posted
I went to a new PCP today. My second WB through Quest came back neg. along with the babs, erlich & bart tests.
I had more blood drawn for RA factor & a couple of other things & she wants me to have an MRI.
What does one need to know about that? Is it useful in dxing or ruling out Lyme or MS or anything else?
Still awaiting my IGeneX results...
-------------------- ~Erin Posts: 58 | From SE PA | Registered: May 2006
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LostCityAgent
Unregistered
posted
Met, I assume that your physician wants you to have an MRI of the brain? I further assume that she is desiring this because she suspects Multiple Sclerosis. What are your symptoms? What has been your pathological presentation, i.e. starts and stops, wax and wan? I have a lot of knowledge in the area and would be available to talk about this with you over the telephone. If you would like this feel free to PM me for my telephone number. Remember, MS is a symptom not a disease. Also, a Lyme dx is not based on blood but is pathological, such as your personal pathogenesis. Late in the game this is very important for you to work on. I can assist you with this also. So far, it saved my life.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
If you are having neuro problems, most Dr's will do a MRI BEFORE doing a Lyme test, that is unless you are in a highly endemic area.
MRI can rule a lot of thing out, it cannot however confirm or refute Lyme. An MRI is fast and provides direct evidence of a number of things, things that can be very bad and may need immediate attention.
The problem is that Some Dr's beleive that when an MRI is normal then there is not organic disease. Obviously this is wrong.... its like your car running really badly but the warning light has not come on... And the service guys saying the car is fine.
MRI has revolutionized MS diagnosis.... However, the persistent lesions that are seen in MS can also be created by other things, infection, blood flow and things yet to be discovred. IF THEY DO A MRI AND FIND "MS" LESIONS, YOU MUST BE TESTED AGAIN SEVERAL WEEKS (10 weeks or so) LATER TO VALIDATE THE FINDING.
This is becase in MOST MS cases, the lesions will come and go on a several week time frame. If they stay and do not change then I would very seriously pursue other cuases than MS, even if the lesions are "MS like" (there is a particularly common pattern for MS lesions... perpendicular to the lateral ventricles).
On the other hand if the lesions do follow the appear and then dis-appear pattern, then you can rule out lyme as being the cause (at least from what I have read) and mark it up as a case of MS.
I would have no hesitation in doing the MRI...
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I remember researching this when the neurologist wanted to do a spinal. At that time, my feeling was the SPECT test would indicate changes in the brain - the spinal and the MRI would not necessarily show that. I read Dr. Fallon's paper on Neuro Manifestations or something like that, under Medical Abstracts, I think. You might want to check that......... love dharma
Posts: 731 | From NH | Registered: Jan 2002
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Carol B
Unregistered
posted
All I can tell you is-if you get an MRI done- wear a Winter Coat! I had never had one done and assumed you had to disrobe and put on a gown, so I dressed very lightly-easy on easy off clothes.
But NO , they slid me into the tunnel-open at both ends-with my summer clothes on-and I was freezing-felt like the Chinook Winds were blowing down on me.
Then the report came back that no lesions or tumors or whatever were found-but they noted the results may have been compromised by "artifact motion". I was shivering the whole time! Jerks.
At least my insurance paid for it and it was painless. I daydreamed about white sandy beaches in the South Pacific to try to keep myself warm.
It was an MRI of my head, they put a metal grid over my face,not sure why, and told me not to open my eyes-boy was I tempted to peek but I was afraid the machine would suck my eyeballs out .
So that was my experience. Didn't change or diagnose my symptoms. Didn't change the fact I felt like I was descending into Alzheimers. Just made me grateful it was ONLY LYME DISEASE. Never thought I'd say that!
posted
John, please go back in and edit/pencil icon your LONG, continuous paragraph with NO breaks and NO double spacing in them.
We've discussed this before for us neuro lymies to be able to read/comprehend what you/others have typed.
We also learn when other lymies help us out by short paragraphs, and double spacing EACH paragraph. thank you.
To the poster, I had a MRI in April 06 and posted about it. I was "put under" since I'm claustrophobic. They found nothing except 1 lesion of "old blood clot blogged" area ... NO LYME lesions. This procedure was $10,000 plus.
Would I do this again; NO; Murphy's law hit ... everything that could go wrong, DID GO WRONG. I didn't need that extra stress.
Find out from your MD WHY he wants a mri done for what specific reasons. good luck either way...
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LostCityAgent
Unregistered
posted
Betty,
I do not always have the time to put such editing care into these posts. I am very busy and do often try to fulfill this need. I am a neuro-lymie myself. A serious case.
When I see an urgent need I respond immediately with what time I have left. A reminder that you can always copy and paste these posts to WINDOW and do this on your own. You can even enlarge the letters.
I will do my best but this will not always be possible much to my regret.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hi
RUA doctor.... Not a medical one, but I have worked a lot with the medical fellows in the area of imaging.
I have re-read my post and I did mis-state something, or at least forgot a word...
"rule out Lyme and chalk it up to a POSSIBLE case of MS." should have been what I said.
There is a scoring criteria for MS, one of the criteria is lesions seperated in space and time. One can infer the location of the lesion through clinical observation but MRI gives a direct display of the lesion. The space and time criteria is onlyone of the condtions that msust be met for a MS diagnosis.
The MRI- MS problem comes in when the lessions are fixed and do not move or disappear over time. MS can create such lesions after time due to multiple lesions occuring at the same spot.
These fixed lesions can even enhance with Gd contrast agent after time, but still the most common is the appear and then disappear type. Relapsing - remitting MS.
There is of course the progressive types of MS with fuxed lessions and in those cases I would seriosuly consider some type of infection as being the cause as even though it may meet the criteria for MS progressive disease, it also fits the profile of a infectious disease. As far as i know, for brain lesions, Relasping-remitting does not. Also when I say infection, Lyme is not the only one that can do this... there are losts, but fortunately many are treated with the same agents as lyme.
With Lyme everything I have seen written shows the lesions do not go away unless there is treatment with antibiotics. Brian Fallon has published some very interesting papers on this subject.
In some cases some Dr's will quickly intepret fixed lesions as MS, this particularly if you are a female (many due to the asymetrical higher occurance of disease in woman), and usually after exhausting any other explainations for the syptoms that are being seen (many neurologists know very little or have inaccurate information on Lyme but lots of info on MS).
Then there is the whole issue of UBO, unidentified bright objects. These are usually round or ovoid lesions in the brain. They are seen more in older people and seem not to have any abnormality associated with them except that that look like lesions. The cause is unknown and in most cases they are a casual observation that is ignored by the radiologist.
Hope that clarifies what I meant to say. Sorry for the confusion, while I try to be complete and accurate as possible, I often miss things or write them in a odd fashion.
My posts are not intended as medical advice on treatment or diagnosis but rather are intended to pass on some of the knowledge that I have gained so that a better understanding of the factors involved in the particular problem can be understood. In all cases diagnosis and treatment should be handled by your Dr.
Posts: 1184 | From north america | Registered: Feb 2003
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Betty,
Did you type that right? an MRI cost 10k+.
There must have been some other tests done also, otherwise you paid an abnormally high amount.
A typical brian MRI these days is $500 or so and a MRI angiogram a bit more.
If you have to do it again, ask for an "open" MRI machine... It is an MRI machine less the tube.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
On the script, it says "no contrast" is that what I want?
What are my symptoms? Started May 2nd with achey knee joints (they crack, but have always cracked I think.)
At the same time I was experiencing slight dizziness that has since subsided.
Now I have plantar fascitis (sp?)all day long. A few weeks ago I developed an all over sunburned feeling on my skin, mainly on the back of my head/back of neck but it is everywhere, seems to flare when I stress or read something or think of something stressful.
My left eye is bulging, in old pictures it appears that it always bulged a bit, but there is something going on with my vision in that eye. I have always had floaters, but I think they are more noticable or have increased. When I look at something bright (computer screen,sky, etc) a small "cloud" passes through my field of vision in the left eye.
I had an eye exam about 3 weeks ago & the doctor said everything looked fine after dilating my eyes. My vision was 20/20 in that eye.
I started amoxicillin 11 days ago & haven't noticed a change (3,000mg/day into 3 doses.) If anything, since going on it, my eye has gotten worse & my leg pain. My eyes are also very dry at night.
The other tests in the blood work were ANA w/reflex titer, comp metabolic panel, CBC w/Diff, ferritin, rheumatoid factor, sed rate by mod west, TSH w/reflex T-4, Free.
When my symptoms began, my baby was 7 weeks old. I have heard many mother's describe serious joint pain for many months after birth, this is my third child & I have never experienced this before.
~Erin
-------------------- ~Erin Posts: 58 | From SE PA | Registered: May 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
"contrast" is used to detect disruptions in the blood brain barrier. It is particulalry usefule for the detection of brain tumors and will "cuase them light up like a light bulb" as one of my colleagues used to say.
Some people are alergic to the contrast agent but in general, if a screening MRI is done (as it souds like in your case), the use of contrast is almost always done. If it is not done, some tumours are hard to see or to differentiate from other focal abnormalities. I don't want to second guess your Dr but you might want to ask when they do the proceedure.... they may use the contrast anyway as part of the radiologist request.
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
John, thank you for your comments back to me & your PM. I tried to reply to your PM, but your PM IS FULL; so no one can pm you until you delete a lot.
quote:Originally posted by david1097: Betty, Did you type that right? an MRI cost 10k+. There must have been some other tests done also, otherwise you paid an abnormally high amount.
A typical brian MRI these days is $500 or so and a MRI angiogram a bit more.
If you have to do it again, ask for an "open" MRI machine... It is an MRI machine less the tube.
David, yes, $10,000 is what was charged for the procedure and guy who puts me out...can't spell it! I couldn't believe it either.
I started with an OPEN, and the moment they clamped the face mask on me.....TOTAL PANIC ATTACK, and they would not have put me out for the 1 hr. I had to be in there. So that's why I chose hospital & being put under since NOISE levels bother me so bad too.
If others have had recent MRIs, how much were you charged? David, you've really got me thinking about this now. Recovery room was about $500 alone for the 5 minutes I spent in there.
Again, thanks David and John for your comments.
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LostCityAgent
Unregistered
posted
Good Morning, Betty I cleared my PM, so if you would like to
posted
My brain MRI with contrast was $1250 and covered by insurance. Anesthesia costs are very high so maybe that's why Betty's was so expensive. I personally feel anyone with neurological symptoms should have a brain MRI to look for lesions or other causes for their symptoms. If they are present, then the cause can be determined after that. It sure was a load off my mine when mine came back normal.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
One more thing: The contrast they use (Gadolinium) shows whether lesions are new or old by whether they light up on the pictures or not.
Posts: 340 | From Ohio | Registered: Oct 2005
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My understanding is they are old if they don't enhance. How old?, that I don't know. But since you had symptoms at 19 and you are still so young my guess would be that whatever it is, it started back then.(very young for MS)I know 2 different people who have MS. One is 30's, and one is early 50's, both female. They both take Avonex injections. They had repeat MRI's done and both showed no new lesions, just old ones. I know some lesions can heal but not all. So the Avonex is working for them so they probably don't have lyme. I don't know if this helped any or not.
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by LostCityAgent: If those lesions did not move, as MS lesions tend to move, does this hold more true to Lyme. Is this when then the radiologist stated that it could be Lyme?
I need to rest in my Lyme dx which is upheld clinically and I am serogenetive. But these lesions in the brain and the cervical spine leave me uneasy.
John.
John, I'm like you, with the MS/lyme diagnosis going on, with 11 frontal lobe brain lesions, largest at 5mm in the centrum semi-ovale. Just re-MRI'd em after one year, to find them looking 'zackly like they did a year ago. I spose that is good news. It confirms they are UNlikely to be MS.
Among other confirmatory and faith-building things, I just tested positive for babesia WA-1. (Along with being CDC positive for Lyme.) I mean, what are the chances of having MS and babesia WA-1?
As far as WHEN you got lyme'd 'zackly, I'd just forget about all that. You're never gonna really know.
Finally, what is this "SERONEGATIVE" thing you're talking about?
Is my memory failing (HA, that's a silly remark!!!), or didn't you have a *** next to a borrelia-specific band like band 31 on your western blot???
???
So whaddya mean 'seronegative' ???
Doubter, thy name is JOHN!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
Unregistered
posted
Patty, thanks. Good info.
Michelle. Do you want to get married? j/k...you always make me laugh. Always.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Just my 2 cents but I had a MRI 3 years ago before I started treatment,when my neuroborreliosis was so bad I was almost catatonic. My speach was so bad - stuttering and couldn't find the right words.
Needless to say my MRI was normal and showed no lesions. I guess in retropsect they had to rule out any thing horrible like a brain tumor or something.
I was suprised that I could have such bad brain damage and have a normal MRI. Luckily after 3 years of treatment my speech is more normal and the fog has lifted to a degree.
I guess in my long winded way I am trying to say- it couldn't hurt but on the other hand don't be surprised to get back a normal one either. I think my damage was on a cellular level.
A SPECT scan may have shown more of the brain damage.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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caveman
Unregistered
posted
Two years ago I had a MRI on my brain because of memory loss. At that time I had been treated for Lyme disease for one year, although I have good reason to believe I had had Ld for 8 yrs. then.
I also have a history of colon cancer, so my LLMD wanted to rule out that my memory problems weren't due to a tumor.
The charges for my MRI, with and without contrast, were $3037, plus $391 for reading the films. Due to my insurance, I only had to pay $231 and $13.95, respectively.
Although my hospital charged $3037 for the MRI, the charges allowed by my insurance provider, a network to which the hospital belongs, was only $1936.
Therefore someone without insurance is "charged" approx. 50% more than someone with insurance, in this example.
Depending on whether one is reporting the actual charges by their hospital, the amount allowed by their insurance company, or the amount they actually had to pay, that could help explain some of the differences in the costs that have been reported on this string of posts.
As for me, thank goodness no tumors. But the exam did show several tiny foci of hyperintensity within the periventricular and subcortical white matter likely due to small vessel ischemic disease.
My LLMD said that the findings were similar to those found in other Lyme patients. And recently my primary care physician suggested that the spots were due to my (slightly) high cholesterol levels.
Since I know I am riddled with Borrelia, and have numerous abnormal symptoms associated with my cranial nerves, I tend to believe that the abnormality shown on my MRI is due to the presence and damage of Lyme bacteria.
quote:Originally posted by bettyg: [/David, yes, $10,000 is what was charged for the procedure and guy who puts me out...can't spell it! I couldn't believe it either.
[/QB]
I'm sure most of the charges were for putting you under. It's expensive to do.
Carol....they have blankets!! Yes, I remember the "wind tunnel" very well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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caveman
Unregistered
posted
Sorry about my double post. I don't know exactly why that happened. I'm trying to delete one of them, and I'm looking for instructions, but I'm too addled to figure it out. The "Delete the topic" button just sounds too scary to hit! Where is "delete the (selected) post?" or "Edit" one's post? -caveman
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bettyg
Unregistered
posted
Cave, Hi! I'm here to help you my friend.
Go to the 2nd post, and PENCIL icon to edit. Just DELETE all the text there. and hit edit button to delete it all....you can show duplicate.
Then if my signature shows up, I hit the button at bottom showing NO signature so it's NOT taking up all that room and leaves room for more posters comments. Hope that helped you & others.
IF YOU were the originator of this post, you go to PENCIL icon, and at the top of the post is the box DELETE TOPIC...mark the box and hit enter.
The entire TOPIC post will be gone including anyone's comments they replied to. nifty huh.
Also, check the FAQ, frequently saked questions, at the top by SEARCH. Takes 10-15 minutes to read their tips, and they are WORTHWHILE to read. Timesavers! Happy deleting.
I noticed with the board going down on Sunday that everyone has had 2-4 posts each including me. Major problem with the system.
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