I've had an open 1.5 MRI which indicated only microvascular disease. Before I invest the money to have a private 3T MRI (and possibly alienate my family Dr), I wanted to ask how many on this forum have had invisible lesions that then showed up on the stronger machines?
Ok, how do we find out what kind of sotware they are using and how do we know if it's better or not? I had a bran MRI on an open 3T, which showed several "non-specific" lesions. I am in the process of trying to get my neuro to order and MRI of the spine, which would be done on the same machine. I am almost certain that they will find spinal lesions d/t my symptoms. I have a lot of left sided numbness down my back and in the front from the ribcage all the way down to the groin. Also frequently experience MS hug.
I had mine done on a 1.2 open Tesla. The radiologist reported several periventricular white matter hyperintensities. The old neuro didn't even look at the films. My new neuro says the films are "difficult to read" and "blurry".
I called the imaging place and asked about their strength of the MRI, software and how thin the slices were. I was met with great hostility. The only thing I did get was that it was 1.2 strength.
Did they follow MS protocol on your MRI? I think that means you need the contrast and 3mm slices.
As far as the alienating your regular doc---NO ONE is going to care about your health like you are. You really have to stick up for yourself and advocate for you. If your regular doc has a problem with that than it's his/her problem PERIOD. You can find another doc if need be! I know it's scary.
Quix has written some really good health pages on this kind of thing. I highly recommend reading them. Upper right hand side of screen.
Redflame, we are both in the same boat. Incapacitated with numerous hypersensitivities and no explanation. I just found a site where radiologists will look at MRIs and give a second opinion. I asked them as well if the MRI should be repeated on a stronger machine. That seems like my best first approach. I can't afford to alienate my GP at this point. They are hard to come by around here, and (understandably) a new Dr would be reluctant to take on a "problem". I'm uploading my film now, and will update you in a couple of days what the response was
I will add to Quix's comment that likewise, all jurisdictions in Canada have similar provisions in law with respect to access to one's own healh record. This includes access to one's imaging reports and films (though a reasonable fee may be charged).
I am new to this forum but very impressed by your answers :-)
I am a 33 year old male from Sweden but will now try your forum as I have a hard time finding competent contributions.
I have experienced symptoms highly compatible with MS for about one year know - e.g. tingling sensation, dizziness, vertigo, leg soreness, RLS etc etc etc ...... and visual problems. Right know I have a clear color perception difference between my left and right eye (sunglass feeling on left eye) - maybe from a previous opticus neuritis?
However, in April-June this year I was taken through the full MS examination procedure:
1) Lumbar puncture
2) VEP and SSEP
3) Closed MRI of whole CNS on 1.5 tesla - no contrast
All findings were negative - no abnormality whatsoever and hence indication of MS.
The neuro has know given me the "congratulations" and "goodbye".
From your perspective and experience from this forum with the doctors and other forum participants .... how likely is is that we are still talking MS? I know we can always find exceptions to the standards but what do you think on the basis of my info?
Best regards SN1977 (sorry, if my English is not 100% :-))
I would cut and paste your post above in its own nwe question box - you will surely get an answer.
I have exactly the same symtoms as you, though I have multiple pervitenricular and subcortical brain lesions. However, the neuros still cannot decide if I have MS OR atypical migraines, or both. it's a very frustrating time.
Oh, and btw I had one MRI done on the 1.5 setting, showing "numerous" lesions. Then a second one done on a T3 setting, and the report said, there appeared to be more lesions than on the lower setting, but they couldn't decide if that was tecnique-related or more actual lesions, so the jury was out. GRRRRRRR
I am pleased to see everyone exchanging information specifically about the topic of 1.5 vs 3T MRI machines. As an individual who works at an outpatient medical imaging clinic with a 3T MRI that we strive to use to its fullest capabilities, it is refreshing to see people talking knowledgeably about this aspect of health care.
There is no question that closed MRI will always out perform an open MRI.
Next in regards to magnet strength, there has been excellent feedback in regards to the differences not only in strength but in the software being used as well. Having a 3T with poor software and running it at maximum capacity is much like my blind grandma driving a Ferrari. It does you relatively no good.
I can tell you for certain that if you call and ask our center for information regarding the strength, software, slice thickness, difference in protocols for MS vs. seizures vs. normal brain study, etc. we would love to give you that information. It is the patients right to know and we strongly believe that.
The single largest issue preventing 3T MRI from becoming standard of care is the fact that there is no real accrediting body for medical imaging. There is the American College of Radiology (ACR), however they are still willing to give accreditation to centers that use an open 0.6T MRI; on top of this, you (and/or your insurance) are paying the exact same amount for a scan done on an open 0.6T as they are for a scan done on a 3T.
The bottom line here is that it continues to be the patients responsibility to advocate for themselves and demand the best care. Financial incentives and lack of education are the two most common reasons that a physician is not going to send you to a get the best MRI scan available. You should never have to worry about alienating a your physician when advocating for your own care. Your doctor should want the best for his or her patients, period.
after you get lied to enough times, have part of your life zapped out from under you, you'll never again give a hoot about alienating any doctor or member of the human race -- trust me or don't
>>I've had an open 1.5 MRI which indicated only microvascular disease.
i would love to comment on this but i really know i will go off in a direction that would be of no use to most people here. i'm now in counseling for it. as for your microvascular disease, fine, if that is really what the disease is, BUT, if some entity is using that to hold back other evidence that a 3T would see ... get my point?
>>Before I invest the money to have a private 3T MRI
invest the money. it is painful to do so, i'm going broke anyway so WTF, but without the objective evidence, doctors, disability people, friends, etc, will do to you as they please. even with that evidence, they still may, BUT, YOU will have the objective evidence. and with that, someone somewhere WILL take notice to help...hopefully before it is too late.
>>ask how many on this forum have had invisible lesions that then showed up on the stronger machines?
count me in. and a new lesion showed up last month. i paid myself for 3T/MS_protocol outside of VA. the VA wouldn't order new MRIs after 6 months on DMD so my non-VA neuro ordered them. you see where this is going i trust?
PDXpacs and others are so right in YOU/WE have to fight for our our well being and be our best advocate. once you get burned enough, this will become increasingly easier.
Thank you so much for offering your own knowledge and expertise. You verify what I have been telling people for many years.
The issue of the MRI software is problemsatic. How are any of us outside the radiological field going to be able to evaluate the quality of the software being used?
So, far I have just advised people to go for the
highest magnet strength
in a CLOSED MRI
using the MS MRI Protocol recommended by the Consortium of MS Centers
at what appears to be an up-to-date large scale imaging center.
If the MRI is at an independent center we might also ask what organizations contract with them - to give us an idea of what the local neurologists and hospitals think of them.
Recently we heard from an MRI tech that told us they had their own MS Protocol which used 5mm slices which were not done contiguously. This means that by definition they were missing areas of brain large enough to completely miss good-sized MS lesions.
Yes, it is very unfortunate that we must self-educate so completely as to ensure that we are even getting the proper MRIs.
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