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Post by kiki on Aug 10, 2007 20:55:41 GMT -5
I had an MRI specto-something of my brain that shows some white matter so my Dr. (a believer from day one that its not mental) referred me to a neuro guy. I had such low expectations I rescheduled appt twice! I was so apathetic my hubby filled out the paperwork when we got there cause I was gonna leave much of it blank thinking it was a waste of my energy. Anyway when he asked me what my symptoms are I took a deep breath and tried to find words for the undefinable. I said "I have "hairs" that feel like spider webs, are only visible at certain angles in certain light and move-(they always go for my eyes). Heres the shock--he calmly looked me in the eyes and said "they arent actually hairs!!!!! I was so shocked I went into a stupid coma and just sat there occasionally nodding like he was talking about the weather. I NEVER ASKED ONE QUESTION which stunned my hubby speechless cause thats so not like me. It took two days for the rest of what he said to register. I want to share everything he said but its frustrating cause for some reason when I type I agonize over finding the "best" words to use and overwhelm myself--this from someone that made a living with the written word! Is there anyone interested enough that I could call and tell? If not I'll try to spit it out in bits and pieces. Im NOT being evasive--Ive tried to type this twice but was disgusted at how long it was taking me. Especially since Im rational enough to know Im not being rational Ive been so anxious to share everything hoping that this is encouraging.
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Post by imblownaway on Aug 10, 2007 21:17:11 GMT -5
Go ahead and spit it out.. Me know what you mean by cant find the right words. there arent any. me no type too good either. Please share. ;D
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Post by browncircles on Aug 10, 2007 21:48:45 GMT -5
Yes, please go ahead and tell us.
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Post by janedough on Aug 10, 2007 22:07:23 GMT -5
I know prevenge had the white matter in his mri. Don't remember what they told him.
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Post by Carrie♥ on Aug 10, 2007 22:09:57 GMT -5
Vivi...I can call you tomorrow and type it our for you if you feel like waiting that long. I know what you mean about not typing too well or choreographing the works with they type!?! Send me a pm I'd be glad to help.
Well...tomorrow may not be to good either. The kids are getting new beds so we've got to get the old one out of there and put together the new so it may have to wait 'til Sunday. Maybe some one else will offer...if not I'll try to do it Sunday.
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Post by prevenge on Aug 10, 2007 22:23:11 GMT -5
WHATS UP?!!! TELL USSSSSS!!!!!!!!!
biggest tease ever.
almost worse than fallin for a girl on the other side of the continent.
spit... it. out!
by the way .. welcome .. i know you don't post much.. but i .. and I'm sure everyone else.. wants to know everything that your doctor said to you.
-M
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Post by toni on Aug 11, 2007 8:53:36 GMT -5
Prevenge, you're so funny! You always have the right words, haha ;D ;D ;D Vivi, PM me with your number, and I'll call you as soon as you do! Then I'll write it all for you.
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Post by morgellonsmoe1 on Aug 11, 2007 14:35:15 GMT -5
Please tell us .. I have the white matter too but have only gotten dismissal looks and hatred from doctors . I had a DX of MS and have never been convinced ,
Please type out what your doc said cause Before the CDC put this on its web sight many of us have suffered the disbelieving opinions of this horrid illness. I beg you from my heart . Nothing is shocking to us . Nothing . We are the ones who need too hear this . Please ( I am praying for your courage and help to type this out .I understand how scatter brain comes with stunned excitement.)
Like when you first find out your pregnant . Who do I tell and you cant spit the words out cause your so in shock when you find someone.
Here there is no fear we appreciate you . Thanks in advance . The MS meds make me sicker and steroids put me in a hell you could not imagine please share .Thanks
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Post by valerie on Aug 11, 2007 22:15:54 GMT -5
I have the multiple sclerosis symptoms and on my mri he came back and said "your brain is beautiful"--I thought that was a strange description....I have the spider web feeling things on my face--especially coming out of my nose and eyes.....
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Post by toni on Aug 11, 2007 22:17:02 GMT -5
I just got off the phone right now with Vivi, and I'll post more of what she said tomorrow, but I wanted to not have anyone waiting in suspense about the white matter, and so far the doc said it is in the place in the brain that is indicative of MS, ((BUT)) he did a "foot poke test" to see if her reaction would confirm MS, but it did not!
So, the doctor told her "most docs" that weren't keen to this, would "think" she had MS when in fact she does not.
Also he said he's not ruling out parasites whatsoever.
More tomorrow.
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Post by toni on Aug 12, 2007 9:52:29 GMT -5
Hi Vivi Vivi said - (I'm writing for her) She had a spectroscopy MRI done a week ago, and was so glad when she was in the MRI tunnel that she could feel the movement inside her head from "these things" because she wanted them the docs so badly to see also. Her doctor is incredible, and told her he wants to know everything she's experiencing no matter how "petty" she may feel it is! He's positive it's not "MS" even though this "white matter" is very indicative of MS by the location in her head, but the doc is certain it is not MS. She told him about her fibers and her hair, and he replied that he understood, that it's not her hair! It's the fibers that don't burn, which was surprising she said that he seemed to know more about this than her. His partner, another doctor is a tropical neurologist who's also going to be much involved. (Thank GOD) And the docs comment was we'd be foolish to rule out parasites! (I'm adding this part now, cause I almost forgot after I posted this post) Her doctor ALSO asked her if she had anyone as in doctors, to test her for ((( mold and environmental toxins ))) too! Vivi said that so much information was exchanged with these doctors, and it was actually overwhelming after having experiences as we all have with being told "we're DOP" that these doctors were SO VERY interested, that it actually was so shocking to hear them speak as they did, so it all had to "sink in" the overwhelmingness of this all...which I sure can understand that. I know that will be music to all our ears when we get to have that day too...and (we will). Vivi also in the last few days had quite an experience, besides having seen the most interested and compassionate doctors on the planet! haha She was drinking a vanilla (milk) shake. The paper cup sort of crunched inwards, and her thumb went into the milk shake. All of sudden her thumb had great pain, and out of it shot a small (what looked like to her a rolled up feather!) She looked at her thumb and it has now like a paper cut on it, where the "thing" physically shot out of. Something (( very )) interesting, she'd in the past been diagnosed positive for having Babesia antigens and Hystoplasmosis. Vivi does not have these in her tests now! Which is extremely surprising to the doctors. She goes back to see these wonderful human beings that are doctors in 2 weeks....which I'll sure be one holding my breath to find out more of what they say. And thank you Vivi, it was wonderful talking with you and I hope you're feeling better today. Wamly, Toni
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Post by imblownaway on Aug 12, 2007 10:09:42 GMT -5
Thank you for posting Toni
I am in tears for us all right now. And Vivi thanks for sharing your story. And thank God for the doc.
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Post by morgellonsmoe1 on Aug 12, 2007 10:21:21 GMT -5
Hi Vivi: Let me start off by taking my hat off to you for your courage and thank you so much for sharing. I broke out in a head to toe spotted rash a few years back so itchy I carried a hair brush that I constantly scratched my entire body with .( though it was scabies ) went away on its own . Finished my nail tech license and then my eyes started going bad. and my teeth started rotting ( all symptoms I thought were other things. 6months later I bumped into things that were right there like door jams and I would get lost on the road and stuck in ditches . I thought "this is how dementia started . I was useless and in and out of hospitals cause I couldn't walk My legs just would not be communicating with my brain . I went through DX of stroke and then MS but the MS meds never made me feel anything but worse and then the lice that wouldn't die episode that made me run from a paid for home and be labeled crazy by every doctor including my Nero . I too felt the crawlies or something in my head . I would tell the doc it felt like popcorn was popping in my head . I have lost allot including my family and friends but you dear give me hope . Each time I feel nuts , I see a courageous person like you . I have a doc that is treating my morgellons and is open minded but we all do not know what to do . MRI's are being linked to a deadly liver problems but I had one a few months ago cause I woke up blind . I feel in my heart after talking with others that Morgellons is beyond anything ever seen , Please keep us posted and hats off !
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Post by prevenge on Aug 12, 2007 10:26:02 GMT -5
thank you for sharing vivi.
thanks for taking the time to help her toni.
so.. when her skin touched a dairy product .. the fiber emerged hmm..
jsut like you talking about using milk to bring things out.
looks like i'm going to have some Fun With Milk today.
-M
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Post by toni on Aug 12, 2007 10:33:31 GMT -5
Anytime . And yes, it was funny because "Vivi" said...oh your the one who's said about the milk. Prevenge, or anyone, if your skin is broken or open lesions, the milk works incredible. I'm only saying this to help you kill off what you can.
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Post by browncircles on Aug 12, 2007 11:37:42 GMT -5
Thank you so much vivi and toni. I needed some hope today.
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Post by flutterby on Aug 12, 2007 13:04:02 GMT -5
Hello My Friends, I recently had an MRI of the brain. No Dye...........Impression reads: There are a few tiny areas of increased signal within thhe periventricluar white matter on the flair and T2-weighted images noted. Appearance nonspeciific. This may reprenent early mild periventricular white matter small vessel ischemic change although other etologes cannot bre excluded. Foll up imaging as clincically warranted. God Bless, Love, Flutterby
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Post by toni on Aug 12, 2007 13:15:46 GMT -5
Flutterby, I'm sure not familar with any of this, so I looked up one of the words you'd mentioned. Very interesting. B vitamins too can cause this (rather lack of) and or hypertension. Here's a small article on this. Take care. www.dizziness-and-balance.com/disorders/central/pvm.htm
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Post by prevenge on Aug 12, 2007 14:56:35 GMT -5
The white matter is the tissue through which messages pass between different area of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves whilst the white matter represents the network cables connecting the computers together. The white-matter is white because of the fatty substance (myelin) that surrounds the nerve fibers (axons). This myelin is found in almost all long nerve fibers as the insulation is important for allowing the messages to pass quickly from place to place.from - en.wikipedia.org/wiki/White_matterso.. in essence he white matter is used to TRANSFER INFORMATION, rather than compute or store it. what would be the ultimate purpose in growing vastly disproportionate amounts of white matter in the human brain? to receive more information and transmit it, would be one logical interpretation of this fact. where then, is this extra white-matter going to recieve this evidently larger amount of information from? fiber-optic silicon wiring.... hmmmm... zombie-robots anyone? legally.. your body does not actually "belong" to you... you're a legally owned product of the Corporatoin called "The United States" and being a civilian, you are essentially by definition, an Employee. is this taking control of our vessels, our.. "bodies" ? I report.. YOU DECIDE! -M -M
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Post by belikewater on Aug 12, 2007 15:15:44 GMT -5
Thank you, viv. toni, you're an angel! I, too get clipped feather looking structures pop out of my pores on occasion. So weird. Please, toni, what state is viv in? Thank you, guys.
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