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My Brain MRI results! Help!!!

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Posted 8/1/2011 7:29 PM (GMT 0)
Today is just going from bad to WORSE!

Tomorrow is our llmd.  I called to make sure nurse had my coinfections results as well as my mri results before I got there.

She said she didnt have the mri so I got hold of it today to hand carry.

The results scare me to DEATH!  I think it means I now have MS.  Is this reversible or do I have this forever?  I was hoping for something before I get there so I am prepared for what he might tell me.

My MRI results say:

"There are several focal areas of signal abnormality within the projectional white matter tracks.  These are more numerous in the frontal and parietal lobes, particularly the right frontal lobe.

Findings are suspicious for demyelinating disease."

"There is no intracranial mass, mass effect or edema.  The ventricles and cisterns are normal in appearance.  there is no pathologic contract enhancement."

IMPRESSION:  "Abnormal MRI exam of the brain.  There are multiple small focal areas of signal abnormality within the projectional white matter tracks, particularly in the parietal and frontal lobes.  Findings are suspicious for demelinating disease."

Am I only going to get worse or can I reverse this???

PLEASE tell me something good

Posted 8/1/2011 7:42 PM (GMT 0)
Oh dear, that is a shame that you would get this news without having your doctor right there to calm you and provide you with helpful information.

Lyme can mimic MS, but you will get more answers tomorrow.

I am so sorry you have this worry.

Take heart!
Posted 8/1/2011 8:04 PM (GMT 0)
gosh! I agree. It just seems so wrong that anyone would just hand you a report like that (or any report for that matter). Take a deep breath, write down the specific questions that you have. And trust that your Dr. will help you understand it tomorrow. The body has amazing ability to heal. Yes, Lyme can be tricky. My you be blessed tomorrow with the right plan of action.
Posted 8/1/2011 10:17 PM (GMT 0)
Try to stay positive. I also had lightups on my brain MRI which the neuro suspected to be MS. However, lyme can do the same thing and will also cause demyleniating disease. I am feeling so much better than last year in April when i got those results. I too was scared to death and figured I woud just get worse and worse and that hasn't been the case. Make sure you write down all your questions for your apt. Your body is capable of recovery and with proper treatment you will do fine. Again, think positive. Best of luck tomorrow.
Posted 8/2/2011 3:25 AM (GMT 0)
 

Scorp,

I think a lot of it can heal with proper treatment.

 

Posted 8/2/2011 9:01 PM (GMT 0)
keep us posted scorp. im interested to hear what your doctor has to say about the correlation of brain lesions and lyme. and if they are repairable. ive never had an MRI but im pretty sure if i did it would show some damage. especially last year. good luck.
Posted 8/2/2011 9:33 PM (GMT 0)
There are actually a fair number of individuals with Lyme who have abnormal MRI's that return to normal spontaneously or with Lyme treatment. So yes, relax and wait for your doctor to interpret the report and images. Sometimes they can rule out MS by where in the brain the white spots are at...or so it is my understanding...
Posted 8/2/2011 10:38 PM (GMT 0)
Hi Scorp10,

OMG....I so feel your pain! I hope that by now you have been to the doctor and received good news.

Wanted to let you know that I too have Lyme (DX Jan 2011) and the year before that, thought I had MS. Went to UCSF MS Center. Had 20 lesions on my brain, but not in the right location, shape, etc for MS. My Neuro asked me "have you had lyme disease?" when he first saw my MRI. I had a bunch of other tests for MS too and all came back negative. My lumbar puncture was also done for Lyme which came back negative too. It wasn't until I tested at Igenex that I showed positive for Lyme with Echrilciosis. (sp)

Anyway, I've since had another MRI showing no changes and will be having another in a couple of months. If that one is clear, then MS is completely off the table which I think it will be. I also have mostly neuro symptoms but my symptoms have greatly improved since starting ABX in late January 2011.

Keep us posted and I am wishing you the best of luck!
Posted 8/3/2011 4:21 PM (GMT 0)
 

UPDATE after dr visit:

Well yesterday was a long 15 hr dr visit day-(5 hrs each way with a headache the whole time - ugh)  Woke exhausted and with a migraine today.

The dr did not have the actual scan so he was not able to see WHERE exactly or the shape etc of the white lesions.

So just looking at the brain scan results letter the dr said ...

"this is not MS."

"you DO have lesions suggesting demyelination disease...it's classic lyme"

"I think it is possible to stop the lesions, that is what we are hoping the meds will do... the lesions 'could' even possibly heal them."
 
"we will watch it and monitor any changes and if need be we will redo the brain scans at a later date to see if any progression."

the infection is in your CNS"

"You'll be fine!"

That said he did NOT and obviously could not say that I would not continue to progress to the demyelinating disease.  And then is it MS???

So far I do trust that he knows what to do for me...the other patients seem to.  In the waiting room, several patients told me how he has brought them back from a disabling condition and/or saved their life.  One lady was there with husband but she was in very bad MS condition.  Now THAT scared me bigtime.


My Quest lab co-infection bloodwork showed negative for all

(But that it is possible to change to positive at a later date). 
It also showed I DID have rocky mtn spotted fever but is negative now??  I got rid of it somehow.
Also I DID have Epstein Barr but NOT now but I am a carrier now??

MEDS - he added Biaxin to the doxy 400 I am on now, but I forgot to ask what that was for.

Next appt in 90 days unless any other problems in the meantime. 

So even tho I am still somewhat confused, all I can do now is to do my best to eat a good diet, exercise, supplement, detox and take what abx he tells me to, de-stress, stay positive...and hope for the best.  Eash huh?
That is probably all any of us can do.

Lesson learned  ...DO NOT   nono   open any results ahead of time because your imagination will just run wild and cause even more stress.

 

Posted 8/3/2011 5:46 PM (GMT 0)
Good lesson learned!

And good news. Sounds like your LLMD knows what he's doing.

Hope you start to see some results soon.
Posted 8/3/2011 11:24 PM (GMT 0)
Oh sorry to hear that, everything can be reveresive and don't give up hope! And if you get prescribed immunosuppressive drugs DON'T take them.
Posted 8/4/2011 11:43 AM (GMT 0)
Steroids, and all the things used to treat RA, lupus, MS and Crohn's disease. You can google immunosuppresive drugs for more info.
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