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prayerful always2 02-19-2010 08:46 PM

help???
 
Several months ago my neice started having headaches which ibuprophen controlled ,Several months later she had a/v hallucinations controlled by psych meds afew months later she experienced severe unrelenting headaches despite narcotics and meds administered by a neurologist over a few days they lessended but by that tiime her personality had changed from that of a college student to a child a very scared little girl who could barely read and used child like grammar.She also could not rember most of her previous life not even where she lived. mean while it was discovered she had seizures and they were treated. Her previous young adult personality returned with some memory .She still has trouble reading but can write like a college student only she can't even read everything she has written . No vision problems .Has had numerous mri's a mra and several eeg's as well as extensive labs.The previous a/v hallucinations were forgotten except for a little nervousness about one lingering but controlled fear. Psych meds were stopped when the headaches became bad 1 month ago no exsisting psych problems .but spontaneous stuttering has begun .Dr. are baffeled(neuro and psych.This young woman has never stuttered in her life. Some brain swelling was noted and treated .Memory still impaired can't remeber most of her life ,reading still impaired.Stroke,infection,rulled out as was some forms of encephalitis.Does this sound familar to anyone if so please comment Thank s and God Bless all of you.prayerful always2

pabb 02-22-2010 11:56 AM

Quote:

Originally Posted by prayerful always2 (Post 623718)
Several months ago my neice started having headaches which ibuprophen controlled ,Several months later she had a/v hallucinations controlled by psych meds afew months later she experienced severe unrelenting headaches despite narcotics and meds administered by a neurologist over a few days they lessended but by that tiime her personality had changed from that of a college student to a child a very scared little girl who could barely read and used child like grammar.She also could not rember most of her previous life not even where she lived. mean while it was discovered she had seizures and they were treated. Her previous young adult personality returned with some memory .She still has trouble reading but can write like a college student only she can't even read everything she has written . No vision problems .Has had numerous mri's a mra and several eeg's as well as extensive labs.The previous a/v hallucinations were forgotten except for a little nervousness about one lingering but controlled fear. Psych meds were stopped when the headaches became bad 1 month ago no exsisting psych problems .but spontaneous stuttering has begun .Dr. are baffeled(neuro and psych.This young woman has never stuttered in her life. Some brain swelling was noted and treated .Memory still impaired can't remeber most of her life ,reading still impaired.Stroke,infection,rulled out as was some forms of encephalitis.Does this sound familar to anyone if so please comment Thank s and God Bless all of you.prayerful always2

?illicit drug use; and Lyme disease..

dahlek 02-23-2010 07:51 PM

OH MY! THAT is all soo scary?
 
I would say it's time to look at your medical plan's 'preferred provider' book or web site and then see if you can get a second opinion from a different doc. Better sooner than later, of course.
There has to be a different set of eyes to see and listen to all the changes that have occurred to this child!
I cannot believe that vascular issues have been eliminated, nor infectious possibilities, nor neurologic ones.
A Lot is going to depend on her parent's insurance tho? IF in an HMO? Best to go back to the beginning to a GP and detail timing and severity of each change in this child.. Go from there. Don't ask for prior test results copies? Demand them! With those in hand you'll know what's been done, and maybe by reading the 'stickies' at the very top of this forum? You'll get a better handle on what to do. It's all complicated, confusing and usually in double-doctor-speak....but w/tests in hand and computer to look up the 'words' and the tests and what they all might or might not mean? Is key to getting some answers. IF it is affecting the neuro system? Soo many hundreds of different things can be the cause. It's like a tidal wave at first? But the more facts you have in hand to learn from? The better ideas you might have about what to do! Bless you and your neice in your search for help! So many here have been on that search, and I truly hope you get LUCKY right off the bat!
Do let us know how things are going, please! - Hugs and HOPE! :hug:'s - j

Koala77 02-23-2010 10:18 PM

Quote:

Originally Posted by pabb (Post 624611)
?illicit drug use; and Lyme disease..

Illicit drug use? Where did you get that from pabb?

I read the following:
Quote:

....she experienced severe unrelenting headaches despite narcotics and meds administered by a neurologist....
In my experience, narcotics ordered by and/or administered by, any type of medical practitioner is classed as legal, but the way you say it would make a large percentage of members here illicit drug users. Me included!

I think not!

prayerful always2 04-07-2010 09:41 PM

Quote:

Originally Posted by pabb (Post 624611)
?illicit drug use; and Lyme disease..

Spinal Fluid shows no white cells or bacteria so no Lyme disease ,all drug test neg except for those prescribed for the headaches .

prayerful always2 04-07-2010 09:51 PM

Quote:

Originally Posted by dahlek (Post 625208)
I would say it's time to look at your medical plan's 'preferred provider' book or web site and then see if you can get a second opinion from a different doc. Better sooner than later, of course.
There has to be a different set of eyes to see and listen to all the changes that have occurred to this child!
I cannot believe that vascular issues have been eliminated, nor infectious possibilities, nor neurologic ones.
A Lot is going to depend on her parent's insurance tho? IF in an HMO? Best to go back to the beginning to a GP and detail timing and severity of each change in this child.. Go from there. Don't ask for prior test results copies? Demand them! With those in hand you'll know what's been done, and maybe by reading the 'stickies' at the very top of this forum? You'll get a better handle on what to do. It's all complicated, confusing and usually in double-doctor-speak....but w/tests in hand and computer to look up the 'words' and the tests and what they all might or might not mean? Is key to getting some answers. IF it is affecting the neuro system? Soo many hundreds of different things can be the cause. It's like a tidal wave at first? But the more facts you have in hand to learn from? The better ideas you might have about what to do! Bless you and your neice in your search for help! So many here have been on that search, and I truly hope you get LUCKY right off the bat!
Do let us know how things are going, please! - Hugs and HOPE! :hug:'s - j

WE are still searching for anwsers but my neice is recovering Praise God ! Some amnesia persists as does the stuttering and her personality is a little different but she is doing great she attends speech and testing shows she is where she was pre illness cognitively .Therapy will start soon to help with her memory.All drug test were neg. and spinal fluid at the time showed no bacteria or white cells .Thanks for your help and we will continue to search for anwsers God continue to Bless You All PA2

Rrae 04-07-2010 10:52 PM

Thank you for that Koala!
 
Quote:

Originally Posted by Koala77 (Post 625270)
Illicit drug use? Where did you get that from pabb?

I read the following:


In my experience, narcotics ordered by and/or administered by, any type of medical practitioner is classed as legal, but the way you say it would make a large percentage of members here illicit drug users. Me included!

I think not!

Thank you for stepping in Koala....:) when i read that, i thought 'ouch'

........wasn't a very 'tactful' way to welcome a new member seeking help?!
I felt badly for "Prayerful always"....:(

This must be a very frightening thing to be going through!
My prayers are with you and your family
Rae
:hug:

pabb 04-08-2010 09:41 AM

... but something that needs to be considered whenever there is sever MS change.....especially in the older adolescent.....someone so sick, sometimes the niceties go by the wayside, in consideration of finding the answers necessary to treat.....as you can see by the OPs answer the docs also thought of this and tested for it.

dahlek 04-11-2010 05:14 PM

Two things to try and get tested for?
 
And I almost hate to say them out loud, but you need to know if there will be later 'residuals' are: Meningitis and some forms of encaphalitis. These are sneaky and can be picked up almost anywhere. They also can and do cause changes such as you describe.
Testing involves taking a lot of blood and doing special titre tests to see if there is a 'presence' of one of these infections or the other. Usually treatments with drugs and varied therapies can help immensely when caught in time, and it sounds like it was.
I know of someone who got it. The whole experience was horrid and yet they go on and get by. Meyloencephalitis....
Good hopes and hugs for better to best progress! - j


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