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Home > Archive > Lupus Support > December 2004 > In Need Support
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| Lassy Lass 2004-12-16, 9:24 am |
| I had a appointment with another neuro yesterday, via satellite. She
told me I present symptoms of both ms and cns lupus. She ordered the
test I had been dreading. She ordered a lumbar puncture.
I had a lumbar puncture done 11 yrs ago due to a headache so bad I was
incoherent. It was before anyone knew I had lupus, anyways they did not
numb me or anything and they missed the first time so they had to do it
again and the second time they did not numb me either. It hurt so bad I
thought I was going to pass out, I was screaming as loud as I could
hoping they would pull the needle or what ever it was out of my back,
and I swore I would never have it done again. It traumatized me that
much.
I told the neuro of my experience, and she said I have to have it done
so they can get me the treatment I need.
The neuro is also questioning why my rhummey is not treating my lupus
more aggressively. I was on that plaquenil but because I suffered
horrid headaches he took me off it it.
Now my rhummey does not want me on any type of chemo because I have no
spleen, unless it is life threatening.
The other neuro I was seeing I call him the mean one has had me on 3,000
mg of keppra a day, and seeing how no one knows why I even take it, this
neuro wants me off of it. Which is totally fine with me, those pills
are huge and taking six of em a day is not fun.
My reg doc was in the room with me, so the neuro had my doc do some
tests, like pretending I am walking on a straight line, she had me stand
up and hold my arms up, I flunked the memory test. She tested the
reflexes on my legs and arms and I had no reflexes on my right side at
all then my doc flashed this light into my eyes I am not sure what test
she was doing but she told the neuro she would have to dialate my eyes.
Neuro told me that ms and cns lupus are very serious and that I will
need to get treated right away. That scared me. Sometimes I feel like
a ticking time bomb. I was so upset when I left I got sick. After the
neuro was done seeing me she told me to leave the room and that she
needed to talk with my reg doc in private. The nurse walked me out of
the room so I asked her do I wait in the lobby or go home or what she
said she didn't know so I just went home. I had alot of questions for
my doctor and no one even told me when to get a follow up.
And the lumbar puncture I am scared I am going to go to the hospital see
the needle and say I am outta here and freak out. My anxiety level is
so high right now, I am scared plumb to death.
And if neuro is right and I have the cns lupus and I have to be on
chemo, will I be able to go outside, shopping, will I loose all my hair.
Will I have to stay in doors all the time so I don't risk catching a
virus or getting sick? My girls school plays, will I be able to go to
them? These are some of the questions I have and wanted to ask my
doctor. My reg doc is really cool, she is not a rhummey or a neuro just
a reg md but to me she plays all three roles my rhummey does not consult
with neuro and when he sends reports to my reg doc its a miracle. I
also have this cognitive thing going on witch neuro suspects is from a
cns lupus involvement. If anyone can please help or offer support
please, let me know. Neuro also said I have to have neuro tests
preformed and I need to see a therapist. Thanks in advance
(((((((((hugs)))))) Melody
| |
| Stephanie Townsend 2004-12-16, 9:24 am |
| Oh Melody!
I haven't posted in awhile, but I was so upset by your post I had to write
to tell you that you are in my prayers. I can only imagine how this is all
very frightening and overwhelming. I have not had experience with anything
you are talking about except that I have had MANY spinal taps due to another
condition I have. I know how terrifying they can be. My first one was pretty
horrendous as well -- an internist was doing it and nicked the nerves and it
was quite painful. However -- to give you some hope -- since then I have had
a number of needles in the back/spinals and NONE were like the first. From
then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an
anesthesiologist as well) to do my spinal taps. They numb with lidocaine,
which feels like a small bee sting in the back (not nice but bearable) and
then the needle going in feels like a dull to moderate ache. That is all you
should feel if a good anesthesiologist is doing it. I know each of us senses
pain differently -- but I swear the lead up is worse than the actual event.
You may want to ask if you can have someone you trust with you to hold your
hand and distract you through the procedure. Many times only a nurse is
allowed to be there -- but I would express your fears to her and ask her to
be the support -- someones hand to squeeze and someone to talk you through
it. And lastly, I have found that deep breathing helps -- I take a deep
breath right before the first needle goes in -- and I breath out hard
through my mouth with pursed lips during the initial sting of pain (kinda
like labor breathing!). Then I do slow controlled breaths (in through nose,
out through pursed lips) during the rest when there is the aching. This
helps relax your muscles and takes down on the pain. And lastly, one time I
had way too many needles stuck in my back and I broke down and cried to my
doc and he ordered Adivan to relax me before the procedure. This may be an
option for you.
I am so sorry that you must endure all of this. Please keep us updated on
how you are doing. Let me know if there is anything else I can tell you
about surviving spinal taps. Let us know when it is scheduled so we can all
be sending prayers your way on that day.
Stephanie
"Lassy Lass" <MelodyMansker@webtv.net> wrote in message
news:23442-41BF5224-15@storefull-3218.bay.webtv.net...
>I had a appointment with another neuro yesterday, via satellite. She
> told me I present symptoms of both ms and cns lupus. She ordered the
> test I had been dreading. She ordered a lumbar puncture.
>
> I had a lumbar puncture done 11 yrs ago due to a headache so bad I was
> incoherent. It was before anyone knew I had lupus, anyways they did not
> numb me or anything and they missed the first time so they had to do it
> again and the second time they did not numb me either. It hurt so bad I
> thought I was going to pass out, I was screaming as loud as I could
> hoping they would pull the needle or what ever it was out of my back,
> and I swore I would never have it done again. It traumatized me that
> much.
>
> I told the neuro of my experience, and she said I have to have it done
> so they can get me the treatment I need.
>
> The neuro is also questioning why my rhummey is not treating my lupus
> more aggressively. I was on that plaquenil but because I suffered
> horrid headaches he took me off it it.
>
> Now my rhummey does not want me on any type of chemo because I have no
> spleen, unless it is life threatening.
>
> The other neuro I was seeing I call him the mean one has had me on 3,000
> mg of keppra a day, and seeing how no one knows why I even take it, this
> neuro wants me off of it. Which is totally fine with me, those pills
> are huge and taking six of em a day is not fun.
>
> My reg doc was in the room with me, so the neuro had my doc do some
> tests, like pretending I am walking on a straight line, she had me stand
> up and hold my arms up, I flunked the memory test. She tested the
> reflexes on my legs and arms and I had no reflexes on my right side at
> all then my doc flashed this light into my eyes I am not sure what test
> she was doing but she told the neuro she would have to dialate my eyes.
>
> Neuro told me that ms and cns lupus are very serious and that I will
> need to get treated right away. That scared me. Sometimes I feel like
> a ticking time bomb. I was so upset when I left I got sick. After the
> neuro was done seeing me she told me to leave the room and that she
> needed to talk with my reg doc in private. The nurse walked me out of
> the room so I asked her do I wait in the lobby or go home or what she
> said she didn't know so I just went home. I had alot of questions for
> my doctor and no one even told me when to get a follow up.
>
> And the lumbar puncture I am scared I am going to go to the hospital see
> the needle and say I am outta here and freak out. My anxiety level is
> so high right now, I am scared plumb to death.
>
> And if neuro is right and I have the cns lupus and I have to be on
> chemo, will I be able to go outside, shopping, will I loose all my hair.
> Will I have to stay in doors all the time so I don't risk catching a
> virus or getting sick? My girls school plays, will I be able to go to
> them? These are some of the questions I have and wanted to ask my
> doctor. My reg doc is really cool, she is not a rhummey or a neuro just
> a reg md but to me she plays all three roles my rhummey does not consult
> with neuro and when he sends reports to my reg doc its a miracle. I
> also have this cognitive thing going on witch neuro suspects is from a
> cns lupus involvement. If anyone can please help or offer support
> please, let me know. Neuro also said I have to have neuro tests
> preformed and I need to see a therapist. Thanks in advance
> (((((((((hugs)))))) Melody
>
| |
| Stephanie Townsend 2004-12-16, 9:24 am |
| Oh Melody!
I haven't posted in awhile, but I was so upset by your post I had to write
to tell you that you are in my prayers. I can only imagine how this is all
very frightening and overwhelming. I have not had experience with anything
you are talking about except that I have had MANY spinal taps due to another
condition I have. I know how terrifying they can be. My first one was pretty
horrendous as well -- an internist was doing it and nicked the nerves and it
was quite painful. However -- to give you some hope -- since then I have had
a number of needles in the back/spinals and NONE were like the first. From
then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an
anesthesiologist as well) to do my spinal taps. They numb with lidocaine,
which feels like a small bee sting in the back (not nice but bearable) and
then the needle going in feels like a dull to moderate ache. That is all you
should feel if a good anesthesiologist is doing it. I know each of us senses
pain differently -- but I swear the lead up is worse than the actual event.
You may want to ask if you can have someone you trust with you to hold your
hand and distract you through the procedure. Many times only a nurse is
allowed to be there -- but I would express your fears to her and ask her to
be the support -- someones hand to squeeze and someone to talk you through
it. And lastly, I have found that deep breathing helps -- I take a deep
breath right before the first needle goes in -- and I breath out hard
through my mouth with pursed lips during the initial sting of pain (kinda
like labor breathing!). Then I do slow controlled breaths (in through nose,
out through pursed lips) during the rest when there is the aching. This
helps relax your muscles and takes down on the pain. And lastly, one time I
had way too many needles stuck in my back and I broke down and cried to my
doc and he ordered Adivan to relax me before the procedure. This may be an
option for you.
I am so sorry that you must endure all of this. Please keep us updated on
how you are doing. Let me know if there is anything else I can tell you
about surviving spinal taps. Let us know when it is scheduled so we can all
be sending prayers your way on that day.
Stephanie
"Lassy Lass" <MelodyMansker@webtv.net> wrote in message
news:23442-41BF5224-15@storefull-3218.bay.webtv.net...
>I had a appointment with another neuro yesterday, via satellite. She
> told me I present symptoms of both ms and cns lupus. She ordered the
> test I had been dreading. She ordered a lumbar puncture.
>
> I had a lumbar puncture done 11 yrs ago due to a headache so bad I was
> incoherent. It was before anyone knew I had lupus, anyways they did not
> numb me or anything and they missed the first time so they had to do it
> again and the second time they did not numb me either. It hurt so bad I
> thought I was going to pass out, I was screaming as loud as I could
> hoping they would pull the needle or what ever it was out of my back,
> and I swore I would never have it done again. It traumatized me that
> much.
>
> I told the neuro of my experience, and she said I have to have it done
> so they can get me the treatment I need.
>
> The neuro is also questioning why my rhummey is not treating my lupus
> more aggressively. I was on that plaquenil but because I suffered
> horrid headaches he took me off it it.
>
> Now my rhummey does not want me on any type of chemo because I have no
> spleen, unless it is life threatening.
>
> The other neuro I was seeing I call him the mean one has had me on 3,000
> mg of keppra a day, and seeing how no one knows why I even take it, this
> neuro wants me off of it. Which is totally fine with me, those pills
> are huge and taking six of em a day is not fun.
>
> My reg doc was in the room with me, so the neuro had my doc do some
> tests, like pretending I am walking on a straight line, she had me stand
> up and hold my arms up, I flunked the memory test. She tested the
> reflexes on my legs and arms and I had no reflexes on my right side at
> all then my doc flashed this light into my eyes I am not sure what test
> she was doing but she told the neuro she would have to dialate my eyes.
>
> Neuro told me that ms and cns lupus are very serious and that I will
> need to get treated right away. That scared me. Sometimes I feel like
> a ticking time bomb. I was so upset when I left I got sick. After the
> neuro was done seeing me she told me to leave the room and that she
> needed to talk with my reg doc in private. The nurse walked me out of
> the room so I asked her do I wait in the lobby or go home or what she
> said she didn't know so I just went home. I had alot of questions for
> my doctor and no one even told me when to get a follow up.
>
> And the lumbar puncture I am scared I am going to go to the hospital see
> the needle and say I am outta here and freak out. My anxiety level is
> so high right now, I am scared plumb to death.
>
> And if neuro is right and I have the cns lupus and I have to be on
> chemo, will I be able to go outside, shopping, will I loose all my hair.
> Will I have to stay in doors all the time so I don't risk catching a
> virus or getting sick? My girls school plays, will I be able to go to
> them? These are some of the questions I have and wanted to ask my
> doctor. My reg doc is really cool, she is not a rhummey or a neuro just
> a reg md but to me she plays all three roles my rhummey does not consult
> with neuro and when he sends reports to my reg doc its a miracle. I
> also have this cognitive thing going on witch neuro suspects is from a
> cns lupus involvement. If anyone can please help or offer support
> please, let me know. Neuro also said I have to have neuro tests
> preformed and I need to see a therapist. Thanks in advance
> (((((((((hugs)))))) Melody
>
| |
| Stephanie Townsend 2004-12-16, 9:24 am |
| Oh Melody!
I haven't posted in awhile, but I was so upset by your post I had to write
to tell you that you are in my prayers. I can only imagine how this is all
very frightening and overwhelming. I have not had experience with anything
you are talking about except that I have had MANY spinal taps due to another
condition I have. I know how terrifying they can be. My first one was pretty
horrendous as well -- an internist was doing it and nicked the nerves and it
was quite painful. However -- to give you some hope -- since then I have had
a number of needles in the back/spinals and NONE were like the first. From
then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an
anesthesiologist as well) to do my spinal taps. They numb with lidocaine,
which feels like a small bee sting in the back (not nice but bearable) and
then the needle going in feels like a dull to moderate ache. That is all you
should feel if a good anesthesiologist is doing it. I know each of us senses
pain differently -- but I swear the lead up is worse than the actual event.
You may want to ask if you can have someone you trust with you to hold your
hand and distract you through the procedure. Many times only a nurse is
allowed to be there -- but I would express your fears to her and ask her to
be the support -- someones hand to squeeze and someone to talk you through
it. And lastly, I have found that deep breathing helps -- I take a deep
breath right before the first needle goes in -- and I breath out hard
through my mouth with pursed lips during the initial sting of pain (kinda
like labor breathing!). Then I do slow controlled breaths (in through nose,
out through pursed lips) during the rest when there is the aching. This
helps relax your muscles and takes down on the pain. And lastly, one time I
had way too many needles stuck in my back and I broke down and cried to my
doc and he ordered Adivan to relax me before the procedure. This may be an
option for you.
I am so sorry that you must endure all of this. Please keep us updated on
how you are doing. Let me know if there is anything else I can tell you
about surviving spinal taps. Let us know when it is scheduled so we can all
be sending prayers your way on that day.
Stephanie
"Lassy Lass" <MelodyMansker@webtv.net> wrote in message
news:23442-41BF5224-15@storefull-3218.bay.webtv.net...
>I had a appointment with another neuro yesterday, via satellite. She
> told me I present symptoms of both ms and cns lupus. She ordered the
> test I had been dreading. She ordered a lumbar puncture.
>
> I had a lumbar puncture done 11 yrs ago due to a headache so bad I was
> incoherent. It was before anyone knew I had lupus, anyways they did not
> numb me or anything and they missed the first time so they had to do it
> again and the second time they did not numb me either. It hurt so bad I
> thought I was going to pass out, I was screaming as loud as I could
> hoping they would pull the needle or what ever it was out of my back,
> and I swore I would never have it done again. It traumatized me that
> much.
>
> I told the neuro of my experience, and she said I have to have it done
> so they can get me the treatment I need.
>
> The neuro is also questioning why my rhummey is not treating my lupus
> more aggressively. I was on that plaquenil but because I suffered
> horrid headaches he took me off it it.
>
> Now my rhummey does not want me on any type of chemo because I have no
> spleen, unless it is life threatening.
>
> The other neuro I was seeing I call him the mean one has had me on 3,000
> mg of keppra a day, and seeing how no one knows why I even take it, this
> neuro wants me off of it. Which is totally fine with me, those pills
> are huge and taking six of em a day is not fun.
>
> My reg doc was in the room with me, so the neuro had my doc do some
> tests, like pretending I am walking on a straight line, she had me stand
> up and hold my arms up, I flunked the memory test. She tested the
> reflexes on my legs and arms and I had no reflexes on my right side at
> all then my doc flashed this light into my eyes I am not sure what test
> she was doing but she told the neuro she would have to dialate my eyes.
>
> Neuro told me that ms and cns lupus are very serious and that I will
> need to get treated right away. That scared me. Sometimes I feel like
> a ticking time bomb. I was so upset when I left I got sick. After the
> neuro was done seeing me she told me to leave the room and that she
> needed to talk with my reg doc in private. The nurse walked me out of
> the room so I asked her do I wait in the lobby or go home or what she
> said she didn't know so I just went home. I had alot of questions for
> my doctor and no one even told me when to get a follow up.
>
> And the lumbar puncture I am scared I am going to go to the hospital see
> the needle and say I am outta here and freak out. My anxiety level is
> so high right now, I am scared plumb to death.
>
> And if neuro is right and I have the cns lupus and I have to be on
> chemo, will I be able to go outside, shopping, will I loose all my hair.
> Will I have to stay in doors all the time so I don't risk catching a
> virus or getting sick? My girls school plays, will I be able to go to
> them? These are some of the questions I have and wanted to ask my
> doctor. My reg doc is really cool, she is not a rhummey or a neuro just
> a reg md but to me she plays all three roles my rhummey does not consult
> with neuro and when he sends reports to my reg doc its a miracle. I
> also have this cognitive thing going on witch neuro suspects is from a
> cns lupus involvement. If anyone can please help or offer support
> please, let me know. Neuro also said I have to have neuro tests
> preformed and I need to see a therapist. Thanks in advance
> (((((((((hugs)))))) Melody
>
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