesion. So, there are lesions in two different locations, and they happened at different times.

There is a lot of caution out there against giving a definite diagnosis to someone in whom all of the tests have been negative. It's really up to the doctor what tests they need to show positive for a definite diagnosis if the person has shown clinical evidence of lesions disseminated in space and time.
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Old 10-03-2006, 11:26 PM #2
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There seems to be such conflict between giving an early diagnosis and doing the 'watching and waiting' thing to see what develops. It really seems to be random who gets the diagnosis and who has to wait. This might be why people neuro-shop because we hear stories of people waiting a loooong time without any diagnosis whereas others with seemingly identical circumstances get one right away. Just different doctors, that's the only difference.

Here is the full BMJ article that Cherie's article stems from.

http://bmj.bmjjournals.com/cgi/conte...urcetype=HWCIT
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Old 10-04-2006, 12:27 AM #3
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What wannabe said. It seems so arbitrary.

Is a poor patient to believe the "Early Diagnosis and Treatment" mantra you hear almost everywhere in MS Officialdom?

Or is the poor patient to believe the conflicting, seemingly arbitrary, blase, AND/OR dismissive attitudes of many doctors toward those without MRI evidence that screams MS?

(Picture the neurologist leaving the room making the Valley Girl "W" sign... "Whatever!")

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Old 10-04-2006, 05:58 AM #4
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Early DX and TX, I laugh when I hear those words in reference to any disease. That is what is promoted by hospitals and insurance, but they don't practice it, it's just a media thing.

I've had MRI's showing multiple lesions and progression, and many tests that show some sort of abnormalities, but since I don't show "O" bands I'm dismissed and told I am healthy.

When I stumble, have to push myself to walk a block and have to think about every step I take, and my legs twitch and spasm all day long, well all I can do is shake my head.

Something is wrong, hopefully the Cleveland clinic will be willing to figure out what is wrong.
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Old 10-04-2006, 08:39 AM #5
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Matt:

I had to look up INO.

The only eye problems I have is jerkiness of pursuit. Police officers watch for that when they test drunk drivers. I don't drink. I have oscillopsia, double and blurred vision. My optic discs are perfect. Neurogenic bladder, bowel motility problems, spasticity, clonus, slight loss of sensation, fatigue, wide gait, can't do tandem walk, use a cane for distances, ocassional weakness, brain atrophy, normal EVP's - which all add up on clinical exam to soft neurological signs. Yep - great MS mimicker. No lesions. When my leg reflexes tested 4+ I got considerable enjoyment from the look on my PCP's face.

Quality of life seems to be the goal for those with early symptoms. Pain management shouldn't be ignored. In the end, you cannot replace a good MS specialist vs. a 'normal' neuro. Well, at least that is my experience and story and I'm stickin to it.


Whatever happened to that promising blood test for MS? It seems to have disappeared from the literature.
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Old 10-04-2006, 09:14 AM #6
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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.
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Old 10-04-2006, 01:47 PM #7
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It all sounds very familiar cricket. Yep it's pretty scary having multiple neurological symptoms but no definite diagnosis.
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Old 10-04-2006, 12:31 PM #8
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Quote:
Originally Posted by pals1107 View Post
Early DX and TX, I laugh when I hear those words in reference to any disease. That is what is promoted by hospitals and insurance, but they don't practice it, it's just a media thing.
Pat
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?

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Old 10-04-2006, 12:57 PM #9
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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!
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Old 10-04-2006, 01:29 PM #10
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Quote:
Originally Posted by SallyC View Post
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.
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.
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