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848718 tn?1257138801

New here; I'd love some feedback on my MRI

Hi everyone!

I'm brand new here, but I've read a number of posts, including the amazing collection of info that Quixotic1 put together. So glad I found this place on a random Google search!

A brief summary: I've been sick since June 2007 with an illness no one has been able to pin down. My primary care doc, who I love, uses mixed connective tissue autoimmune disease as a working diagnosis, but my rheumatologist is skeptical. I have a positive ANA (29), elevated SED rate and CRP, high positive anti-Cardiolipin IgM (80), Vitamin D deficiency that doesn't respond well even to mega-dose Rx, low Ferritin levels again despite supplements. But I'm negative for any lupus or RA specific tests. I did test positive for parvovirus early on in my illness, but I'm fairly sure that's a red herring (and it's normal now anyway) as are the low levels of monoclonal immunoglobulins that led me to be diagnosed with MGUS.

I had a brain MRI back in October 2007 that came back as "unremarkable." But when I was diagnosed with optic neuritis a month ago, that triggered a brain MRI again to rule out MS.

Here's what the report says:

Findings: The ventricles appear to be within normal lijmits in size and configuration. No abnormal extra-axial fluid collection is observed. No significant mass effect or significant midline shift is noted.

In image 12 of the FSEIR axial sequence, two punctate foci of increased signal are observed adjacent to one another in the white matter of the right frontal lobe. These may be the result of volume averaging. They may also be associated with chronic small vessel ischemic disease or, perhaps, vasculitis. The larger of the two may be present, in retrospect, in the comparison examination from 10-4-2007. It has not clearly changed significantly in size. Plaques of multiple sclerosis cannot definitely be excluded but would appear to be less likiely. These foci do not enhance following the administration of intravenous contrast.

No findings are observed that would suggest the presence of an acute or subacute infarction. Very mild to mild mucosal thickening is identified in the left maxillary sinus. Very mild mucosal thickening is noted in the right maxillary sinus, and in the frontal sinuses, ethmoid air cells, and sphenoid sinuses, bilaterally. This mucosal thickening is new or has progressed since the earlier study. Increased signal is also identified in the mastoids, bilaterally, in the T2-weighted sequences. There may be small air-fluid levels within multiple mastoid air cells on the right. These findings are new since the earlier examination.

Impressions:
1. Two, punctate foci of increased signal are observed in the white matter of the right frontal lobe in the FSEIR axial sequence. Please see discussion above.
2. Mucosal thickening is observed in the paranasal sinuses, bilaterally, as described above. Ther are also findings suggesting the presence of bilateral mastoiditis.

Interestingly, while I finally found the punctate foci on the right frontal lobe (thanks, Quixotic1, for defining punctate!) on the DVD of scans they sent me home with, I also saw an identical two spots (but in a different place and spaced differently) on the left frontal lobe. I know I'm not a dr and shouldn't try reading my own MRIs, but that confused me.

I totally have symptoms that are common for MS, including killer fatigue that's worse than when my 4-year-old was a newborn and I didn't get to sleep more than 2 consecutive hours at a time for months. I thought that had to be the worst possible kind of fatigue in the world. I was wrong. Since my latest flare that happened at the end of February, I've had prickling on both hands and my left foot/leg. Sometimes it's mild and just annoying, sometimes it's incredibly painful. At its peak, I also had that sensation of painful needling on my face along my hairline. I have joint pain but no visible swelling. I've been having bad headaches for about six months now. I run low fevers most of the time, and occasionally spike higher ones. I know there's more and I'm just spacing. Oh, I guess memory problems are something to mention. :)

If anyone has any advice to offer, I'd be grateful. I see a neurologist on April 20 to discuss the MRI. I saw her early in my illness (October or September 2007) and at that point had no neurological issues as far as she could tell. But she didn't run any tests beyond an exam.

Oh, and in hindsight, I'm wondering if my spate of falling is related to all this. And at the worst of my flare in Feb., I could barely lift my feet to climb stairs to my bedroom. And for at least a few days of that, I could hardly get out of bed to use the bathroom much less do anything else. (The flare was triggered by my overdoing things when I inadvertently overcommitted myself and then was too embarrassed to back out of some volunteer work. It would have been no big deal for me when I was healthy, but it was WAY too much for me at this point.)

Thank you for any help you can offer!
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848718 tn?1257138801
hi everyone!

I have my neuro appointment next Monday, but I just got a blood test result that I was wondering if anyone was familiar with Ganglioside GM1/GD1a/Gd1b/Gq1b Antibody, IgG/IgM?

My GM1 and GQ1b results were normal, but my GD1a and GD1b results were definitely in the positive range (not weak positive or high positive, but the regular positive category listed by the lab). The paperwork I received says "GM2 and GD1a antibodies have been associated with Guillan-Barre variants, motor neuropathies and sensory demyelinating neuropathy, while GD1b has been associated with sensory neuropathy."

The test was ordered by my hematologist who said he wanted to make sure that my MGUS (monoclonal gammopathy of undetermined significance) was not causing any nerve damage. I haven't heard from him yet -- a nurse in the infusion center gave me the printout of the test results a little while ago.

When I see the word demyelinating, I of course think of MS. Does this test have any significance for an MS work up?
Helpful - 0
Avatar universal
To the best of my knowledge, yes, if you have Lyme, it would still show up in your blood work despite a time lag.

There are places where there is no Lyme, but not in the continental US.

Lyme can be a horrible disease if it invades the CNS. I know a 14 year-old girl with chronic Lyme who has frightful neurological symptoms. It's very sad. Her parents were vigilant but still this happened.

We've had a few members here being investigated for MS who turned out to have Lyme. Some prefer this to Lyme forums, because Lyme people seem polarized. It's quite controversial in terms of treatment.

Anyway, the best outcome for you would be something eminently treatable. Keping my fingers crossed for you.

ess
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848718 tn?1257138801
Thanks for your thoughts! And I'm so happy to hear that y'all don't think I have MS despite the ON. :)

My lab reports say an ANA result over 10 is positive. Mine is 29. It doesn't report a x:xx type number at all. My ESR varies over the past two years. The most recent one, done about a month ago, was 78. I haven't been below 35 since I got sick (and that only once, and was very brief). My "high" was 89.

I'm 42, fwiw, re the signs of aging and the brain.

And I see my internist/primary care doc tomorrow, so I guess I'll bring up what y'all said about Lyme and discuss testing it. It just doesn't seem to be all that common out here in OR anyway, and I definitely hadn't been going anywhere that it seems like it would be likely. But we've done plenty of other tests just to rule things out that I supposed it wouldn't hurt to check this too, although the incidence of false positives makes me a little leery.

I guess I don't know enough about Lyme -- would I still test positive this long after onset of illness if it were Lyme? i.e. do the after effects last longer than the infection, as I hear sometimes happens with parvo (which I did test positive for early in my illness but now test negative for, including PCR).

Thanks again! And I will definitely let you all know, both about a Lyme test and what the neuro says after my 4/20 appt.

--SM



Helpful - 0
147426 tn?1317265632
Hi, I wanted to welcome you, too.  Any comments I have will likely be superfluous, since I am going to emphasize what everyone else said.

I too, think your symptoms point in the direction of an inflammatory disorder, either autoimmune or infection.  Specifically the continual running of fevers is not related to anything that MS does.  Joint pain and swelling points directly toward something other than MS.  The positive ANA is interesting.  How high is the titer?  It will be reported as something like: "1:60" 1:320" or some such number.

The "29" that you list sounds like a minimally elevated Sed Rate.  While it is elevated, it is barely so.  Minor things like ovulation, a cold, or a sinus infection could cause that.

The two punctate lesions are hard to talk about.  They are non-specific.  Basically, they have to be kept in mind knowing that you have neurologic symptoms, but also that we can have such tiny lesions by virtue of being alive, especially in the 40's and older.  I would caution you about finding other lesions unless you can be certain that they are not a part of normal stuctures that appear "unconnected" in the image you see them in.  Reading MRIs takes years of experience and a deep knowledge of neuroanatomy.  I don't even try.

The MRI Waayyyy overcalls sinus disease.  If there is a suspicion of sinus disease the Gold Standard test is a CT without contrast.

Optic Neuritis can be seen in with other illnesses, for example Lyme Disease.  When it is not accompanied by signs of an MS Mimic - thus appearing to be a stand alone - then MS should be watched for.

Lyme can occur without a classic lifestyle, location and without the bull's eye rash.  I would also push for getting a Western Blot sent to a major lab specializing in tick-borne illnesses.  Positive Lyme tests are not nearly as inaccurate as negative ones.

MS is Waaaaayyy down on my list of considerations for you.

Sorry I didn't have anything novel to say, but the "posse" pretty much covered everything, lol.

Good luck.  We will be intereted in seeing where all of this goes.

Quix
Helpful - 0
Avatar universal
I REALLY think you should revisit the Lyme possibility. You don't have to be outdoorsy, you don't have to wear shorts or sandals, and you don't have to get a bullseye rash. Deer ticks are tiny. One could have gotten on your clothes or someone else could have brought one in. Then maybe a tiny bite you didn't notice and that's all.

The thing is, blood work could quite possibly clear this up one way or another. Lyme tests are notorious for inaccuracy, both positive and negative. However, a Western Blot run by a good lab would be your best bet. What do you have to lose?

ess
Helpful - 0
848718 tn?1257138801
Hi everyone!

You're awesome! This whole place is awesome. I've been reading the Health Pages and working on my bullet list of major symptoms and the timeline for my illness. Boy I wish I'd been maintaining that all along because it's hard to recreate with my foggy brain. :/ But it's a wonderful idea and worth the work of doing it before my neuro appt because it's something I can update and use for future docs.

Amy & Ess: My internist and I have talked about Lyme disease, but it seems so very unlikely because I'm not the outdoorsy type at all. About as far outdoors as I got was going to playgrounds with my then 18-month-old daughter. But it's interesting that you mention it because after my optic neuritis, my eye doc called my internist to tell her about another patient he saw who had similar symptoms to mine and had Lyme. So she and I talked about it but agreed it seemed unlikely. I definitely never had the bull's eye type bug bite. (And since I don't wear shorts or sandals, a tick would have had to bite through pants and or socks.)

Bio: Thanks! I've thought I was "rheumy" too, but I haven't had any luck finding a rheumatologist willing to look beyond the fact that I don't have visible swelling most of the time and my disease-specific tests (RA, lupus, etc) come back negative. I know those negative tests don't rule out lupus or RA, but the two rheumies I've seen lost interest in me after they couldn't get a good test result. My internist uses "undifferentiated mixed connective tissue autoimmune disease" as a working diagnosis for me, and has for at least 18 months, and tells me we just have to wait for my body to "declare itself." So that's where I am, and I have to say I'm tired of waiting. :) I'm very non-functional with this illness, whatever it is, and I hate it. :(

sllowe: Thank you for that link! And for your thoughts! I do hope my neuro will be thorough. I saw her once, early in my illness, and liked her. My mom has myasthenia gravis and she did some tests then to rule it out, which was a relief. I'm not familiar with ACl ApL, or I'm blanking on it. I'll go google it now, but can you translate please? :)

Thanks again, everyone! I really appreciate it!!
Helpful - 0
378497 tn?1232143585
Everyone else has commented what I would comment except you sure did have a thorough radiologist reading your MRI! Some of us have MANY punctate and even larger lesions that radiologists just completely ignore. Hold onto that one.

And what ess said...make sure you have a very good neuro exam, and look into Lyme. You sound "rheum-y" to me. ;)

Bio
Helpful - 0
Avatar universal
Hi,  I am so sorry you are so ill, especially with such a little one!  I would echo Ess's comments about a proper Lyme disease test.  There are a couple of labs that specialize in tick borne illness, which is where I would try to have your labs sent if you can.

I am one who was (mis?) diagnosed with MS, but just found out last September that I have been CDC postive for Lyme disease all along.  Don't know if this "rules out" the MS dx completely, but I am currently being treated (aggressively) for Lyme and am starting to come around.  If I can help further please let me know.  God bless you, Amy
Helpful - 0
Avatar universal
Hey there! Welcome to the forum. And I'm sure your brain is too 'remarkable!'

With the disclaimer that I'm no doctor, just someone who hangs out here and learns a lot, here are some comments about your post.

You have a great many symptoms that don't sound like MS. Fever, joint pain, blood work showing inflammation (or infection?). Your MS-like symptoms are somewhat non-specific, and can happen with a lot of conditions. Optic neuritis, though, is pretty specific. This can be a standalone disorder, but it's often a precursor of MS.

I don't think your MRI gives a lot of information at this point. Punctate lesions are tiny, and many neuros discount them or attribute them to some other condition, like headaches, which you have. Vasculitis or ischemic disease are often mentioned, and to me mean "I don't know what these are so let's guess here."

I can only suggest that you keep following through with doctors, including of course, a good neuro. A thorough (at least 30 minutes) neuro exam can show a lot.

Just one other point. Have you been tested for Lyme, using a Western Blot done by a good lab? Everything you mention could be caused by Lyme disease.

Please let us know how things go.

ess
Helpful - 0
198419 tn?1360242356
Hi there,

I'm so glad you found us and that you've had the chance to read up on our health pages.  They are wonderful, and thank you so much for your compliments.

I am going to add on to your reading pile with a link to another discussion about developing MS after ON when you have lesions.  

Without doing my own research, I really just don't know much about the MGUS. But, it does seem that now w/the words the radiologist used "in retrospect" suggest to me that those small lesions were in fact possibly there during your last MRI, just not so visible at the time.

With this new information that you will bring to the Neuro I think you will get the rest of the work up for MS mimics.  I can't be certain, since I'm not a Dr., but it sounds logical to me.  Also, w/the ACl ApL - I suggest this be re-checked since it's a serious MS mimic.  It's not an easy dx, but a good hematologist would be able to get to the bottom of it.

Thank you so much for finding us and posting. I look forward to having you with us.

See you around!
Here is the MS and ON link:

http://www.medhelp.org/posts/Multiple-Sclerosis/MULTIPLE-SCLEROSIS-RISK-AFTER-OPTIC-NEURITIS/show/664930
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