aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Am curious to find out what type of MRI to get to show lesions. Have had many regular ones and one with dye in the past. Last one was in 2003 or 2004 before my diagnosis of Lyme and co's.
Am having brain spasms and seizures and inquiring minds would like to know what to have done.
Any ideas out there?
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6213 | From Columbus, GA | Registered: Jul 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
An EEG would show seizures - if they happen exactly when the test is being done and if the electrodes are sensing the point(s) of origin.
Typical EEGs cannot read the entire brain (esp. brain stem) and certain chemical reasons for seizures- such as chemical reactions and toxic load to liver might not show up on an EEG.
Usually lesions can be seen by MRI. Some LLMDs have stated that often a MRI needed to be interpreted by someone who really knows lyme and co.
You might search out the work of Brian Fallon, (MD or Ph.D ?) - he is head of the lyme center at Columbia Univer. and has written about this.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Thanks for all the replies!
Am leaning towards another contrast MRI.
Thinking that lesions might be present now since didn't have Bart symptoms until after IV therapy ended and six months later presented with Bart rash in 2006.
Also have more neurological deficits than before. Have never stuttered in my life until this year and at times couldn't talk at all.
Was so confused couldn't figure out how to open my car door with the remote. Got lost in my own yard.
So am thinking I'm getting progressively worse with the treatment protocol that I was on.
Will post when I find out what is going on.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6213 | From Columbus, GA | Registered: Jul 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I stutter a lot - and sometimes can't talk at all. A lot depends on how busy the environment is - and how many distractions and how tired I am.
The MRI did not show anything there. Well, it did show that I'd had two minor strokes somewhere along the way, but they determined that for a person over fifty, that was normal. (I might say "what?!" but they just say, "no big deal")
A QEEG (a functional EEG) did, however show lots of dysfunction. For me, it seems to have to do with my sleepy brain waves, etc. or - other causes, of course. I had to give up trying to figure it all out.
Still, just know that no test will show everything. And, with treatment, many symptoms reside.
If you do the contrast, be sure to drink lots of water or other stuff to clear your body afterward. Also, always wear great ear protection with an MRI.
Good luck. I hope you find what you need to make decisions about what path to take.
posted
I have had various levels of central nervous system problems including cognitive, coordination, muscle control, sensory, emotional and psychological.
The severity has been up and down over 10 months of treatment.
All of my MRI's have been normal (with and without contrast)even during the worst symptoms.
Recently I saw another highly regognized Lyme disease researcher and specialist who had me get a very specific type of scan called a SPECT scan. and this was ordered specific to Lyme disease.
This SPECT scan showed lesions, poor blood flow and white matter in EVERY part of my brain, while MRI's showed nothing.
The doctor that sent me for the test described my brain as looking "moth eaten".
While I didnt expect the results to be this poor after 10 months of treatment, it was somewhat nice to know there was something physical causing my frusterating symptoms, and now there is a "base-line" for future comparison.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi friend,
My child had a "weighted T2" study at the hospital closest to me. The outpatient facility doesn't have the right machine...it's not strong enough to get the views needed to assess for Lyme disease.
I remember something about "slices". I would have to search LN to find my original posts, but the specifics are there...I posted somewhere between mid-August to the end of September 2006.
My child had the MRI with and without contrast. Nothing abnormal showed up, which is not unusual.
My child had the SPECT scan in Feb. 2007. Again, nothing showed up...at least that was what I was told. I'd love to find a Lyme literate neurologist to review these results. I have them on disc.
This child had a regular EEG...our LLMD wasn't surprised when nothing showed up, because the LLMD thinks the seizure-like symptoms are from the sub-cortical part of the brain. Only the cortical part of the brain is evaluated in a regular EEG.
I'm sorry to hear you're still having neuro problems.
I've been busy dealing with the school system & getting evaluations so my child can get an IEP through special education.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
You may not show anything. I have an MRI done with contrast and I had no lesions.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
I've had a few MRI'S and no lessions but I had a weird report that I can still remember to this day, even though it was a long time ago.
The report showed atypical calcification of the basal ganglia, now if anyone knows what that means, please fill me in.
I have asked many Docs about this and NEVER got a straight answer!
I've had a few Spect scans and they all came back showing problems, the last one I had, my Nuero said I was getting worse and the infection had grown into other parts of my brain, yikes!
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
posted
I had an MRI without contrast which had no findings.
About 9 mos later, I had an MRI with contrast which showed several suspicious lesions and about 8 'less suspicious' ones.
I was happy to have contrast MRI, especially because, if my abx treatment is successful, my lesions may be shown to have shrunk in my next MRI.
MusicMan, I'm glad you can still play. I have played guitar almost everyday since age 11, but since LD, I don't have enough finger/wrist strength or coordination. I am looking forward to getting it back, it has been such a loss to me. And believe it or not, my singing too - for awhile I could scarcely talk, certainly not sing, and the singing hasn't come back yet (and, for good measure, no whistling, 'neither'!!) So God Bless You, and I hope you will be able to play out again in the very near future.
otm
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I've had two brain MRIs - one with gadolinium contrast dye, one without. Both showed multiple lesions - no improvement with four years of treatment so far, but at least no worse.
What shocked me is that the radiologist - here in a city where they refuse to believe Lyme exists - put in the report that the lesions are consistent with Lyme Disease.
Like you, the symptoms of seizure-like activity, brain spasms, along with myoclonus, tremors, paresthesia, all came on with Bartonella.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I had several MRI's. ALL without dye.
Do note a warning has been issued about the dye. Given a choice I wouldn't use it.
NOT given a choice I still wouldn't use it and never have. I was told the ONLY reason for the dye was to make the job easier reading them. It saves docs a few seconds.. and hospitals don't want to pay someone to read them if a few seconds can be saved in $$.
This came DIRECTLY from the MRI docs who read them.
My MRI's showed lesions on the first two. After treatment the lesions disappeared on the next two.
When I was younger..I watched my brother have an allefrgic reaction to the dye and stop breathing. NOT cool.
Turns out my father and both brothers were allergic.. so I deferred.
They treat you like garbage if you insist on NO dye.. but tell them to stuff it and don't do it. They won't tell you.. but it IS your choice.
I had an MRI with contrast and without. This was before I started Lyme treatment and I was in the worst possible shape.
My MRI came back totally unremakable.
Don't be surprised if nothing shows up. The MRI is what saves me from my obsessive thoughts of "what if I have a brain tumor". Atleast I know thats not it!!!!
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Cool]](cool.gif)
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic