MRIs over time - a question regarding

[Ufrustrated2]

If MRIs show lesions, and the radiologist writes "demyelinating disease", then the doctor requests mor MRIs for the time span, what if the new MRIs show no change, that is no more lesions than the previous MRIs. And these are at 1.0T

Would that be cause for a doctor to say one doesn't have MS or that it isn't progressing (as far as the lesions are concerned)?

[Ufrustrated2]

>>The 3 Tesla MRI is definitely picking up lesions that would not be seen on a 1.5 Tesla (and certainly not the wasteful "open" MRI some people unfortunately get) and the lesions were clearly not sprouting up overnight, so I do agree with the latest neurologist.

I think I will fax that little reponse from Dr Kantor regarding the "wasteful open MRI" such as the .07T i've had. ;-)

Thanks for that!!

[Ufrustrated2]

to help refresh via a quick history for your viewing pleasure:

1986: active-duty Navy -- just prior to back injury surgery - LP showed high WBC, O-bands, high IgG index. surgery canceled due to that and bi-lateral conjoined nerve roots.
        2 more LPs over 6 months -- WBC going down, WBC going down. O-Bands still present.
        2nd opinion Navy neuro dismissed it all as false positive. Sent to shrink for loss of taste, equilibrium issues, stomach issues, some sensory issues -- Navy said it was panic issues

1987 - med-honorably discharged and then into the VA system. they never took another LP to see it's status. over the next 23 years have had numerous symptoms, all documented. they like sending people to shrinks - cheaper and can blame the vet.

2002-2007: serious equilibrium issues, loss of hearing (wear aides), feeling like you are falling down, insane headaches, that darn loss of taste and tongue feeling numb,
senory issues in random places, face and feet usually, the freaking fatigue, can't sleep, cant get comfortable. VA says i'm stressed out should find another job. always thought is was my heart. i showed them the tests from the Navy, they dismissed it.

2007-2009: new city. new VA. typically argued with the local neuro. he thought all things with me were subjective. thought i had CFS or fibro. i asked him to check my CSF. he declined, it wasn't warranted. he dismissed the Navy tests too, mainly because that neuro 23 years ago called it all "false positive', like it was some gospel or something. due my headaches and fatigue he ordered an MRI for fatigue. 0.7T, it came back "something about ischemic changes". The PVA uses that little statement. What the PVA and doctors don't say is what that report actually says is, "Possible ischemic changes versus demyelinating disease". "Demyelinating disease may be difficult to exclude.

the local ordered the LP then as agreed, and it came back o-bands >5, "supported evidence of MS", needs clinical correlation.

local neuro called to discuss DMDs and I requested a second opinion. he sent to a MS specialist at VA-UCLA. he ordered more MRIs and the standard blood work to rule out mimics. He found numbness and some sensory issues and stated the O-bands represent an imflammation of your brain (CSF) and we need to find the cause of that. so far so good.

next set of MRIs at 1.0T came back specific "demyelinating disease" this time, no mention of the ischemic thingy or whatever. that had been dropped. and it was the same radiologist.

They were to start DMDs and the specialist said he was almost certain i had RRMS.

Then in June, out of the blue he called and said your LP was negative, looks like you don't have MS or need treatment!! He either got mixed up with someone else or the bean counters at the VA put things to a halt to stonewall. He wanted another LP. I said no, I have had 4 in 23 years and they all have shown o-bands, and i have a hx of symptoms. there is no reasone to do another one.

He said then, we need another set of MRIs! go figure that one. It was the second one at 1.0T that clintched it i thought and so did my local neuro.  So I wait for these new series to be shceduled. And I requested 3T with MS criteria. Whether they do it or not is a different matter.

btw, Doc Q has seen my symptom list. There is nothing on that list cant show a corresponding doctor visit regarding them. did the neuro read it? i dont' think so, he likes says all those things are subjective. why the heck is it listed as valid on the McDonald criteria?

good luck if you volunteer at the VA. some are great others are not.

I'll check out Dr Kantor's page, thanks!

[Karen99]

Dr Kantor on MedHelps neurology page answered a question similar to yours:

http://www.medhelp.org/posts/Multiple-Sclerosis-MS/Absence-of-worsening-MRI/show/744310

[Karen99]

I breezed through that site and got the jest of it.  It ticks me off to put it mildly.

There has got to be a way to cut the crud and get to the bottom of your symptoms, but it's not looking that way.   I forget what your history and symptoms are,  but if you have o-bands and an abnormal MRI, well WTF are they waiting for?  

You have peaked my interest greatly because I have been considering volunteering at the local VA hospital to see for myself what takes place there.  I've heard treatment can be shabby.  

If what you say is correct about what the doctors are telling you, they are teetering on malpractice.  Can sue the military, so a lot of folks find themselves up the creek.

I'm really disappointed in this.  When I get some time I'm going to educate myself and talk to some folks.  What is happening to you is inexcusable and all, if not most Americans would be appalled by this.

Be well and keep advocating for yourself.  Be well.  

[Ufrustrated2]

thanks, i've used the PVA before. it really depends on the city and VSO (vet service officer). like life some only do the easy claims, and a few will really try to help. just depends on the city.

in this city it is a no go. i showed them my LP and stuff. and he said some people have o-bands and that is normal for them. he seemingly didn't want to discuss or hear about the latest MRIs so i left.   he said the "doctors haven't diagnosed you with MS yet, so there is little i can do", to paraphrase. he is still looking at years old data sheets in my c-file.  the VA has a funny way of not getting some documents in a vets c-file. you have to file a specific form regarding documents being omitted, which i have done recently.

nope, been there done that here. i can try the epva or contact national for a NSO and request a new officer, but that is usually a waste.

you can read what other vets think about most of these organizations on http://www.hadit.com/forums/  ... you can judge for yourself.

i do appreciate your time and help though. i will check out the epva.org and see what's up.

*i persevere so never fear

[Karen99]

Hi again.  In my "MS Bible" that I have written about here, it lists "Electronic Information Sources" for information about MS.  Two of them dealing with vets are:

Eastern Paralyzed Veterans Association:  www.epva.org
Paralyzed Veterans of America:  www.pva.org

Though the names of these sites use the term "paralyzed" the author of this book names these as some of the best sources of info available re: MS.  

[Ufrustrated2]

yes, I've had MRIs with contrast

0.7T : possible ischemic something or other vs demyelinating disease
1.0T : demyelinating disease + pos LP for o-bands + history of symptoms

i don't think my neuros listen much to a vets' symptoms. the doctors usually say, "that is subjective". at least my local neuro says that.

i now know their priority is cost savings and not diagnosis. since I can walk and talk, i'm placed on the back burner as far as the VA is concerned. i'm just one of thousands in such a black hole.

[Karen99]

Have you had an MRI with contrast?  

BTW, my neuro diagnosed me on my first visit by listening to me and confirmed his dx with MRI.  The LP was done at my suggestion.  It was negative, but that did not change the dx,  

[Niecy40]

I am totally there also. My neurologist has prescribed medicine after medicine for me, and nothing seems to work. I am to the point where I am looking for a MS specialist in my area. I have been on 3 different meds for MS. First, rebif, then copaxone, and now betaseron. Do you think that I am wrong to seek a specialist? If stress brings on relapses, I am really!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! stressed out right about now. Also is there anyone out there that maybe having pain in their arms, back, and neck. I'm  often getting the feeling of heaviness and loss of coordination, when dealing with my arms and hands.It is even to the point when I just maybe raising my arm, especially my left. When I am taking a bath, sometimes I have to stop right in the middle of it, because of the numbness, I can't finish until about 5 or more minutes.

[Ufrustrated2]

Hi Shell,

Maybe they will, I'll fax it to my two neuros.  And that pdf suggests higher than 1.0T? I thought I saw field strength "no specific recommendations". I have to read and re-read things to see and get it, these days, bear with me.

I did indeed ask for 3T this time and I know full well this town has it. I faxed the request to my local neuro and to his boss, Chief of Staff here,  and to the Congressional office that is following this.

Don't forget the VA probably has it's [own] criteria - to deny Dx - to save money.

mucho gracias Shell,

[sllowe]

Hi there,

If the Dr. is at least concerned enough to re-run MRIs each 6 months maybe he'll be willing to read the MRI protocol:

     http://www.mscare.org/cmsc/images/pdf/mriprotocol2009.pdf

Can you push for at least a 1.5T?

ttys,
Shell

[Ufrustrated2]

Both of your stories I can relate to.  I don't think the MS specialist listened too well to me nor took into consideration the history of documented symptoms. ShockedToday, same here with the VA, always maintain a copy set of records. With me they sugar coat all MRIs unless I push. Healthcare nightmare.

They put off my situation for another round of MRIs and  I wanted to ask what the 'usual" outcome is if in a 6 month period, 1.0T MRIs get labeled "demyelinating disease but no change". My LPs have always been pos ofr o-bands.

Thanks for your time, you answered my question.  Cheers!

[ShockedToday]

I had an mri on a 1T years ago.  It showed several lesions and I had demylenating disease written on the report.  My neuro at the time said nothing to me about that and I didn't know that I should get a copy of the report myself.  I was given migraine medication and sent on my way.

Fast forward to last year when I felt like I was falling apart.  I ended up with another mri on a 1T and it showed 20 lesions and had demylenating disease written on the report (got a copy this time.)  I was given my dx, had it taken away a month later due to a neg lp.  I got it back when I went for a 2nd opinion.  

So, depending on the doctor, it appears even changes on an mri does not mean you'll get a dx or keep it.

I hope that made sense.

[Karen99]

Hi.  It is very possible that new lesions won't show up for years.  I went for three years without new lesions and no "progression."  The new lesions were seen after a step-up in the MRI machine.  (went from a 1.0T to a 3T. )  Since that time there are "few" new lesions.  I've had MRI's continuing on with the 3T and were no change for 3 years again.  

At the time of my diagnosis, I was in a full blown attack.  Based upon my history of ON one-half year before (which no one properly diagnosed at the time) and a previous episode of substantial cognitive difficulties and relatively minor symptoms which I was seeing a rheumatologist for, my neuro tentatively diagnosed me with MS based upon my history alone.  Half of my body was partially numb and had resolving double vision. The MRI confirmed his suspicion, although that alone was not enough to make a diagnosis because it read "suggestive of demyelinating disease."

Except for brisk reflexes my neurological exam was normal.  There were no 0-bands in my CFS.

In diagnosing MS, it's all about  HISTORY, HISTORY, HISTORY.
  
My point is, neurologists do not have to personally witness every previous episode themselves and "see how it goes" when they have a suspicious MRI in front of them. If they LISTEN to their patients in the here and now and their HISTORY and SYMPTOMS, it could save a lot of unnecessary grief.  

There is NO cause for a doctor to say one doesn't have MS if there is history and an MRI that shows demyelination.  Sometimes it is prudent to rule out the mimics, other times it isn't.

By definition MS is a progressive disease.  It may progress a little or a lot.  It can remit for years. Disease progression does not always correlate with MRI findings.  Patients can have a lot of lesions with few symptoms and the other way around.

Neurologists can have their "time span" by listening to their patients.  They don't have to have multiple MRI's if there are correlating symptoms.

This subject is a point of contention for me.  Too many neurologists lack the self confidence, knowledge, listening skills, and ability to perform a decent exam.  Their patients suffer because of it.

Be well.