Comparing MRIs

[Lil Bo Peep]

I have been treated with tysabri for about 18 months. (Prior, all the CRABs)  I had a MRI recently reviewed by same radiologist who did several of mine in 2008.  He notes increase in size of specific lesions from previous reports including his own, yet refers to them as unchanged.  He also notes prominent perivascular spaces are seen within the lower basal ganglia bilaterally.  I can see it clearly on the film as well.  This looks new to me compared to the May 27 2009 films which he is also using for comparison.  I can note to the naked eye on my films a number of changes including the Virchow-Robin spaces.

His impression is nonspecific foci of T2W/Flair hyperintense in pericollosal, periventricular and subcortical white matter, unchanged in size, number and configuration when compared to scan of 5/27/2009.  Small foci of abnormal signal are also seen in pons, the basal ganglia and cerebellum. None appear to be active inflammation.

What I find odd is the "Indication" is noted as "Demyelinating process" when it has always been "History of MS" for years.  

He also adds "if referring physician would like to speak to interpreting radiologist, please call him."

I have never seen that on any reports, the scans were taken at same imaging center and this radiologist has reviewed some of my scans  in the past.

I won't be seeing my neurologist for 3 months and I am curious if he is changing his  "impression" or I have a leukoencephalopathy virus.

Has anyone had such a report before and it be typical?

[Lulu54]

Hi Bo,
There aren't many people around here who are on Tysabri, and certainly none as long as you.  I'm glad you are back again and perhap can share more of your experiences.

Perhaps the change in language is nothing more than a more consistent use throughout their facility?  Sometimes there are changes that make no sense, but calling it demyelinating process rather than MS leaves them some wiggle room.  I tend to think of them as one and the same... all of my MRI reports read "demyelinating disease, such as Multiple Sclerosis."

Because this is of concern to you, pick up the phone and call the neuro.  Ask for a few minutes time to review your latest report so you aren't left worrying for the next three months.

good luck,
Lulu

[Lulu54]

I should also add, that your neuro would be calling you if they think there is a possibility of leukoencephalopathy.... right?  

[Lil Bo Peep]

I called neuro yesterday and she is the worst at returning calls.  The MRI could present that my brain was hemmorhaging and it is unlikely I would hear from her.  Also, looking at the films would be important as well.

The facility uses a protocol established by my MS doctor who retired and moved out of state.  All of my MRI's have said "history of MS" for years and the prescription indicated MS.  Since the radiologist was a reader of several of my MRIs in the past, I am puzzled by his change in language.  I am equally puzzled by a lesion HE reported in 2008 as 10mm and now reports is UNCHANGED at 13mm.  Huh?  He also reports this time a 16x7mm on right lobe (NEVER noted in any prior reports) yet now it too is unchanged.    Makes no sense to me.

I'm going to call the radiologist and see if he will speak to me since I have given up on the neurologist.

[Lil Bo Peep]

Thank you for responding Lulu54!  I apologise for my previous omission.

I am not the best one to share tysabri stories.  I have had every side effect and it has been a difficult time.  I have hung in there hoping it would get better as I know so many people that are just doing phenomenally well with the drug.  Typically I was miserable 27 out of 30 days.  Just as I was starting to feel human, it was time for another round.  Most people are the opposite.  They feel great until a few days to a week before the infusion at which time they start craving the drug.  I kept hoping that would happen and even changed the schedule to every 6 weeks instead of 4.  There was a slight improvement as I had a little more good days toward the end.

[Lulu54]

Then you have something new to add to the tysabri talk around here.  None of us want the details sugar-coated.  We would much rather deal with  the realistic facts than some fantasy.

Here's hoping the tysabri is doing something beneficial for you, even though it doesn't make you feel great.


as for the language difference, you probably have a good idea in calling the radiolgist and asking him directly.

be well,
Lulu

[Lil Bo Peep]

Unfortunately I am one of the few (and there are some) who either derive no benefit or side effects are too great.  My MS is no worse but no better from tysabri.  My doctor does not like the side effects though.  

I can tell you everyone else at my infusion center is doing great!  They love the drug, feel it is giving them back their lives, ie, no more fatigue, some are now walking (from chairs).
So I really am the oddball out on this one.

[sllowe]

Hi there -

Nice to have you back!

Was the magnet strength and brand machine the exact same as last years? If so, maybe they are using updated software that enabled more accurate measurement of the original lesions, (though they note a new size of it and state unchanged)....just my initial thoughts.

"History of . ." would have to do with the script or order for the MRI and mentioning of demyelinating process or lesion should be part of their finding.  

Hmmmm, and a "never documented" but stated unchanged lesion 16x7- ? Oh, there does need to be an addendum to your report.  I'd demand it.

Hoping your Dr. calls you back soon - you do deserve an interp!

-shell

[Lil Bo Peep]

Hi sllowe.  My doctor is not going to call me back if she hasn't done so by now.  She didn't even return call my internist after DEMANDING he call her.

It is same magnet strength and machine as all of mine have been since late 2007 done there.  Same place even though on a few occasions I had them elsewhere.  He is comparing to a May 2009 done there but by a different reader.  Oddly the last one he read on mine was May 2008.  It is the May 2008 report where he specifies various dimensions of lesions.  He describes them now as larger yet writes "unchanged."  I know radios have a language all their own and their use of words is not the same as street English!

The prescription just said MS.  I've never seen one of mine that didn't except for the one in May 2009 which was to check for PML.

I see my neurosurgeon for another problem on Tues. so I am going to bring films and report to him and ask him to translate for me.  He's a great guy and he has bad news for me so I am sure he will do the best he can to read the report and films.

I'm really tired of doctors though being so undoctor-like, if there is such a thing!!