Have any of you been Dx with no brain lesions?

[thewildrose]

My dr told me today that I have no visible lesions on my MRI, but he still believes I have MS. Scheduled for LP on 6/13 (eek!) and a new MS blood test (anyone heard of this?).

[Redwings]

Hi rose:
The lesion issue isn't as straightforward as it might seem.

There are people who have spinal cord lesions -- and no brain lesions -- who are diagnosed with MS because their overall presentation is characteristic of MS. Brain lesions aren't necessary if all other criteria are met.

There's also the possibility that a person has brain lesions that are too small to be detected on MRI. While it's possible that small lesions might be missed on one or two brain MRIs, it becomes much less likely -- by randomness alone -- that they'll fall between slices and be missed on multiple MRIs. That has to be a factor in diagnosis.

There are people who are diagnosed without any CNS lesions (only about 5% of total cases) because their medical history and the results of other tests are consistent with MS. The majority of them do, though, later develop central nervous system (CNS) lesions that are consistent with MS. The longer a person goes without developing CNS lesions, the greater the possibility that the condition is not MS.

I was diagnosed with MS without brain lesions, but it turns out I was misdiagnosed because my neurologists failed to pay attention to all of the other evidence that indicated that it wasn't MS. That's an example of how brain lesions (their presence of absence) are only one piece of the diagnostic puzzle.

There's a vague area that does come up occasionally, and that's the situation of a few people who are diagnosed with MS who never seem to develop CNS lesions somewhere. Those people get -- and maintain -- a diagnosis of MS because MS is a diagnosis of exclusion and there doesn't seem to be any other possible condition to explain the person's signs and symptoms. However, the hallmark of MS -- going back about 100 years, first verified by biopsy and autopsy and later by MRI -- is multiple sclerotic plaques somewhere in the CNS. A disease that never develops multiple sclerotic plaques can't fit the diagnosis of MS even if that's the label a person was given.

The more that's learned about MS, the more it's apparent that what's now called MS is probably several different diseases. Many medical and scientific experts believe that primary progressive MS may be a different disease than relapsing remitting. And for decades it was thought that neuromyelitis optica (NMO) was just a variant of MS. Evidence over the last 10 years or so has revealed that NMO is a separate disease. (I was ultimately diagnosed with NMO, which most commonly doesn't involve brain lesions.)

The lack of CNS lesions complicates a diagnosis of MS. You said that your doctor told you that you have no visible lesions on MRI, but your thread title mentions only brain lesions. So whether you ever had a spinal cord MRI factors into a diagnosis of MS.

A lumbar puncture can be helpful in providing information for making an diagnosis of MS. However, there are no signs, symptoms, or test results that are 100% exclusive to MS. There is no single test that is diagnostic for MS. About 90% of people with MS have positive, characteristic CSF findings with a lumbar puncture. But those findings aren't exclusive to MS, so there must be other supportive findings in order to make a diagnosis of MS. And about 10% of people who have been determined to have MS based on other factors have normal/negative LP results. A normal LP doesn't offer any insights into MS.

In recent years, some researchers have found what appear to be genetic/chemical biomarkers for MS. There's no official protocol for the blood tests that indicate the presence of those genetic markers. The scientific panel that revised the McDonald diagnostic criteria for MS in 2010 could have considered these genetic markers, but instead bypassed them completely. That means that any doctor who makes a diagnosis of MS based on any of those biomarkers is working independently of the worldwide diagnostic criteria.

There is currently no indication that the presence of the biomarkers is equivalent to the actual "disease of MS" in an individual. It might be comparable to the status of a "carrier" in other conditions, in a person who doesn't actually have the disease him/herself. There is also the complication of the theory that "autoimmunity" is the disease, with all of the different autoimmune diseases being simply "flavors" of autoimmunity. So having presumed biomarkers in a blood test for MS currently doesn't mean that the person actually has MS when there isn't any MRI evidence of the multiple sclerotic CNS plaques that are the hallmark of MS. Having biomarkers for MS plus indications of autoimmune activity may be only an expression of autoimmunity in general but not an indication of MS itself (at least as currently understood).

The biomarker theory is much too new for there to be evidence that any of the MS DMD treatments will be effective in anyone who doesn't show the characteristic physical damage of MS. So as far as the usefulness of the MS blood test, and any decision made because of it, you and your doctors are on your own. It will be interesting to see what information other posters can offer about the MS biomarker blood test.

Caution: this post was not proofread.

[donnainct]

Yes!

I was dx back in 06 based on symptoms, and a tiny lesion on my spinal cord(cervical area). I went numb on left side for like 3 weeks. They did do a spinal tap which did have the proteins they look for in ms. Im going for an mri next week havent had one in 2 years. As of then still were no brain lesions. Hope it stays that way! As for the LP its not bad at all. i didnt feel a thing. I did get a headache afterwards. I had 2 lps done because 3 years into diagnosis no other signs or symptoms of ms they took me off avonex and in 6 months major relapse! what are your symptoms?

[SNOOPY]

Hi thewildrose,

Yes, I was diagnosed without lesions showing on the MRI. I recieved a definite diagnosis of MS based on a positive LP, neuro exam and symptoms. I was also in a pretty severe exacerbation during the entire diagnostic process.

As far as the bloddtest, yes I have heard and read about it. To the best of my knowledge it is not widely used (the doctor has to order the kit) and the reliability of this bloodtest is still questionable. Make sure your insurance will pay for the blood test, it could be expensive.

[thewildrose]

Thank you all so much!

Thank you for all the wonderful information. I have to say, if it were not for all of the replies I've read on this board about LPs, I'd be scared to death! But, thanks to all of you - I'm not

I've had symptoms on and off for 12 years. Was dx with Optic Neuritis in 2001 (actually ran from the Neuro's office and never went back at first mention of 'Spinal Tap' - suffered on my own since then) I also had EVP and Neuropsych exam, which concluded fairly severe cognitive problems and would not be able to work more than 5 more years.

Pain and fatigue have been fairly constant for 12 years - gets worse, then normal - never really 'good'. Cognitive problems - can't find word I want and have to substitute, say the wrong word (leaves instead of weeds) or say them backwards (finger on skin instead of skin on finger), a lot of trouble remembering a phone number long enough to dial it, trouble remembering the code I just wrote on a paper long enough to type it on the computer (part of my job about 1,000 times a day), calling coworkers by the wrong name (omg, SO embarrassing), forgetting what I left the office for - sometimes even when it was to go to the restroom - stuff like that, has bothered me for 12 years - then...

About six weeks ago, could no longer crochet, began dropping things, tripping over my own feet, cognitive stuff got SO bad it was scary, even being used to this stuff. Pain was worse and began limping again - I knew it was coming. Went to my pcp and she finally said - you need to go back to neuro. She did some neuro tests and said my brain doesn't even know where my right foot is and had spastic muscles across the middle of my back. That was on a Friday - by that Tuesday, could barely walk by the end of every day - the 'drop me where i stand' fatigue hit me every day, sometimes twice - pain horrible - numbness in feet, legs, tingling fingers. That day, I had driven very slowly the 7 miles to work, began having head tremor - my dr called to see how i was, said I was not talking right - sent me to ER.

She has had me off since then and not allowed to drive. Speech got better - was very delayed for about five days - had to search and search and search for words. My husband also said I repeated what I said several times a day. I ended up in ER again on mother's day with chest pain, also having left hand tremor - dr said costocondritis (i know i didn't spell that right. Pain in left rib and muscle directly behind in back for four days and hard to breathe - moved all across back - then in left ribs - then back to right right in center of chest - then left center of chest - it hasn't really gone away, just gets better and worse.

Still limping - starts as just a small gait adjust for right leg in morning - drunken both legs by afternoon. 'drop me' fatigue every day about ... um now - 1:00 or so. Nap or no nap, around 4:00 is my 'wiggle time' - lose my balance enough that I can't stand still - my body wiggles. Left eye now blurs and pain as well - not too bad. Have I bored you yet?

Neuro said there is 'something' on my spinal mri - did not say lesions - showed me dark spots. Someone is supposed to call me and come to our house to draw the blood for the test. My Neuro has apparently been using this and said he wants me to be sure to tell them on the phone that I cannot pay a copay - he says no patient has been charged yet from what they've told him.

As always, thank you so much Redwings for all the wonderful information - I am going to research some of those leads