Location of white matter?

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Location of white matter?

Postby KimTN » Mon Sep 10, 2012 2:03 pm

Well, after finding out that my Vitamin D level was almost non-existant at just 8 and starting on my supplement, I thought I was miraculously "cured". Unfortunately, I have been having symptoms again for the past week. All sorts of burning sensations in various areas on my body, tingling and vibrations behind my right knee, pains in my right thigh and eye twitches in my right eye. Also right leg has felt "weak". Most of my symptoms this time seem worse on the right side of my body but I am having burning and I had bad pain in the bottom of my left foot and toes this morning. Have also had facial tingling around my left eye and get this weird feeling like my entire body is vibrating inside of me.

I had an MRI done at my neurologist's office (2 months ago) and it showed a few white matter spots in the frontal lobe ... so she said they might have been there for years since she has no other MRI to compare to, I would need another one in 6 months or so. I had horrible gait and balance issues which is what prompted me to seek a neurologist's help. Thankfully she witnessed those walking issues in her office. Anyway, after I started the Vit. D, I almost immediately felt so much better and had no more gait issues ... I truly thought I was CURED. So, I am very disheartened to once again be feeling as I do. It's been 2 months and thankfully, time for my follow-up appt. with my neurgologist ... tomorrow!

I am sort of just ranting here (sorry) but I am asking if this sounds like MS and if the location of the white matter spots on the frontal lobe are insignificant? She sort of acted like the frontal lobe was not the typical place for them.

Thanks for any input, I'm still so confused with all that is going on.
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Re: Location of white matter?

Postby KimTN » Tue Sep 11, 2012 10:25 am

Can't anyone take the time to respond to this? I saw my neuro this morning and she is scheduling a repeat MRI for December. She again said that I had 2 lesions in the white matter on my left frontal lobe that they wanted to keep a watch on. I am symptomatic still ... weakness and buzzing vibrations in right leg. Thank you for taking the time to read and HOPEFULLY respond!
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Re: Location of white matter?

Postby LR1234 » Tue Sep 11, 2012 11:09 am

I can!!!
I have lesions in my frontal lobe:( I have 2 very very large ones.
Do you find you have any cognitive issues (Out of interest as I have had them in the past)

I often wake up in the mornings with weird tingling and vibrating but I am not sure if that is coming from my lesion in my spine or my brain.

Sorry to hear you are having symptoms....Hopefully you will get some answers soon x
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Re: Location of white matter?

Postby lyndacarol » Tue Sep 11, 2012 4:54 pm

Kim – When I learned years ago that many people with MS and its symptoms have NO lesions (we even had a couple on this website) AND doctors had found upon autopsy that many people who NEVER had MS symptoms during their lifetime were found to have many lesions, I began to seriously doubt that there is any correlation at all between MS symptoms and lesions. Obviously, conventional medicine thinks there is a correlation.
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Re: Location of white matter?

Postby KimTN » Wed Sep 12, 2012 12:34 pm

Thank you LR and Lyndacarol for your time to respond to my posts! Yesterday, my neuro seemed much more concerned with my lesions ... I am "guessing" that it is because I am now symptomatic again? Anyway, she came out and said it could be MS or Sarcoidosis (which I really don't think my symptoms "fit") but she is going to schedule another MRI for December (6 months from my first one). She will also re-check my Vitamin D to see if the RX supplement has helped.

As far as symptoms, I have weak legs today and a very strange sensation from the base of my head to my lower back ... along my spine. It feels (so hard to really describe) sort of tight, sort of numb, just uncomfortable is all I can say. I have also had twitching and stabbing sensations in my right eye.

As far as mental issues, I did have word mix-ups again yesterday which have gotten really bad in the past as well as I have had hesitation with getting my words out in the past as well. Really do not like that one at all. I am now feeling a headache coming on over my left eye ... oh boy. *sigh*

Thanks again for your responses!

Kim
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Re: Location of white matter?

Postby Phil123 » Mon Jan 25, 2016 5:56 pm

Hi Kim, I am hoping that you are somewhat active with your emails and that you receive this. But I was wondering what ever came from this? It's been about 4 years since your post, and I am going through something similar. Today, was the first day that I received the first set of results, where they found white matter inflamed on the front lobes. I now have to make an appointment with another specialist to find out more. But I would guess it will be similar to your story since I have many of your symptons.

Please help!
Thanks,
Phil
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Re: Location of white matter?

Postby KimTN » Tue Jan 26, 2016 6:29 pm

Phil123 wrote:Hi Kim, I am hoping that you are somewhat active with your emails and that you receive this. But I was wondering what ever came from this? It's been about 4 years since your post, and I am going through something similar. Today, was the first day that I received the first set of results, where they found white matter inflamed on the front lobes. I now have to make an appointment with another specialist to find out more. But I would guess it will be similar to your story since I have many of your symptons.

Please help!
Thanks,
Phil


Hi, Phil!

Yes, I will have been officially diagnosed with MS for 3 years on February 5th of this year. I was quickly diagnosed (using the MRI film from the neurologist that I referred to in this thread) by an MS specialist! The clinic where those MRI tests were made, MISSED more lesions on my cervical spine and even missed ACTIVE ENHANCING lesions! *rolls eyes* So my DX was very obvious to the MS specialist. I would recommend that anyone who suspects they may have MS, go the extra distance if needed and see an MS specialist! General neurologists just often don't diagnose appropriately!

So as far as my symptoms, I have many at this point and have had some bad relapses. I have lesions on my brain, cervical spine and also my brain stem ... which isn't good! :(

I hope you can get all the answers you need, Phil!

Kim
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Re: Location of white matter?

Postby ebrownkirkland » Thu Jun 22, 2017 7:38 am

Hi Kim, I hope you still monitor your email and see my comment, which is actually more of a question. I am very afraid of what the answer might be... But first, let me just tell you how sorry I am to hear that you've gone downhill since your diagnosis. I assume you have relapsing remitting MS so I hope that you are in a remitting stage now and that medication is helping you.

I am writing because I have a question about my MRI results that I'm hoping you might be able to help me to make sense of. My neurologist had me go in to "assess for demyelinating disease" (the MRI report said "Evaluate for multiple sclerosis"). Here are the findings of the MRI:

COMPARISON: Outside MRI on 10/11/16
FINDINGS: MRI examination of the brain was performed both prior to and after administration of intravenous contrast material. Intravenous Gadavist 9 cc was utilized.

Scattered white matter lesions are present. One of these is new or has increased in size compared to the prior study. It is immediately adjacent to the right lateral ventricular atrium. It measures a maximal 8-9 mm in size. There is no diffusion restriction, but the lesion mildly enhances on post-contrast imaging.

Other lesions are stable. Occasional subcortical right frontal lobe lesions are noted, each measuring about 2 mm in size. There is a 3 mm lesion in the lateral right frontal lobe. There are similar small lesions in the lateral left frontal lobe. No large tumefactive or worrisome confluent lesion is present.

There are no abnormal fluid collections. There are no masses. There is no mass effect or midline shift. The ventricles are normal in size, shape, and configuration. Diffusion-weighted imaging is unremarkable. There is no evidence of acute infarction. The intracranial flow voids are grossly normal. The gray-white matter junctions are unremarkable. Clival and calvarial marrow signal is normal.

IMPRESSION:
1. There is an 8-9 mm lesion in the right periatrial white matter, new or increased in size from the prior study. It enhances on post contrast imaging.
2. Other lesions are stable

Just hoping you can tell me what all this means. I have been monitored by a neurologist off and on since 2011, but in 2011 when I was sent for a lumbar puncture, it came back normal. I also had an MRI of the brain done way back when but for the life of me I cannot find the dang disc! I do remember that the report stated something like "nonspecific white matter punctate foci" or something like that... Anyway, based on my neurologist dismissing MS after my clean LP, I went for a long period of time ignoring other symptoms (which I would consider relatively minor) until October of 2016 when the thumb on my left hand went completely numb. Since then I've had other odd symptoms, including numbness/tingling in one side of my face (that's how all of this began back in 2011--I went to the hospital thinking I was having a stroke), and, more recently, numbness and tingling in my shins and all down the outside of my left leg to my ankle. I thought it was my lumbar spine that was causing all the issues, especially since I started having severe tightness in my right calf, but my neurologist only sent me for an MRI of my brain and c-spine (c-spine MRI was pretty much normal except for some bulging discs) because he is thinking it is MS. I do have a history of low B12 but I have been treated for that for some time now, and am now in the normal range. The neurologist said low B12 would not cause the issues I am experiencing, especially since my levels are up now. I mentioned to him that the results of the LP I'd had years ago was clean, and that I was told then that I didn't have MS because of those results, but he told me that just because it was clear then doesn't mean I don't have MS. I am a 39-year-old female.

To make matters worse, my husband was just diagnosed with MS about a month ago. They found three lesions on his brain--one was a centimeter. He had "Dawsons Fingers," which of course is typical of MS, but he also had high protein in his CSF, an elevated igG index, and one o-band. His symptoms began with optic neuritis (his VEP test was borderline). Anyway, this has been a nightmare couple of months for us. And to top it all off, my birthday was yesterday. My husband was diagnosed right around his birthday, too. Ugh.

At any rate, thanks in advance for your help. Sorry for the long message.
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