Look at me all upright and walking around!

[Guest guest]

Hey Guys,   I started talking last week and the fell of the face of the planet.  Wanna know why - those steroids about killed me!  I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days.  No taper just bam bam bam.  Well on the 6th day when I didn't get any dose all hell broke loose in my body.  I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these " attacks " would happen.  So Saturday and Sunday I just laid in bed in and out of consciousness.  I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much.  I will say that I have never been so " relaxed " in that my arms and legs and body just laid there in a heap - so weak.  I am not saying that I couldn't move them just that I was so weak I couldn't.  Going to the bathroom was nearly impossible.  I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed.  I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help.  Since my gen fam dr didn't order this she basically just told me to call up to my neuro.  I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body.  I called my neuro right when I got back.  I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb!  All she kept saying was " so the steroids aren't working "   How the hell would I know when I was so so sick.   Basically, any time I had to do anything my body would just go nutty and I would be dizzy, clammy, shaky, spinny, just whacked.  The cat jumped on the bed and startled me and these attacks would start all over.  It was horrible.  My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong!  When I was " good " I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble.  He suggested that perhaps I take some Xanax.  I am not sure where me not being able to wake up or move suggested to him that I be sedated.  Kinda just taught me that drs are drs and don't really listen to you.  My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly.   My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be xyz.  Basically I think that are all idiots.  Just because it isn't typical doesn't mean that wasn't exactly what was happening to me.  My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible.  Really?  Ok so all of this rambling to ask this question....

Why do I need a spinal tap?  It is my understanding that they can't 100% diagnose me with MS until I am dead really.  So what exactly is a spinal tap going to show or not show them?  It is just to rule out meningitis?  Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out.  I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid?  I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.

Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one " attack " when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life.  lol  Again proving to me this is my adrenal system out of whack.  I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks.   On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment.  One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday.

<---who is happy to be upright and walking around again

[Guest guest]

Oh my that had to be scary. You are in my prayers.

Hugs

nne

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world "

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May the Lord Make his face shine upon you, and give you Peace...Forever "

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> Look at me all upright and walking around!

>

> Hey Guys,

> I started talking last week and the fell of the face of the planet.

> Wanna know why - those steroids about killed me! I mean holy cow bad bad

> bad.

>

> So they gave me 1 gram of solu medrol each day for 5 days. No taper just

> bam bam bam. Well on the 6th day when I didn't get any dose all hell

> broke

> loose in my body. I was dizzy, clammy, disoriented, heart racing, heart

> pounding, nystagmus so bad it made my eyeballs hurt and looking back

> mentally I wasn't there when these " attacks " would happen. So Saturday

> and

> Sunday I just laid in bed in and out of consciousness. I didn't have the

> strength to lift my arms, I couldn't stay awake, I just couldn't do much.

> I

> will say that I have never been so " relaxed " in that my arms and legs and

> body just laid there in a heap - so weak. I am not saying that I

> couldn't

> move them just that I was so weak I couldn't. Going to the bathroom was

> nearly impossible. I would sit on the toilet and be swimming of this

> daze

> of confusion until I could get finished and collapse into bed. I had a

> regular dr appointment (just a yearly checkup) on Monday so I decided

> that I

> would go to that and see if I could get any help. Since my gen fam dr

> didn't order this she basically just told me to call up to my neuro. I

> barely remember any of that appointment but I do crying uncontrollably

> and

> causing a scene before I left and she assured me that I would feel better

> in

> a week or so once the steroids left my body. I called my neuro right

> when I

> got back. I got a call back from her the following evening around 7pm

> and

> she suggested that perhaps I had some sort of infection - dumb! All she

> kept saying was " so the steroids aren't working " How the hell would I

> know

> when I was so so sick. Basically, any time I had to do anything my body

> would just go nutty and I would be dizzy, clammy, shaky, spinny, just

> whacked. The cat jumped on the bed and startled me and these attacks

> would

> start all over. It was horrible. My brother who is an ER dr suggested

> that

> I had steroid psychosis - thanks bro - wrong! When I was " good " I was

> good

> but when any thing that required me body to snap to, it would crap out

> again

> and the world would crumble. He suggested that perhaps I take some

> Xanax.

> I am not sure where me not being able to wake up or move suggested to him

> that I be sedated. Kinda just taught me that drs are drs and don't

> really

> listen to you. My other brother who is a nurse anesthetists said that

> probably my adrenals were sluggish from the streriods and the quick stop

> of

> them and sure enough when I looked that up it matched my symptoms

> exactly.

> My neuro, fam dr and dr brother all said how that was so unusual that it

> can't possibly be that and must be xyz. Basically I think that are all

> idiots. Just because it isn't typical doesn't mean that wasn't exactly

> what

> was happening to me. My nero even at that time said how important it was

> for me to come back and have a repeat MRI and get a spinal tap done as

> quickly as possible. Really? Ok so all of this rambling to ask this

> question....

>

> Why do I need a spinal tap? It is my understanding that they can't 100%

> diagnose me with MS until I am dead really. So what exactly is a spinal

> tap

> going to show or not show them? It is just to rule out meningitis?

> Basically after this brush with medicine I don't really feel like doing

> any

> kind of invasive testing just so they can feel better about whatever it

> they

> want to rule out. I don't mind doing the MRI again even though it is a 3

> hour drive to do it, but why exactly take some of my spinal fluid? I

> know

> what I had a spinal block for my c section I had really intense headaches

> for like 6-8 weeks and I really don't care to go through that unless it

> is

> really that important.

>

> Thankfully, today I was able to work and aside from many moments of a

> buzzy

> head I only have one " attack " when my husband and I was watching CSI and

> an

> scene shocked me with a dead guy coming back to life. lol Again proving

> to

> me this is my adrenal system out of whack. I am still exhausted but

> pushing

> through because I own my own business and hadn't been to work in almost 2

> weeks. On the positive side, when I feel good my arms and hands are

> STRONG, and my vision in crisp and clear and colors are vibrant again, so

> yes there was some benefit but man what a cost at least at this moment.

> One

> more thing - not that I EVEN care about it but I have gained 16 pounds

> since

> Monday.

>

> <---who is happy to be upright and walking around again

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[Guest guest]

Wow, . You sure have been through the wringer! I am SO sorry you had to endure all this. Steroids can really wreak havoc on the body, tapering is essential, and I'm surprised they didn't put you on an oral taper once you finished with the infusions!As far as the spinal tap, I'd be tempted to forego that, as you have had such horrible effects from it in the past, and you surely don't need that now, after all you have just gone through. I know I had the terrible headaches afterwards also, and it lasted for days.Know we are here for you to encourage and support.gentle hugs, KateTo: MSersLife Sent: Thu, January 20, 2011 11:18:35 PMSubject: Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the

bathroom was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go

nutty and I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must

be xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....

Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.

Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday.

<---who is happy to be upright and walking around again

[Guest guest]

I read some of ns and Sharon research and the only time the LP might work is if you were in a major flare - why put yourself through it - especially with a history of bad stuff God, grant me the strength of eagles wings, the faith and courage to fly to new heights, and the wisdom to rely on his spirit to carry me there.

To: MSersLife Sent: Fri, January 21, 2011 9:03:00 AMSubject: Re: Look at me all upright and walking around!

Wow, . You sure have been through the wringer! I am SO sorry you had to endure all this. Steroids can really wreak havoc on the body, tapering is essential, and I'm surprised they didn't put you on an oral taper once you finished with the infusions!As far as the spinal tap, I'd be tempted to forego that, as you have had such horrible effects from it in the past, and you surely don't need that now, after all you have just gone through. I know I had the terrible headaches afterwards also, and it lasted for days.Know we are here for you to encourage and support.gentle hugs, Kate

To: MSersLife Sent: Thu, January 20, 2011 11:18:35 PMSubject: Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the

bathroom was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go

nutty and I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must

be xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c

section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again

[Guest guest]

Well on my last MRI I had a distinct area of swelling on my brainstem thus the recent steroids. Is that major? What Does it actually tell them. Sent from my iPhone

I read some of ns and Sharon research and the only time the LP might work is if you were in a major flare - why put yourself through it - especially with a history of bad stuff God, grant me the strength of eagles wings, the faith and courage to fly to new heights, and the wisdom to rely on his spirit to carry me there.

To: MSersLife Sent: Fri, January 21, 2011 9:03:00 AMSubject: Re: Look at me all upright and walking around!

Wow, . You sure have been through the wringer! I am SO sorry you had to endure all this. Steroids can really wreak havoc on the body, tapering is essential, and I'm surprised they didn't put you on an oral taper once you finished with the infusions!As far as the spinal tap, I'd be tempted to forego that, as you have had such horrible effects from it in the past, and you surely don't need that now, after all you have just gone through. I know I had the terrible headaches afterwards also, and it lasted for days.Know we are here for you to encourage and support.gentle hugs, Kate

To: MSersLife Sent: Thu, January 20, 2011 11:18:35 PMSubject: Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the

bathroom was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go

nutty and I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must

be xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c

section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again

[Guest guest]

Isn't a person on Solumedrol always supposed to have a taper off???? I'm never had solumedrol but have had oral prednisone several times. I have always tapered on prednisone except for the last time. The last time I had a killer headache each of the three days of the med.I understand your reluctance to have the spinal tap. They have already dxed you with MS. So why do they need the spinal tap?? I think I would probably say no. But that's just me. I am a little contrary with my doctors:)hugs SharonThis email is a

natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To:

MSersLife Sent: Thu, January 20, 2011 9:18:35 PMSubject: Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the bathroom

was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go nutty and

I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be

xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....

Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.

Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday.

<---who is happy to be upright and walking around again

[Guest guest]

Wow , you really went through the wringer . I'm glad you could at least sleep through some of it. As for the spinal tap, what exactly are they looking for? If it's just ms, I'd forget it.

When my dr asked if I wanted a LP, I asked "why, aren't you satisfied with your diagnosis of ms?" Him, "yes, but even tho it comes with some discomfort and isn't always accurate, it's part of routine protocol". Needless to say, I didn't have it.

Anyway, glad to have you back with us and hope you continue feeling better ... hugs, Cait

Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the bathroom was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go nutty and I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again

[Guest guest]

Well, everyone that I talk to that is NOT my drs say that you should but all of my drs say you don't have to.  But I am here to say that it is cruel not to.  I mean yes, I lived, but there are times that I felt like I was hovering near death.  And I am not exaggerating.  Even today I am still having issues with feeling a bit buzzy in my head and body randomly.  If I have to take it again I am going to negotiate before I do but there better be some really horrible symptoms I am having before I agree to it again.

Well, I don't know if they have 100% diagnosed me but what she said was " all of your signs and symptoms are classical of MS so we are going to do this spinal tap "   So not really sure why I would need it and what it is going to show.  I mean they have already started treatment with steriods to reduce the swelling on my brainstem so they are already treating it like MS - I am thinking that the spinal is just to rule out something else?  I do know that I was trying to scramble to get it done quickly when I was there and she said there was no need to hurry to get it done.  But now that the solumedrol made me sick she wanted it done asap.

I am really leaning towards not doing it but I guess I should call her and get some more clarification.  My problem is I am just so angry that I was given solumedrol without a taper and got sizk I have a hard time being nice. 

 

Isn't a person on Solumedrol always supposed to have a taper off????  I'm never had solumedrol but have had oral prednisone several times.  I have always tapered on prednisone except for the last time.  The last time I had a killer headache each of the three days of the med.

I understand your reluctance to have the spinal tap.  They have already dxed you with MS.  So why do they need the spinal tap??  I think I would probably say no.  But that's just me.  I am a little contrary with my doctors:)

hugs SharonThis email is a

natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

 

 

To:

MSersLife Sent: Thu, January 20, 2011 9:18:35 PMSubject: Look at me all upright and walking around!

Hey Guys,   I started talking last week and the fell of the face of the planet.  Wanna know why - those steroids about killed me!  I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days.  No taper just bam bam bam.  Well on the 6th day when I didn't get any dose all hell broke loose in my body.  I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these " attacks " would happen.  So Saturday and Sunday I just laid in bed in and out of consciousness.  I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much.  I will say that I have never been so " relaxed " in that my arms and legs and body just laid there in a heap - so weak.  I am not saying that I couldn't move them just that I was so weak I couldn't.  Going to the bathroom

was nearly impossible.  I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed.  I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help.  Since my gen fam dr didn't order this she basically just told me to call up to my neuro.  I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body.  I called my neuro right when I got back.  I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb!  All she kept saying was " so the steroids aren't working "   How the hell would I know when I was so so sick.   Basically, any time I had to do anything my body would just go nutty and

I would be dizzy, clammy, shaky, spinny, just whacked.  The cat jumped on the bed and startled me and these attacks would start all over.  It was horrible.  My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong!  When I was " good " I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble.  He suggested that perhaps I take some Xanax.  I am not sure where me not being able to wake up or move suggested to him that I be sedated.  Kinda just taught me that drs are drs and don't really listen to you.  My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly.   My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be

xyz.  Basically I think that are all idiots.  Just because it isn't typical doesn't mean that wasn't exactly what was happening to me.  My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible.  Really?  Ok so all of this rambling to ask this question....

Why do I need a spinal tap?  It is my understanding that they can't 100% diagnose me with MS until I am dead really.  So what exactly is a spinal tap going to show or not show them?  It is just to rule out meningitis?  Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out.  I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid?  I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.

Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one " attack " when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life.  lol  Again proving to me this is my adrenal system out of whack.  I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks.   On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment.  One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday.

<---who is happy to be upright and walking around again

[Guest guest]

Yes, thankfully I was sleeping through a lot of it.  I am still sleeping alot.  The more I sleep the better I feel.Wow, what your dr said sounded more like " well you see we just like to cover our asses and bill some insurance "

So, isn't always accurate?  What exactly is it showing?

 

Wow , you really went through the wringer .  I'm glad you could at least sleep through some of it.  As for the spinal tap, what exactly are they looking for?  If it's just ms, I'd forget it. 

 

When my dr asked if I wanted a LP, I asked " why, aren't you satisfied with your diagnosis of ms? "   Him, " yes, but even tho it comes with some discomfort and isn't  always accurate, it's part of routine protocol " .  Needless to say, I didn't have it. 

 Anyway, glad to have you back with us and hope you continue feeling better ... hugs, Cait

Look at me all upright and walking around!

 

Hey Guys,   I started talking last week and the fell of the face of the planet.  Wanna know why - those steroids about killed me!  I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days.  No taper just bam bam bam.  Well on the 6th day when I didn't get any dose all hell broke loose in my body.  I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these " attacks " would happen.  So Saturday and Sunday I just laid in bed in and out of consciousness.  I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much.  I will say that I have never been so " relaxed " in that my arms and legs and body just laid there in a heap - so weak.  I am not saying that I couldn't move them just that I was so weak I couldn't.  Going to the bathroom was nearly impossible.  I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed.  I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help.  Since my gen fam dr didn't order this she basically just told me to call up to my neuro.  I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body.  I called my neuro right when I got back.  I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb!  All she kept saying was " so the steroids aren't working "   How the hell would I know when I was so so sick.   Basically, any time I had to do anything my body would just go nutty and I would be dizzy, clammy, shaky, spinny, just whacked.  The cat jumped on the bed and startled me and these attacks would start all over.  It was horrible.  My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong!  When I was " good " I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble.  He suggested that perhaps I take some Xanax.  I am not sure where me not being able to wake up or move suggested to him that I be sedated.  Kinda just taught me that drs are drs and don't really listen to you.  My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly.   My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be xyz.  Basically I think that are all idiots.  Just because it isn't typical doesn't mean that wasn't exactly what was happening to me.  My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible.  Really?  Ok so all of this rambling to ask this question....Why do I need a spinal tap?  It is my understanding that they can't 100% diagnose me with MS until I am dead really.  So what exactly is a spinal tap going to show or not show them?  It is just to rule out meningitis?  Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out.  I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid?  I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one " attack " when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life.  lol  Again proving to me this is my adrenal system out of whack.  I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks.   On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment.  One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again

[Guest guest]

,In this case, it seems that the reason they want you in for a spinal tap is to see if there isn't some infection in your spinal fluid, since these symptoms are strange. I'm a quad because of all this and because these attacks came on so fast, my neuro wanted an LP because it could have easily been caused by something other than MS...I don't think your doctor's intention is to use it to diagnose MS.

As for the MRI...if they are still trying to diagnose MS for you, they might want to try to catch the lesions as being active.Steroid tapers are not necessary, contrary to popular belief. Studies have shown that there is no evidence of benefit. I've never had a taper because I'm diabetic and never suffered because of it. There is obviously something going on with you; might be time to explore further with your neuro?

Lifeportunities: transform your home-based life into freedom.Visit the Practical Homeschooling blog!

 

Yes, thankfully I was sleeping through a lot of it.  I am still sleeping alot.  The more I sleep the better I feel.Wow, what your dr said sounded more like " well you see we just like to cover our asses and bill some insurance "

So, isn't always accurate?  What exactly is it showing?

 

Wow , you really went through the wringer .  I'm glad you could at least sleep through some of it.  As for the spinal tap, what exactly are they looking for?  If it's just ms, I'd forget it. 

 

When my dr asked if I wanted a LP, I asked " why, aren't you satisfied with your diagnosis of ms? "   Him, " yes, but even tho it comes with some discomfort and isn't  always accurate, it's part of routine protocol " .  Needless to say, I didn't have it. 

 Anyway, glad to have you back with us and hope you continue feeling better ... hugs, Cait

Look at me all upright and walking around!

 

Hey Guys,   I started talking last week and the fell of the face of the planet.  Wanna know why - those steroids about killed me!  I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days.  No taper just bam bam bam.  Well on the 6th day when I didn't get any dose all hell broke loose in my body.  I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these " attacks " would happen.  So Saturday and Sunday I just laid in bed in and out of consciousness.  I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much.  I will say that I have never been so " relaxed " in that my arms and legs and body just laid there in a heap - so weak.  I am not saying that I couldn't move them just that I was so weak I couldn't.  Going to the bathroom was nearly impossible.  I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed.  I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help.  Since my gen fam dr didn't order this she basically just told me to call up to my neuro.  I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body.  I called my neuro right when I got back.  I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb!  All she kept saying was " so the steroids aren't working "   How the hell would I know when I was so so sick.   Basically, any time I had to do anything my body would just go nutty and I would be dizzy, clammy, shaky, spinny, just whacked.  The cat jumped on the bed and startled me and these attacks would start all over.  It was horrible.  My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong!  When I was " good " I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble.  He suggested that perhaps I take some Xanax.  I am not sure where me not being able to wake up or move suggested to him that I be sedated.  Kinda just taught me that drs are drs and don't really listen to you.  My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly.   My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be xyz.  Basically I think that are all idiots.  Just because it isn't typical doesn't mean that wasn't exactly what was happening to me.  My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible.  Really?  Ok so all of this rambling to ask this question....Why do I need a spinal tap?  It is my understanding that they can't 100% diagnose me with MS until I am dead really.  So what exactly is a spinal tap going to show or not show them?  It is just to rule out meningitis?  Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out.  I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid?  I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one " attack " when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life.  lol  Again proving to me this is my adrenal system out of whack.  I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks.   On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment.  One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again

[Guest guest]

Thank you for chiming in here. You brought up some interesting points for sure! SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sat, January 22, 2011 9:14:59 AMSubject: Re: Look at me all upright and walking around!

,In this case, it seems that the reason they want you in for a spinal tap is to see if there isn't some infection in your spinal fluid, since these symptoms are strange. I'm a quad because of all this and because these attacks came on so fast, my neuro wanted an LP because it could have easily been caused by something other than MS...I don't think your doctor's intention is to use it to diagnose MS.

As for the MRI...if they are still trying to diagnose MS for you, they might want to try to catch the lesions as being active.Steroid tapers are not necessary, contrary to popular belief. Studies have shown that there is no evidence of benefit. I've never had a taper because I'm diabetic and never suffered because of it. There is obviously something going on with you; might be time to explore further with your neuro?

Lifeportunities: transform your home-based life into freedom.Visit the Practical Homeschooling blog!

Yes, thankfully I was sleeping through a lot of it. I am still sleeping alot. The more I sleep the better I feel.Wow, what your dr said sounded more like "well you see we just like to cover our asses and bill some insurance"

So, isn't always accurate? What exactly is it showing?

Wow , you really went through the wringer . I'm glad you could at least sleep through some of it. As for the spinal tap, what exactly are they looking for? If it's just ms, I'd forget it.

When my dr asked if I wanted a LP, I asked "why, aren't you satisfied with your diagnosis of ms?" Him, "yes, but even tho it comes with some discomfort and isn't always accurate, it's part of routine protocol". Needless to say, I didn't have it.

Anyway, glad to have you back with us and hope you continue feeling better ... hugs, Cait

Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the bathroom was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go nutty and I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again

[Guest guest]

Best to get some clarification from your dr as to what they are looking for . If it's meningitis or encephalitis, it might be worth it. Altho one of the things I was told when I finally got to the dr in 1979 was that if it were viral, it would be too late to find out what virus by an LP. Remember that was 30 yrs ago, no neuro, and could have been bullcrap ... hugs, Cait

Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the bathroom was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go nutty and I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday. <---who is happy to be upright and walking around again