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Old 11-24-2009, 01:13 PM   #1
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Opinions and thoughts, oh, please!!

Hello, everyone! It's been a while since I posted on the forums and I'm hoping a few people remember me. : ) I've been told that I have Fibro for over 20 years, but I always doubted it because I keep getting progressively worse with new symptoms that I'd rather not discuss in this post, because it's gonna be fairly long to begin with. I BEG for your opinions and thoughts on my MRI reports, although I do know nobody's a doctor here. We all know that waiting is the hardest part, so please, I beg and ask that you tell me if the last MRI is similar to any of your MRI's that confirmed that you have MS - what I always thought I had.

MRI of the brain without contrast due to chronic migraines- Age 30 impression: Very tiny punctuate area of white matter hyperintensity in the left frontal region which is non-specific. There are some prominent CSF (Virchow-Robin) spaces but I see no cortical infarct. I see no evidence of acute intracranial event.

MRI of the brain with and without contrast to check for MS - Age 35 impression: No acute enhancing demyelinating foci. There are a few scattered tiny white matter foci of increased signal intensity on FLAIR and T2-weighted sequences mainly stable from 2003. Interval development of 2 non-acute non-enhancing white matter foci are seen in the frontal lobe regions.

MRI of the brain with and without contrast to check for MS - Now, age 37 findings (more detail): There are numerous small white matter lesions scattered within the supratentorial brain parenchyma. These are all less than 5mm without mass or abnormal enhancement. There is no abnormal diffusion signal. The white matter lesions are peripherally located in the juxtacortical white matter.

Impression: There are numerous small white matter lesions scattered within the supratentorial brain parenchyma, predominantly in the juxtacortical white matter with no mass effect or abnormal enhancement. These are nonspecific and differential considerations for a patient this age would include sequela of chronic infectious or inflammatory process, collagen vascular diseases, or less likely demyelinating disease. Follow-up examination in 3 to 6 months would confirm stability of these lesions. Neurologic consultation is recommended.

I find it odd that my age was brought into this, and I don't quite understand why he added "less likely demyelinating disease", considering the hundreds (quite numerous!) of oval-shaped lesions that I saw on the images that I've studied online for quite some time now. In addition, I had the spinal tap done in 2008 and everything came up fine. Thank you for listening and I hope I didn't hurt anyone's eyes. ♥

 
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Old 11-24-2009, 03:27 PM   #2
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Re: Opinions and thoughts, oh, please!!

hey Nuthatch! I remember you!! Glad to see you are still with us!

Your age was brought up because what is normal for a 30 something, is NOT necessarily normal for a 80 something year old...so its always mentioned on MRIs...all of mine have my age, too.

The fact that you are looking at your MRIs and seeing as you said "considering the hundreds (quite numerous!) of oval-shaped lesions that I saw on the images that I've studied online for quite some time now" is WRONG!! DONT DO IT!! Its not worth it. What appears to be lesions to you and me- is usually white matter which is supposed to be there, and really- only a radiologist or Neuro, can tell the difference....please dont delude yourself into thinking you see what you THINK you see...its not worth the addded stress.'

The radiologist said the lesions are UNSPECIFIC. Believe me, if he had a thought that they matched up with anything MS related, it wouldnt say Unspecific....the fact that they are unspecific, and where they are located, doesnt SCREAM MS...but it still can be from a autoimmune disease, prior infection, etc. NOT All lesions are MS..its dependent upon size (yours are very small) placement (yours arent necessarily in the right place) and shape- which is NON specific. So, youre going to have to trust this doctor that what he sees, isnt screaming MS to him.

To Cover his butt, he wants you to follow up in 6 months...that means another round of MRIs if the neuro agrees to it. MRIs should be done every 6 months while you are getting a dx, and once a year after that- thats normal.
The fact that your spinal tap, less then 2 years ago didnt show the antibodies for autoimmune disease (you said it came up fine) further concurs that we arent looking at a classic case of MS here.....anything is possible, but right now, youre not in a high risk assessment.

Keep us posted and keep your chin up. You really dont want to hear that its MS....happy holidays,
Nikki
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Old 11-24-2009, 03:27 PM   #3
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Re: Opinions and thoughts, oh, please!!

Hi Nuthatch------------

the comment made by the technician of my MRI was that "usually found in much older subjects" the tech asked me during the procedure if I had a history of heavy cocaine use

The neuro dismissed MS out of hand.....

the MS specialist diagnosed when he saw the same test results......

wish I had more to offer.

much love to you----------------knuckle
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Old 11-25-2009, 09:42 AM   #4
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Re: Opinions and thoughts, oh, please!!

Hello mrknuckle and thanks for stopping by and showin' some love! : )

And, oh, Nikki! I am SO happy to see you! I was so hoping you were still around! God bless your heart. I remember you always telling me to not read my stuff. LOL! That's impossible for me. I am way too nosy for that!

I'm believing that he said they're nonspecific because it's a new doc, new radiologist and the new radiologist didn't have my past MRI to compare. After my MRI, I went home and back to the hospital and brought my past MRI CD in for him to compare and should be getting a 2nd report any day now. Either way, the Neuro has rushed me in today at 2:15 EST and hopefully, I'll get some answers! : ) Normally, it would have been weeks!! She has the past MRI results so she'll be able to compare anyway.

Shame I can't link anything here but...

Juxta: Prefix meaning near, nearby, or close. (Juxta) Cortical.

"Juxtacortical lesions are specific for MS. These are adjacent to the cortex. They must touch the cortex. Do not use the word subcortical to describe this location, because that is a less specific term, indicating a larger area almost reaching the ventricles. In small vessel disease these juxtacortical U-fibers are not involved and there will be a dark band between the WML and the (also bright) cortex (yellow arrow)."

Apparently, it is very common to have MS lesions is this area and I've read that many places now. I've been told that common lesions for MS are 7mm or smaller. What are your experiences? I believe I remember you telling me that yours were always huge?

And what about these black holes seen on my images? There are quite a number of them. Your experiences? Er, they look quite disgusting!

Much love to you!

 
Old 11-25-2009, 11:48 AM   #5
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Re: Opinions and thoughts, oh, please!!

The black holes are the remains of where damage was. Your body absorbs this damaged tissue and the holes are what is left. Maybe scientists can invent some liquid brain putty 'cause I need some spackling and a new paint job .
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Old 11-25-2009, 02:06 PM   #6
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Re: Opinions and thoughts, oh, please!!

Agreed with Jayhawk. You are mistaken about my lesions though....I had over 50 upon diagnosis and they were all very tiny and in fact clustered. Over the years, no more have developed, but I have in fact developed Black Holes, from previous lesions...eventually there is nothing left of that tissue, and black holes remain. Im all for the spackle idea!

I will add that when I had my last MRI, I thought I saw many ADDITIONAL black holes, but upon reviewing the films with my Neuro, learned that they werent holes- and were indeed supposed to show up as black marks on the films...again, my first attempt at even looking at my films proved to me, what I already knew. DONT DO IT!

Sweetie, wish I could tell you more about your reports, but I honestly believe that if its MS youll know when the time is right...and if it isnt- consider yourself lucky. Not knowing has got to be the hardest thing in the world to accept, but having MS isnt always a picnic either! Youre in limbo land, and its horrible...but I cant honestly say, from your reports that anyone is leaning towards a MS dx...Maybe this new report will shed more light. Ill say a prayer that you get answers.

In the meantime- a happy holiday to you...and try to relax. Knowing might ease your mind, but trying to make it "so" isnt going to happen.....
Hugs and love,
Nikki
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Old 11-25-2009, 02:44 PM   #7
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Re: Opinions and thoughts, oh, please!!

Jayhawk, it's nice to see you! Your sig line seems so true and you always brought a smile to my face. Thank you!

Okay, here's what's going on, after seeing my Neuro. She called radiology to see if the comparison was completed and it's not. Argh, more waiting, but from reading the first report, she said it's probable MS.

She ordered a c-spine MRI and said if it showed even one lesion there, it's a definite diagnosis due to the others on my brain. She also ordered the Visual EP, BAEP and SSEP all on one script.

One of those tests reminds me of an EEG I had, and it was found abnormal back when I was 14 years old. That Neuro doc is still working and is in the same office as my new Neuro. How convenient that those results cannot be found, but I will never forget it because he said that most EEG's come up abnormal and no other tests were done.

And while my memory is bad, how could I ever forget a doctor (old Neuro from when I was 14) who says "I think it's psychological or stress and you need to see a therapist."?? And of course, my mother sent me to one. Those breathing exercises from the therapist certainly took away my pain. *huge eye roll*

Welp, Happy Thanksgiving to all! ♥

Last edited by Nuthatch; 11-25-2009 at 02:44 PM.

 
Old 11-25-2009, 04:18 PM   #8
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Re: Opinions and thoughts, oh, please!!

Nuthatch,
Just read your post to Jayhawk. Its great that those tests were ordered. They should give you more info to deal with....keeping in mind, NONE of them will show MS, but all of them will get you that much closer to ruling out everything else, thus giving you a MS dx.

Although I cant imagine hoping for a MS diagnosis, I can certainly understand why you are desperate to know WHAT is going on! So, I wish you the very best!!

Sounds like that doc you saw when you were 14 had issues of his own! To say that to someone that young...wow. Shame doctors like that exist. But, anyway, sounds like you are in excellent hands now. Again, ill say a prayer for answers for you...
Hugs
Nikki
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Old 11-26-2009, 12:03 PM   #9
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Re: Opinions and thoughts, oh, please!!

I think it is good that you are getting those tests. They all offer a cumulative filter which should catch any probables. I know I have had MS since I was 14, but that was long before MRIs. In 2002 they finally ran the MRI down to my thoracic spine and found fresh lesions there. If nothing is noted on your c-spine, you might inquire about the thoracic too. My visual EP was a positive for "something going on", but it is not a stand-alone tool. The VEP is, however, on the checklist for disability as evidence for MS. If you ever choose the SSDI route, I recommend reviewing the checklist and gathering the evidence in advance.

I hope you have a blessed Thanksgiving!

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