Is it worth pushing for a 3T MRI?

[SickMomma_PDX]

Hi everyone,

So I just (finally!) confirmed that the MRI I had in March was on a 1.5T machine. It showed some "punctate foci" in the right frontal lobe that the radiologist said was not typical for MS. Nothing else significant showed up.

My symptoms are so vague and weird, and while some are consistent with MS, some aren't. I'm wondering if it would be worth asking my PCP, who has been very supportive and helpful in the past, to order another MRI on a 3T machine. What do you guys think?

In some ways, I feel like if I could just have that scan done, and it's normal or close to it, then maybe I can cross MS off the list of possibilities for me. I'm so tired of being in limboland. :-(

On a side note, I had a followup with my neuro on July 27 that was distinctly disappointing. She essentially just confirmed my results of my normal LP and EEG, and said she would be available for further consultations if my PCP had any questions or wanted me evaluated again. It was bizarre because when I saw her before the LP and EEG, she talked about a bunch of tests she wanted to run, including a Lyme test, if the LP was normal. I was in bad shape that day (it hit 107 degrees in Portland, OR, and I was totally flared from the heat) and couldn't get my brain working well enough to ask why she wasn't pursuing other tests anymore. (Part of me thinks she's embarrassed because she was a no-show for my LP, which btw, she didn't even mention or apologize for when I alluded to it.)

I see my PCP tomorrow. Let me know what you guys think!!

Thanks!!

---SM

[Charley123]

I hope you won't give up.  I went through a similar experience and gave up looking for new docs for 3 years and wish I hadn't.  There are really good docs out there and I finally found a bunch of them that have been wonderful and who have helped me a great deal.  You do need doctors on your side.  You'll know right away when they listen to you and make eye contact and show compassion.  Think of it like this-you are in charge of your body and who will help to take care of it.  You do the interviewing and you do the hiring.  You do have all of us on your side and I hope we can encourage you to keep trying to find answers as we know what it's like to wait years for the right kind of help.  Charley

[SickMomma_PDX]

Thanks, ess.

I'm feeling kind of depressed about the whole thing, and tempted to just give up my search for a diagnosis. Except I'm really tired of being sick, and I don't think stopping going to doctors seeking advice is going to suddenly heal me either.

I'm pretty sure now that I've got an MS mimic, and not actually MS, but who knows?

And it's SO frustrating that the one doctor I've felt I could rely on to guide me through the mess did this. Now I feel like I don't have anyone in the medical system who's really "on my side."

[essdipity]

I agree. This lady is no longer to be trusted, no matter how much you like her in general. If she keeps pullling stunts like that she's asking for investigation by the local medical society.

Here's hoping you find someone just as good who keeps her priorities where they belong.

ess

[SickMomma_PDX]

Sigh. You're right, Lulu. :-(

I was so shocked by this because she and I had talked before about our shared feelings about herbal remedies; we both agreed that we felt it was foolish to take "medicine" that wasn't regulated by the FDA and that hasn't been shown by independent testing to be helpful. Sure, the placebo effect can be a powerful thing sometimes -- and I do acupuncture weekly unsure whether it's the placebo effect that makes it seem to help my energy levels or there's really something to it -- but when you don't know exactly what you're ingesting in a supplement like that and how it might interact with medications you've been prescribed, it just seems silly.

Sigh. You're right, even though I wish you weren't. :-(

Thank you!

[Lulu54]

Ok SM,
you already know what I'm going to say - you hve to get a new doctor.  I'm so sorry that she feels the need to supplement her income in  the practice by pushing The Isagenix cleansing program.  I tried to look at it on line, but it wants my name and contact information before it lets me go further.  I guess I could lie, but I saw enough to understand your disgust.

If  a cleansing program worked to improve our MS, I know a lot more of us would try it.  There's a lot of things I would try if it were proven that it worked ..... but they are unsubstantiated claims.  

Go find a new doctor and then let this one know why you have left.  

good luck,
Lulu

[SickMomma_PDX]

Hi everyone,

Sorry I didn't post yesterday after my appt with the internist. I was processing, I guess. And frustrated.

So, the internist doesn't think I have MS and therefore doesn't think another brain MRI is warranted "at this time." And I decided to accept that without pushing for a 3T scan.

What upset me, though, is she spent 20-30 minutes telling me about this "miraculous" nutritional cleanse thing she's doing, and how she lost weight and more importantly, got a huge energy boost from it. Of course, it's a MLM company (Isagenix, I think is the name) and you eat their stuff and take their supplements and who knows what's in it exactly since the magic ingredients are "proprietary." She's putting her mom on the system, and has a bunch of friends who have done it, and guess what? "It's even helped people with MS and lupus!" Grrrr.

I've been seeing this doc since 2005, and I've recommended her to so many people because she really *listens* and is willing to consider things I learn about in places like Medhelp or elsewhere on the Internet. My respect for her has taken a huge plunge though over this. I don't think it's appropriate for MDs to be giving testimonials for MLM "health supplements" like this in the examining room.

Thanks for listening to my little rant here. :-) I guess I'll wait awhile and if/when I need more MRI scans done, I'll just make sure they're on a 3T machine if they're doing an MS protocol.

[Fluffysmom]

Hi there.  I have examples from a 1.5 and a 3T in my pictures, about the same slice in my brain, and it really seems to have made a big difference.  They were both supposedly done under the MS Protocol.  

Depending on your insurance, it should be no problem to get a 3T MRI here in Portland.  If your PCP is willing to write the orders, just ask her to have the MRI done under the MS Protocol.  Your PCP should know if your insurance willl cover another MRI this soon, or you can call and check with them after you know whether your PCP is willing to write the orders.

OHSU has a 7T, but I was told it's only used for research.

Just my 2 cents; I would ask to have 3T MRIs of brain, c and t spine, and ask my PCP to order the Western Blot Lyme test and whatever other tests your neuro was going to have had run.

All those tests should give a clearer picture of what's going on; whether MS is a possibility, or if your test results point to something else.

Also, I'm all for getting your records from your neuro; you can fill out a release of information  form and request the chart notes/clinicians notes from visits with your neuro.  The neuro might send it all to your PCP and you can get copies from her.

Oh, and if your neuro is not really interested in further tests or follow-up,   then maybe you should think about finding another one.  I've found that once they lose interest, it's hard to catch their interest again.  Yours might be different, but its something to think about.

I had a heck of a time during the heat, too.  I'm enjoying this rain!  

Take care,

Kathy

[hbananas]

I have had what was described as a "small" singular lesion in my brain appear on a .3T open machine.  Then I had three spinal lesions show on a 1.5T closed machine.  Four months later, I had both done on a 3T at a surgical center.  The brain had a few punctate lesions around the horns and the same spinal lesions showed.

Later, when I started going to the MS specialist, I had them re-done on his 1.5T.  Brain looked normal, spine was still the same.  He said that the larger magnet doesn't do any good if it's not being done with the MS protocol, and mine were done by people accustomed to looking for things to operate on.

So, my take is that I didn't get my money's worth from the 3T, and I did have to pay more for it because it wasn't a preferred provider or freestanding MRI center.  I'll stick with my neuro self-referring to his 1.5T and having it read by the neuroradiologist he employs (the neuro also looks at them with me in the office and mentions things the radiologist doesn't.)  If and when he decides I do have MS it will be a result of objective symptoms, or appearance of a new lesion that isn't punctate and can't be attributed to hypertension.  The old, disappeared, small lesion and the spinal ones have already shown him dissemination in space.

[SickMomma_PDX]

Thanks shell!

My brain is foggy (like that's something unusual these days ;-) and so I got confused and my PCP appointment is actually Thursday, not tomorrow. But I will follow your advice on how to ask (luckily my PCP is fab and easy to talk to so that's not a problem), and I'll definitely let you know what she says and recommends.

I'm also kind of curious if there are now 7T and 8T MRI machines out there, did they really jump from a 3T to a 7T? And how come so many places are still running 1.5s or lower? (Well, actually, I know the answer to that question -- $$$$. It's got to be very expensive to get a new MRI.)

Thanks!!

[sllowe]

Hi there,

The neuro should be sending a report to your MD.  Your MD is your PCP afterall and needs to know what avenue to pursue for you.

I don't think it would be unreasonable to explain to your Dr. tomorrow that the end esults were discussed with this neuro but you did not receive an explanation as to what was thought to be going on.  That will also open the door for you to ask "Did this office receive anything from Dr. So and So?"

Let us know how it goes!
-shell