Neurological Disorders - Sudden onset of neuro problems, no answers

Author

Sudden onset of neuro problems, no answers - Please Help!

Marty

2006-05-09, 6:30 pm

My fiancé got sick at the end of December. We thought she had the flu. After
six days she started feeling better, but her headache got worse. She
described it as feeling like cold water was running over her head as if she
was in the shower, except the cold water was 'rivulets' of pain'. The pain
went from her forehead, across her scalp down to the base of the back of her
neck. The pain is constant - everyday. Better in the morning and getting
worse by evening. Mid-January she got a stiff neck so bad I had to follow
her home from work to make sure she would be OK. The stiff neck went away,
but the headache grew even worse. A friend of hers at a clinic asked her to
follow her fingers with her eyes and she could not do it. She did not even
realize that she was not moving her eyes. By February it became so bad I
took her to the ER. They ran blood tests, MRI and LP. Everything was
'normal' and the doctor suggested a neurologist because he did the 'follow
my finger' thing and she told him she was even though it was clear to us
that she was not. So we found a neurologist and he looked at her MRI and
said there was nothing wrong with her and told her to come back in a month
if she still felt bad. He gave her Valium and sent her on her way. Valium
did not begin to help her headache, but she dealt with it the best she
could. On March 8 she lost her peripheral vision. On the 9th she started
having trouble swallowing, on the 10th she lost her facial muscles - she
could not smile, stick out her tongue or suck on a straw. I took her to the
ER again and she was having difficulty walking and her right eye was getting
droopy. They gave her Imatrex and she thought her head was going to
explode - it had the opposite effect on her. By the next day she threw up
for 8 hours, lost her ability to speak and had to write me notes to
communicate. After about two hours she could not open her eyes at all. She
was able to open her eyes and speak again about five hours later. She still
had her other symptoms that seemed to get worse as the day went on. She was
released from the hospital on the 15th with no diagnosis, even though they
ran every test they could think of. She suffered for two days at home and I
took her back to the hospital again on the 17th. They put her in ICU for
four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, encephalitis
and a ton of other things I can't pronounce - all results were negative.
They released her on the 22nd because the insurance company said 'diagnose
her or let her go'. Before she left she still had many tests that were
pending. Her neurologist suggested she might be depressed. That really upset
her because she has other things to do than hang out in the hospital. Her
hospital doctor said the neurologist was just at a loss as to the cause so
he blamed it on her. A few days later the hospital doctor called and told
her she had Rickettsia. She took the lab results to her PCP and he told her
no test for Rickettsia was ever done. Her endocrinologist said everything
was normal and suggested yet another neurologist. We sent the MRI's to a
neurosurgeon and said he found nothing out of the ordinary. Now we don't
know who or what to believe. She can deal with any diagnosis, but not
knowing is almost as hard to live with as her headache. It is not a
migraine, tension, cluster etc. Her head gets so cold that she will wear a
cap on a warm day. She has trouble walking almost every other day. Her legs
just won't work and sometimes she can't even feel them. We're running out of
ideas about where to turn for answers - no one with a degree in medicine is
managing her case. I have done a billions searches for these symptoms and
even though she has a few, not one disease fits them all. If anyone knows
how I can solve this please help. Thank you.
If this is not the correct newsgroup to post this to please let me know.

Ronnie

2006-05-10, 1:29 am

I dont have any answers for you but along with this
newsgroup you might try alt.support.headache.migraine
group. Good luck in your search for answers for her..

--
Ronnie
--
*When one candle burns out..
Another is lit*
"Marty" <dont@spam.me> wrote in message
news:_bKdnQPg6sNsi_zZRVn-jA@gvtc.com...
> My fiancé got sick at the end of December. We thought she had the flu.
> After six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if
> she was in the shower, except the cold water was 'rivulets' of pain'. The
> pain went from her forehead, across her scalp down to the base of the back
> of her neck. The pain is constant - everyday. Better in the morning and
> getting worse by evening. Mid-January she got a stiff neck so bad I had to
> follow her home from work to make sure she would be OK. The stiff neck
> went away, but the headache grew even worse. A friend of hers at a clinic
> asked her to follow her fingers with her eyes and she could not do it. She
> did not even realize that she was not moving her eyes. By February it
> became so bad I took her to the ER. They ran blood tests, MRI and LP.
> Everything was 'normal' and the doctor suggested a neurologist because he
> did the 'follow my finger' thing and she told him she was even though it
> was clear to us that she was not. So we found a neurologist and he looked
> at her MRI and said there was nothing wrong with her and told her to come
> back in a month if she still felt bad. He gave her Valium and sent her on
> her way. Valium did not begin to help her headache, but she dealt with it
> the best she could. On March 8 she lost her peripheral vision. On the 9th
> she started having trouble swallowing, on the 10th she lost her facial
> muscles - she could not smile, stick out her tongue or suck on a straw. I
> took her to the ER again and she was having difficulty walking and her
> right eye was getting droopy. They gave her Imatrex and she thought her
> head was going to explode - it had the opposite effect on her. By the next
> day she threw up for 8 hours, lost her ability to speak and had to write
> me notes to communicate. After about two hours she could not open her eyes
> at all. She was able to open her eyes and speak again about five hours
> later. She still had her other symptoms that seemed to get worse as the
> day went on. She was released from the hospital on the 15th with no
> diagnosis, even though they ran every test they could think of. She
> suffered for two days at home and I took her back to the hospital again on
> the 17th. They put her in ICU for four days with more blood/urine tests,
> MRI, CAT, LP etc. They tested for myasthenia gravis, multiple sclerosis,
> guillian-barre, lyme's, encephalitis and a ton of other things I can't
> pronounce - all results were negative. They released her on the 22nd
> because the insurance company said 'diagnose her or let her go'. Before
> she left she still had many tests that were pending. Her neurologist
> suggested she might be depressed. That really upset her because she has
> other things to do than hang out in the hospital. Her hospital doctor said
> the neurologist was just at a loss as to the cause so he blamed it on her.
> A few days later the hospital doctor called and told her she had
> Rickettsia. She took the lab results to her PCP and he told her no test
> for Rickettsia was ever done. Her endocrinologist said everything was
> normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her
> legs just won't work and sometimes she can't even feel them. We're running
> out of ideas about where to turn for answers - no one with a degree in
> medicine is managing her case. I have done a billions searches for these
> symptoms and even though she has a few, not one disease fits them all. If
> anyone knows how I can solve this please help. Thank you.
> If this is not the correct newsgroup to post this to please let me know.
>
>

OldGoat

2006-05-10, 1:29 am

Dear Marty,

We get our share of strange symptoms and maladies, but this is a new one.
The only thing that can be said for certain is that you haven't hit upon the
right neurologist yet. Definitely try the headache group as Ronnie has
suggested and see if they can lead you to a closer diagnosis. One would
think the diagnosis would be easier now since they not only have the
symptoms, but a drug that aggravates those symptoms.
Being a professional patient is a long way from being a health care
professional, so while I have a couple thoughts on what it may be they are
of the catch-all variety and would be inappropriate to start the guessing
games at this point. Find yourself a really good neurologist or
neurosurgeon. Ask the doctors if it was them with the problem who would they
go see. Don't put much faith in the ER docs and their opinions, they're in
to quantity not quality.
You don't say where you're from, which is fine, but if you're in the
Washington D.C. area, I can hook you up with a decent neurosurgeon. Do not
hesitate to ask. He's not in to Rxing pain pills, his view is when he's done
with you, they shouldn't be needed.
There is nothing worse than having an ailment with no name to place on it.
It's very frustrating and depressing, so the anti depressant meds may not
have been totally out of line. The actions of these drugs are very subtle
and you don't really notice them doing a thing... till you stop taking them
and wonder why life sucks worse now than before with the drug.
It's no picnic for you either. Take care of yourself both mentally and
physically, so you can be her "rock". It's easy to get worn down to nothing
if you don't look out for yourself too. Never think it's being selfish.

Hang in there and best of luck--og

"Marty" <dont@spam.me> wrote in message
news:_bKdnQPg6sNsi_zZRVn-jA@gvtc.com...
> My fiancé got sick at the end of December. We thought she had the flu.
> After six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if
> she was in the shower, except the cold water was 'rivulets' of pain'. The
> pain went from her forehead, across her scalp down to the base of the back
> of her neck. The pain is constant - everyday. Better in the morning and
> getting worse by evening. Mid-January she got a stiff neck so bad I had to
> follow her home from work to make sure she would be OK. The stiff neck
> went away, but the headache grew even worse. A friend of hers at a clinic
> asked her to follow her fingers with her eyes and she could not do it. She
> did not even realize that she was not moving her eyes. By February it
> became so bad I took her to the ER. They ran blood tests, MRI and LP.
> Everything was 'normal' and the doctor suggested a neurologist because he
> did the 'follow my finger' thing and she told him she was even though it
> was clear to us that she was not. So we found a neurologist and he looked
> at her MRI and said there was nothing wrong with her and told her to come
> back in a month if she still felt bad. He gave her Valium and sent her on
> her way. Valium did not begin to help her headache, but she dealt with it
> the best she could. On March 8 she lost her peripheral vision. On the 9th
> she started having trouble swallowing, on the 10th she lost her facial
> muscles - she could not smile, stick out her tongue or suck on a straw. I
> took her to the ER again and she was having difficulty walking and her
> right eye was getting droopy. They gave her Imatrex and she thought her
> head was going to explode - it had the opposite effect on her. By the next
> day she threw up for 8 hours, lost her ability to speak and had to write
> me notes to communicate. After about two hours she could not open her eyes
> at all. She was able to open her eyes and speak again about five hours
> later. She still had her other symptoms that seemed to get worse as the
> day went on. She was released from the hospital on the 15th with no
> diagnosis, even though they ran every test they could think of. She
> suffered for two days at home and I took her back to the hospital again on
> the 17th. They put her in ICU for four days with more blood/urine tests,
> MRI, CAT, LP etc. They tested for myasthenia gravis, multiple sclerosis,
> guillian-barre, lyme's, encephalitis and a ton of other things I can't
> pronounce - all results were negative. They released her on the 22nd
> because the insurance company said 'diagnose her or let her go'. Before
> she left she still had many tests that were pending. Her neurologist
> suggested she might be depressed. That really upset her because she has
> other things to do than hang out in the hospital. Her hospital doctor said
> the neurologist was just at a loss as to the cause so he blamed it on her.
> A few days later the hospital doctor called and told her she had
> Rickettsia. She took the lab results to her PCP and he told her no test
> for Rickettsia was ever done. Her endocrinologist said everything was
> normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her
> legs just won't work and sometimes she can't even feel them. We're running
> out of ideas about where to turn for answers - no one with a degree in
> medicine is managing her case. I have done a billions searches for these
> symptoms and even though she has a few, not one disease fits them all. If
> anyone knows how I can solve this please help. Thank you.
> If this is not the correct newsgroup to post this to please let me know.
>
>

Susan

2006-06-04, 9:34 am

x-no-archive: yes

Marty wrote:
> My fiancé got sick at the end of December. We thought she had the flu. After
> six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if she
> was in the shower, except the cold water was 'rivulets' of pain'. The pain
> went from her forehead, across her scalp down to the base of the back of her
> neck. The pain is constant - everyday. Better in the morning and getting
> worse by evening. Mid-January she got a stiff neck so bad I had to follow
> her home from work to make sure she would be OK. The stiff neck went away,
> but the headache grew even worse. A friend of hers at a clinic asked her to
> follow her fingers with her eyes and she could not do it. She did not even
> realize that she was not moving her eyes. By February it became so bad I
> took her to the ER. They ran blood tests, MRI and LP. Everything was
> 'normal' and the doctor suggested a neurologist because he did the 'follow
> my finger' thing and she told him she was even though it was clear to us
> that she was not. So we found a neurologist and he looked at her MRI and
> said there was nothing wrong with her and told her to come back in a month
> if she still felt bad. He gave her Valium and sent her on her way. Valium
> did not begin to help her headache, but she dealt with it the best she
> could. On March 8 she lost her peripheral vision. On the 9th she started
> having trouble swallowing, on the 10th she lost her facial muscles - she
> could not smile, stick out her tongue or suck on a straw. I took her to the
> ER again and she was having difficulty walking and her right eye was getting
> droopy. They gave her Imatrex and she thought her head was going to
> explode - it had the opposite effect on her. By the next day she threw up
> for 8 hours, lost her ability to speak and had to write me notes to
> communicate. After about two hours she could not open her eyes at all. She
> was able to open her eyes and speak again about five hours later. She still
> had her other symptoms that seemed to get worse as the day went on. She was
> released from the hospital on the 15th with no diagnosis, even though they
> ran every test they could think of. She suffered for two days at home and I
> took her back to the hospital again on the 17th. They put her in ICU for
> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, encephalitis
> and a ton of other things I can't pronounce - all results were negative.
> They released her on the 22nd because the insurance company said 'diagnose
> her or let her go'. Before she left she still had many tests that were
> pending. Her neurologist suggested she might be depressed. That really upset
> her because she has other things to do than hang out in the hospital. Her
> hospital doctor said the neurologist was just at a loss as to the cause so
> he blamed it on her. A few days later the hospital doctor called and told
> her she had Rickettsia. She took the lab results to her PCP and he told her
> no test for Rickettsia was ever done. Her endocrinologist said everything
> was normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her legs
> just won't work and sometimes she can't even feel them. We're running out of
> ideas about where to turn for answers - no one with a degree in medicine is
> managing her case. I have done a billions searches for these symptoms and
> even though she has a few, not one disease fits them all. If anyone knows
> how I can solve this please help. Thank you.
> If this is not the correct newsgroup to post this to please let me know.
>
>

Her symptoms are certainly consistent with rickettsia as I've
experienced mixed tick borne diseases. Having negative test results
does not mean she doesn't have tick borne diseases. There just aren't
any clinically reliable serological tests for these.

In my case, I'd been disabled for several years before my Lyme and
ehrlichiosis were discovered.

You may want to check Medline to research symptoms of neuroborreliosos,
ehrlichiosos, and other rickettsiae. The sooner treatment is
undertaken, the better the outcome. If she has these infections
(multiple diseases from a tick bite is a common scenario), her symptoms
indicate that they are disseminated.

At various points in my years of illness prior to treatment, I've
experienced most of what you describe.

Susan

Susan

2006-06-04, 9:34 am

x-no-archive: yes

Susan wrote:

> Her symptoms are certainly consistent with rickettsia as I've
> experienced mixed tick borne diseases. Having negative test results
> does not mean she doesn't have tick borne diseases. There just aren't
> any clinically reliable serological tests for these.
>
> In my case, I'd been disabled for several years before my Lyme and
> ehrlichiosis were discovered.
>
> You may want to check Medline to research symptoms of neuroborreliosos,
> ehrlichiosos, and other rickettsiae. The sooner treatment is
> undertaken, the better the outcome. If she has these infections
> (multiple diseases from a tick bite is a common scenario), her symptoms
> indicate that they are disseminated.
>
> At various points in my years of illness prior to treatment, I've
> experienced most of what you describe.
>
> Susan

Er, those would be "neuroborreliosIs and ehrlichiosIs." I tested + for
Lyme and two strains of ehrlichiosis after years of disability and
several months of antibiotic treatment.

Susan

Amy Sargent

2006-06-09, 2:29 am

(Remove "spamfree" to reply individually.)

Since your PCP has pointed out that no test for Rickettsia was done, did he
order a test for Rickettsia? Can he order a test for Rickettsia?

Did they look for subdural effusion? meningitis?

I have been depressed enough to feel as though there were cold molasses
running through my head in much the same way she describes her rivulets of
pain. (Sort of like having it poured on my head, only on an inside layer of
my head if that makes sense.) Migraines and depression are related. I
don't think that's what this is, but it could be the source of the
hypothesis that she was depressed.

http://en.wikipedia.org/wiki/Cranial_nerves (and pages easily navigated
from there) (looking at the symptom of losing one's facial muscles) The
trigeminal nerve controls most of the face. There seem to be a couple other
facially related cranial nerves. Was a simple/standard set of cranial-nerve
testing done?

I have been dealing with the workers'-comp system since March 1st. My sick
leave has been whittled down to something like 37 hours, and I'm frantic;
but I managed to get an idiot doctor fired after he wrote in my chart that I
had exhibited "Waddell signs" (to be brief, this is an accusation of
malingering; Dr. Waddell did not intend for the signs to be used in this
way, and the miscreant ordered an X-ray on the wrong arm, so he's an idiot
anyway). So it is possible, with proper homework, to convince people in the
medical profession that there really could be something they have
overlooked.

I am leaving the included message intact in case someone with a more
comprehensive answer happens across the post after the original message has
disappeared from the server.

"Marty" wrote

> My fiancé got sick at the end of December. We thought she had the flu.
After
> six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if
she
> was in the shower, except the cold water was 'rivulets' of pain'. The pain
> went from her forehead, across her scalp down to the base of the back of
her
> neck. The pain is constant - everyday. Better in the morning and getting
> worse by evening. Mid-January she got a stiff neck so bad I had to follow
> her home from work to make sure she would be OK. The stiff neck went away,
> but the headache grew even worse. A friend of hers at a clinic asked her
to
> follow her fingers with her eyes and she could not do it. She did not even
> realize that she was not moving her eyes. By February it became so bad I
> took her to the ER. They ran blood tests, MRI and LP. Everything was
> 'normal' and the doctor suggested a neurologist because he did the 'follow
> my finger' thing and she told him she was even though it was clear to us
> that she was not. So we found a neurologist and he looked at her MRI and
> said there was nothing wrong with her and told her to come back in a month
> if she still felt bad. He gave her Valium and sent her on her way. Valium
> did not begin to help her headache, but she dealt with it the best she
> could. On March 8 she lost her peripheral vision. On the 9th she started
> having trouble swallowing, on the 10th she lost her facial muscles - she
> could not smile, stick out her tongue or suck on a straw. I took her to
the
> ER again and she was having difficulty walking and her right eye was
getting
> droopy. They gave her Imatrex and she thought her head was going to
> explode - it had the opposite effect on her. By the next day she threw up
> for 8 hours, lost her ability to speak and had to write me notes to
> communicate. After about two hours she could not open her eyes at all. She
> was able to open her eyes and speak again about five hours later. She
still
> had her other symptoms that seemed to get worse as the day went on. She
was
> released from the hospital on the 15th with no diagnosis, even though they
> ran every test they could think of. She suffered for two days at home and
I
> took her back to the hospital again on the 17th. They put her in ICU for
> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's,
encephalitis
> and a ton of other things I can't pronounce - all results were negative.
> They released her on the 22nd because the insurance company said 'diagnose
> her or let her go'. Before she left she still had many tests that were
> pending. Her neurologist suggested she might be depressed. That really
upset
> her because she has other things to do than hang out in the hospital. Her
> hospital doctor said the neurologist was just at a loss as to the cause so
> he blamed it on her. A few days later the hospital doctor called and told
> her she had Rickettsia. She took the lab results to her PCP and he told
her
> no test for Rickettsia was ever done. Her endocrinologist said everything
> was normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her
legs
> just won't work and sometimes she can't even feel them. We're running out
of
> ideas about where to turn for answers - no one with a degree in medicine
is
> managing her case. I have done a billions searches for these symptoms and
> even though she has a few, not one disease fits them all. If anyone knows
> how I can solve this please help. Thank you.
> If this is not the correct newsgroup to post this to please let me know.