Aa
Hi from Santana8.. Well, now it's santana8isback
Hello to everyone, it's been too long.. I forgot all my log in info and had to create a new account. Some of you may remember me as Santana8.. I am at the four year mark since my attack.. go for new MRI 8 or 9 idk I lost count.. lol but anyhow so far no new lesions, no new attacks, Neuro is still saying it's ADEM and not MS.. I hope u all are doing good.. I've missed you all here!!
I'm still hangin in there lol Life just wont slow down for us to be sick will it? lol If u run or mayor u got my vote!! lol Going to be around.. forgot all my log in info had to create a new account under Santana8isback it said Santana8 was already taken.. lol wonder who that could be? lol I want my old name back but don't know how to get in but I'm workin on it till then I'll use this account:) Glad to talk to you I never forgot about u we were close and talked a lot:) I'm gonna stick around here.. talk soon
Santana
Santana
I was just looking at my friends list and wondered how you were doing not that long ago. I have missed you sooo much. I'm still in limboland as always. I'm thinking of running for mayor.lol
So glad to hear from you and see that you are hanging in there. Don't be a stranger.
Take Care
So glad to hear from you and see that you are hanging in there. Don't be a stranger.
Take Care
Forgot something..lol I believe I have a mild to moderate form of what is called Gerstmann's Syndrome.. It is a syndrome caused by lesions in the parietal lobes the left more so if I am remembering the literature correctly. It consist of a lists of specific deficeits including right-left confusion, which I have, Acalcula or Discalcula, inability to do simple mathmatics ( Discalcula ) being altered ability.. I have Discalcula.
Agraphia or Disgraphia.. I have disgraphia alterd ability to write
The other main symptom is finger Agnosia- inability to identify the names of the individual fingers.. I don't have this one but do have trouble with my right hand not feeling dominate any longer.
Also it can cause th exact field defect I have an Inferior Harmoneous Quadrantanopia, also known as " Pie On The Floor" Which is caused from a lesion deep in the Parietal lobe prob the left. I found this syndrome by cross referencing my individual deficeits with the parts of the brain that controls them. I mentioned " Gerstmann's Syndrome" to my neuro and he had heard of it and knew the four main symptoms but said he was going to research it some more.
Some children are born with Gerstmann's Syndrome..they can improve but usually do not get over it.. Adults who get this syndrome and it is accuired can. The literature I have read says that in adults who aquire Gerstmann's the deficeits usually deminish over time. This seems to fit my progress as well as the deficeits..
It takes great effort in concentration for me to tell right from left,, do calculating of any kind and to write.. the reading has improved but I believe reading so much online has acted as sort of a therapy in my reading and typing. Maybe this therapy will be able t help with the rest.
My neuro isn't worried about what is causing the specific deficeits such as to be able to name the syndrome.. I am because understanding what is effected could be the key to my recovery.. he says it's over..lol it isn't I still live with it daily and I want improvement in my functioning so I continue to research. Sometimes you have to get in there and get ur hands dirty along side your neuro and research the things he doesn't have time to do. If I hadn't done this I would have never known that the Peli Lens existed.. Just some things I've learned on my own about my own condition and deficeits..
Santana
Agraphia or Disgraphia.. I have disgraphia alterd ability to write
The other main symptom is finger Agnosia- inability to identify the names of the individual fingers.. I don't have this one but do have trouble with my right hand not feeling dominate any longer.
Also it can cause th exact field defect I have an Inferior Harmoneous Quadrantanopia, also known as " Pie On The Floor" Which is caused from a lesion deep in the Parietal lobe prob the left. I found this syndrome by cross referencing my individual deficeits with the parts of the brain that controls them. I mentioned " Gerstmann's Syndrome" to my neuro and he had heard of it and knew the four main symptoms but said he was going to research it some more.
Some children are born with Gerstmann's Syndrome..they can improve but usually do not get over it.. Adults who get this syndrome and it is accuired can. The literature I have read says that in adults who aquire Gerstmann's the deficeits usually deminish over time. This seems to fit my progress as well as the deficeits..
It takes great effort in concentration for me to tell right from left,, do calculating of any kind and to write.. the reading has improved but I believe reading so much online has acted as sort of a therapy in my reading and typing. Maybe this therapy will be able t help with the rest.
My neuro isn't worried about what is causing the specific deficeits such as to be able to name the syndrome.. I am because understanding what is effected could be the key to my recovery.. he says it's over..lol it isn't I still live with it daily and I want improvement in my functioning so I continue to research. Sometimes you have to get in there and get ur hands dirty along side your neuro and research the things he doesn't have time to do. If I hadn't done this I would have never known that the Peli Lens existed.. Just some things I've learned on my own about my own condition and deficeits..
Santana
I could never forget you all here you were my rock at a very scarey and uncertain period and I owe you all a lot. If it hadn't been for u all I know I would not have gotten the correct treatment by the right medical physicians. Your valuable information lead me straight to where I needed to be.
For those of u who don't know my story I had my one and only to date what I call " Attack " What my MS specialist calls " an auto-immune response to an unknown trigger" lol I laugh because truth is they don't know what happend with me. It happend suddenly while in a store on April 2, 2006, suddenly I couldn't think clearly( concentrate) and became very confused in my vision..
final restult 8 months later when they finaly believed I couldn't see and gave me a visual field test which showed a Harmoneous Quadrantanopia..translated to I was blind in one quarter of my field of vision in both sides of the brain.. yep the brain not the eyes!! MRI followed showed 15 or more white matter brain lesions, most of which were in the Corpu Calossum, Parietal and Occt lobes of my brain.
First Neuro said MS without even a bloodtest, based completely on MRI results alone, sent me home with Rebiff.. I got a second oppionion..bloodwork= normal..LP= Normal, no O banding.. Repeat MRI's every six months for the past four years have shown no new lesions, and I have had no clinical relapse that I am aware of to date.
Third neuro ( MS specialist) My choice..repeated the VEP that the first neuro sad was possitive.. second VEP normal, neuro questions that he first one was done correctly now.. says once possitive always shows evidence of having had ON.. says he see's no evidence of any ON ever.. All revoked potential testing = normal results as well
. He says he does not think I have MS but if I do it would have to be a benign case, but stilll he don't think It is MS. I received no IV steriods or oral steriods because it took 8 months to get MRI and that was out of the acute phase and too late to benefit me. So for the past four years I've been healing with no meds at all.
I can now read but still have some tracking problems and the blind area is no longer completely blind to me.. the latest visual field test two weeks ago shows very little improvment.. I see improvement tho.. the blind area is no longer completely blind but smokey looking, meaning I can now see that objects are there or moving but they look ghostly or transparent.
Neuro says he doesn't know if it is healing or my brain just adapting. Either way tho it is better for me yet not gone, still cannot drive safely.. still have 20/20 VA.
I now see a low vision specialist who has come to the conclusion that this is a perceptual deficeit.. cognitive in nature.. my eyes see's the picture perfect but my brain does not comprehend or is ignoring it all together. His treatment plan includes Vision Therapy, and a special drivers therapy course at the Helen Ross Rehab center in Knoxville, TN to evaluate my deficeits and try to rehabilitate me as a safe driver or determine if I have the ability to ever drive again.
What I'm doing.. I contacted a top scientist named Eli Peli at the Harvard Medical School in Boston MA.. because I research visual aides for Hemianopic patients.. he has invented a set of Prisms really the only known sucessful ones for Hemianopic patients like me.
He actually called me back himself..wow!! Told me of the only two vision specialist in the state of TN who had even ordered his testing kit.. guess what? one of them was my low vision specialist Dr. Gilliland in Knoxville.. the other was at Vanderbilt in Nashville 5 hours from me..
So I called up my low vision spcialist and asked him if he had tested me for the Peli Lens. He said no I didn't think your VFD was severe enough to need them.. I said I haven't driven a car in four years and I cannot walk through a store or crowd without being disoriented. I would say it's severe enough. So I convinced him to try, to test me for the Peli Lens.. that and the therapy is my next steps immediately.
These prisims are very expensive about 1,500.. I am seeking help thru the Tenn Dept Of Human Resources who may pay for them if I go through a course with a rehab councelor
My low vision specialist will test me by putting temporary press on prisms in glasses and sending me home for approx one month. If they are beneficial and I am proven a candidate then the real prisims will then be orded and and sent to his lab for a special tent to be placed on them to help me with light sensitivity.
The Peli Lens works by grabing objects with microscope from the non seeing field and shifting them over into the seeing field.. possible 20-40 degree improvement if they work for me. The Prisim coversthe entire lens and this means it would work at any angle of gaze. let's hope they work for me!! Well, as usual I have written a book. lol sorry about the legnth of this but lots of info to share. will keep updating on the therapy and the prisms..
Santana
For those of u who don't know my story I had my one and only to date what I call " Attack " What my MS specialist calls " an auto-immune response to an unknown trigger" lol I laugh because truth is they don't know what happend with me. It happend suddenly while in a store on April 2, 2006, suddenly I couldn't think clearly( concentrate) and became very confused in my vision..
final restult 8 months later when they finaly believed I couldn't see and gave me a visual field test which showed a Harmoneous Quadrantanopia..translated to I was blind in one quarter of my field of vision in both sides of the brain.. yep the brain not the eyes!! MRI followed showed 15 or more white matter brain lesions, most of which were in the Corpu Calossum, Parietal and Occt lobes of my brain.
First Neuro said MS without even a bloodtest, based completely on MRI results alone, sent me home with Rebiff.. I got a second oppionion..bloodwork= normal..LP= Normal, no O banding.. Repeat MRI's every six months for the past four years have shown no new lesions, and I have had no clinical relapse that I am aware of to date.
Third neuro ( MS specialist) My choice..repeated the VEP that the first neuro sad was possitive.. second VEP normal, neuro questions that he first one was done correctly now.. says once possitive always shows evidence of having had ON.. says he see's no evidence of any ON ever.. All revoked potential testing = normal results as well
. He says he does not think I have MS but if I do it would have to be a benign case, but stilll he don't think It is MS. I received no IV steriods or oral steriods because it took 8 months to get MRI and that was out of the acute phase and too late to benefit me. So for the past four years I've been healing with no meds at all.
I can now read but still have some tracking problems and the blind area is no longer completely blind to me.. the latest visual field test two weeks ago shows very little improvment.. I see improvement tho.. the blind area is no longer completely blind but smokey looking, meaning I can now see that objects are there or moving but they look ghostly or transparent.
Neuro says he doesn't know if it is healing or my brain just adapting. Either way tho it is better for me yet not gone, still cannot drive safely.. still have 20/20 VA.
I now see a low vision specialist who has come to the conclusion that this is a perceptual deficeit.. cognitive in nature.. my eyes see's the picture perfect but my brain does not comprehend or is ignoring it all together. His treatment plan includes Vision Therapy, and a special drivers therapy course at the Helen Ross Rehab center in Knoxville, TN to evaluate my deficeits and try to rehabilitate me as a safe driver or determine if I have the ability to ever drive again.
What I'm doing.. I contacted a top scientist named Eli Peli at the Harvard Medical School in Boston MA.. because I research visual aides for Hemianopic patients.. he has invented a set of Prisms really the only known sucessful ones for Hemianopic patients like me.
He actually called me back himself..wow!! Told me of the only two vision specialist in the state of TN who had even ordered his testing kit.. guess what? one of them was my low vision specialist Dr. Gilliland in Knoxville.. the other was at Vanderbilt in Nashville 5 hours from me..
So I called up my low vision spcialist and asked him if he had tested me for the Peli Lens. He said no I didn't think your VFD was severe enough to need them.. I said I haven't driven a car in four years and I cannot walk through a store or crowd without being disoriented. I would say it's severe enough. So I convinced him to try, to test me for the Peli Lens.. that and the therapy is my next steps immediately.
These prisims are very expensive about 1,500.. I am seeking help thru the Tenn Dept Of Human Resources who may pay for them if I go through a course with a rehab councelor
My low vision specialist will test me by putting temporary press on prisms in glasses and sending me home for approx one month. If they are beneficial and I am proven a candidate then the real prisims will then be orded and and sent to his lab for a special tent to be placed on them to help me with light sensitivity.
The Peli Lens works by grabing objects with microscope from the non seeing field and shifting them over into the seeing field.. possible 20-40 degree improvement if they work for me. The Prisim coversthe entire lens and this means it would work at any angle of gaze. let's hope they work for me!! Well, as usual I have written a book. lol sorry about the legnth of this but lots of info to share. will keep updating on the therapy and the prisms..
Santana
I have misssed you sooo much! You were such a strong part of this forum and I really noticed it when you left! Good to see you!
Quix
Quix
Hi Santana, I wondered where you were! Glad to see you back and glad to hear your condition is stable, that is very good news.
Hey! It's good to hear from you. I am so glad that you haven't shown any evidence of attacks--great news! I hope you're not having any new symptoms or feeling bad, too.
So happy to hear from you.
Deb
So happy to hear from you.
Deb
Hi there. Nice to see you back online, Miss you around here.
how are you feeling? Where have you been?
stick around OK..
wobbly
dx
how are you feeling? Where have you been?
stick around OK..
wobbly
dx
Holy CR AP!!!!!!!!!!! Is this really you!!!?????????
Nice to see you lady! It's been so long.
Yay! Attackless! How are you feeling?
(((hugs)))
shell
Nice to see you lady! It's been so long.
Yay! Attackless! How are you feeling?
(((hugs)))
shell
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