Re: MRI'S - Joan

[Guest guest]

Hi Joan,

How are you feeling? Been wondering how your Mri's went. I hate them. They

make me so claustrophobic. Did you get through the whole thing? Any results

yet ? I hope it went well.

Keep in touch okay . When you feel up to it.

Hugs,

[Guest guest]

To (glad to see you're back!) & All,

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: BearyPrety@...

Hi Joan,

How are you feeling? Been wondering how your Mri's went. I hate them. They

make me so claustrophobic. Did you get through the whole thing? Any results

yet ? I hope it went well.

Keep in touch okay . When you feel up to it.

Hugs,

Send to -Offtopiconelist messages unrelated to lyme, please.

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To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

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[Guest guest]

Joan,

I'm so sorry to hear your news. I think I qualify as housebound, but its

probably self imposed. I'm still a little paranoid to do outside activities

and just never feel energetic enough to do anything. I'm really get bummed

about that and keep telling myself its mind over matter. But I don't have

disc problems like you. Good luck with getting the massages, and who knows

maybe something will help you one day so you don't have to give up what you

love. I'll be praying for you and hoping.

Good luck

Vicki

Re: [Lyme-aid] MRI'S - Joan

To (glad to see you're back!) & All,

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

Hi Joan,

I am currently waiting for approvals and referrals to have my cervical

discs MRI'd again. I know that this disease is creating havoc on my spinal

cord and central nervous system. In 1997, I had herniation at C-5 & C-6, in

1998 C-7 too. I can hardly wait (sarcasm) to see what 1999 brings! The

strange part about this is these herniations rarely cause me pain, (unless I

overdo). The major symptom is totally numb hands and arms, constantly. In

1997, I tried PT, it was a nightmare, much more pain than I experienced

before I went there, so I stopped that. I so sympathize with the heartache

you are going through with the results of your latest MRI. Curious, before

you got this damned disease, did you have any back/neck problems to speak

of? I didn't I swear the damn spirochetes are feeding on my spine.

I have no interest in riding a horse, but I feel your pain in losing this

ability. Let me know how you make out with the PT, and above all tell them

to take it slow!

Hugs,

Marta NJ

To (glad to see you're back!) & All,

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

Joan, I keep trying to remember and this just came to me. If you

strengthen the muscles in those areas around the herniation you can

actually keep the substance in place within you disc. So neck exercises

would be a good thing to try to do. Try to not wear a cervical collar

because it weakens the muscles. If the herniations are minor, massage

Could help you strengthen those hurting muscles and it would also help

rid that area of Ischemia (toxins) which cause inflamation and pain.

Always drink plenty of water after each massage. I would suggest

neuro-muscular massage therapist (NMMT) They dont like to be called

massage therapist. Going to bed now. Lovey

On Wed, 27 Oct 1999 05:20:10 -0400 " J & M McCoy " <mlmccoy@...>

writes:

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi Joan,

> I am currently waiting for approvals and referrals to have my

> cervical

> discs MRI'd again. I know that this disease is creating havoc on my

> spinal

> cord and central nervous system. In 1997, I had herniation at C-5 &

> C-6, in

> 1998 C-7 too. I can hardly wait (sarcasm) to see what 1999 brings!

> The

> strange part about this is these herniations rarely cause me pain,

> (unless I

> overdo). The major symptom is totally numb hands and arms,

> constantly. In

> 1997, I tried PT, it was a nightmare, much more pain than I

> experienced

> before I went there, so I stopped that. I so sympathize with the

> heartache

> you are going through with the results of your latest MRI. Curious,

> before

> you got this damned disease, did you have any back/neck problems to

> speak

> of? I didn't I swear the damn spirochetes are feeding on my spine.

> I have no interest in riding a horse, but I feel your pain in

> losing this

> ability. Let me know how you make out with the PT, and above all

> tell them

> to take it slow!

> Hugs,

> Marta NJ

>

>

> To (glad to see you're back!) & All,

>

> I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

> I'd had before, so they weren't bad...although I did keep my eyes

> closed

> during the cervical one. What was painful, though, was lying still

> for

> so long. The lumbar was 45 mins. and the cervical was 30 mins.

>

> Anyway, the news wasn't good...I have arthritis in my neck, and

> discs C4

> and C5 are herniated. I also have arthritis in my back, and another

> herniated disc! There goes my hope of ever horseback riding again.

> :-(

>

> My LLMD increased the Plaquenil to help with the inflammation, as I

> am

> maxed out on the Celebrex..., I remember you saying that your

> relief

> from the Celebrex wore off. :-(( He referred me to a PT, but I am

> going to see if I am covered for massage...that's all I can deal with

> now.

>

> It's depressing because now I know that it's not going away...that

> it's

> worse than I thought. I had hoped that I'd be able to ride again, and

> have some social interaction again. (All of my other neighbors work

> and

> have families to tend to). But I guess that it was unrealistic to

> think

> I'd be able to ride again...I can't even drive because of vertigo and

> weakness. I guess I'll have to get used to being housebound. Anybody

> else housebound? Sorry for the downer...Joan LI NY

>

> 1st Known Deer Tick Bites & Sx: '85

> 1st (Neg): '89

> Continued Sx & Neg. s: '90-'99

> 1st WB: 4+ Specific Bands: 4/99

> Late Neuro-LD Dx: 6/99

>

> ---------------------------

[Guest guest]

Joan, what a dream! How lovely to look out on an open pasture and see horses

grazing! No surprise to me that so many of us with these symptoms are animal

lovers and lovers of the great outdoors. Always a tradeoff, isn't there?

(Michigan)

[Guest guest]

In a message dated 10/27/99 5:19:55 AM Eastern Daylight Time,

mlmccoy@... writes:

<<

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

>>

Hi Joan

Sorry to hear about your diagnosis. I qualify for being housebound and have

been so for many years.

hugs,

lea

[Guest guest]

Hi Vicki,

It's messages like yours that make me realize that I am not missing as

much in the " outside world " . The people on this list provide me with

support, encouragement, understanding and friendship. For all of that, I

am very grateful.

Horses were always very important to my my husband and me. We met at the

stable where I boarded my horse when we were in our teens. We'd kept

horses at our house until the last one passed, and I was too sick to

care for any more. Since we both can't ride anymore, he said that when

we retire, we can buy a number of acres. We can then rescue some horses

from the slaughterhouse, turn them loose, and watch them graze...I can't

wait... Thanks, Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: " Vicki & Ferraro (home) " <ferraroa@...>

Joan,

I'm so sorry to hear your news. I think I qualify as housebound, but its

probably self imposed. I'm still a little paranoid to do outside activities

and just never feel energetic enough to do anything. I'm really get bummed

about that and keep telling myself its mind over matter. But I don't have

disc problems like you. Good luck with getting the massages, and who knows

maybe something will help you one day so you don't have to give up what you

love. I'll be praying for you and hoping.

Good luck

Vicki

Re: [ ] MRI'S - Joan

To (glad to see you're back!) & All,

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Hi Marta,

Glad to see you posting today.

I'm glad that your herniations rarely cause you pain, but the numbness

must be frustrating. Is there anything short of surgery that they can do

to hep the numbness?

My pain has been terrible. The Celebrex worked wonders for the first two

weeks or so. Since then, the pain has increased again. I was expecting

that they'd find arthritis, but not herniations! It seems that from what

the report says, the herniations are pressing on the spinal cord, and

flattening it in one area. Also, there's a tear at the L5-S1 level on

the lumbar MRI. Does anybody know how low in the spine that is?

It is hard to say if I had any neck or back problems before Lyme

disease, because it was only recently dx'd, but I'm sure I've had LD for

at least 10 yrs. I believe that I had a neck xray done prior to that,

and it was normal.

I'm not convinced that PT is the answer, so I'm in no hurry to try it.

Take care of yourself! Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: " J & M McCoy " <mlmccoy@...>

Hi Joan,

I am currently waiting for approvals and referrals to have my cervical

discs MRI'd again. I know that this disease is creating havoc on my spinal

cord and central nervous system. In 1997, I had herniation at C-5 & C-6, in

1998 C-7 too. I can hardly wait (sarcasm) to see what 1999 brings! The

strange part about this is these herniations rarely cause me pain, (unless I

overdo). The major symptom is totally numb hands and arms, constantly. In

1997, I tried PT, it was a nightmare, much more pain than I experienced

before I went there, so I stopped that. I so sympathize with the heartache

you are going through with the results of your latest MRI. Curious, before

you got this damned disease, did you have any back/neck problems to speak

of? I didn't I swear the damn spirochetes are feeding on my spine.

I have no interest in riding a horse, but I feel your pain in losing this

ability. Let me know how you make out with the PT, and above all tell them

to take it slow!

Hugs,

Marta NJ

To (glad to see you're back!) & All,

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Hi Lovey,

I just received my MRI reports, and they say that the herniations press

on the spinal cord, but the spinal signals are normal. Can I still go

for the massage? I'm afraid of doing neck exercises at this point

because my neck cracks and hurts when I turn my head...

I'll stay away from the nerve blocks for now, as I had a horrendous

experience with my Lumbar Puncture.

Thanks for all your help! Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: lovey38@...

Joan, I keep trying to remember and this just came to me. If you

strengthen the muscles in those areas around the herniation you can

actually keep the substance in place within you disc. So neck exercises

would be a good thing to try to do. Try to not wear a cervical collar

because it weakens the muscles. If the herniations are minor, massage

Could help you strengthen those hurting muscles and it would also help

rid that area of Ischemia (toxins) which cause inflamation and pain.

Always drink plenty of water after each massage. I would suggest

neuro-muscular massage therapist (NMMT) They dont like to be called

massage therapist. Going to bed now. Lovey

On Wed, 27 Oct 1999 05:20:10 -0400 " J & M McCoy " <mlmccoy@...>

writes:

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi Joan,

> I am currently waiting for approvals and referrals to have my

> cervical

> discs MRI'd again. I know that this disease is creating havoc on my

> spinal

> cord and central nervous system. In 1997, I had herniation at C-5 &

> C-6, in

> 1998 C-7 too. I can hardly wait (sarcasm) to see what 1999 brings!

> The

> strange part about this is these herniations rarely cause me pain,

> (unless I

> overdo). The major symptom is totally numb hands and arms,

> constantly. In

> 1997, I tried PT, it was a nightmare, much more pain than I

> experienced

> before I went there, so I stopped that. I so sympathize with the

> heartache

> you are going through with the results of your latest MRI. Curious,

> before

> you got this damned disease, did you have any back/neck problems to

> speak

> of? I didn't I swear the damn spirochetes are feeding on my spine.

> I have no interest in riding a horse, but I feel your pain in

> losing this

> ability. Let me know how you make out with the PT, and above all

> tell them

> to take it slow!

> Hugs,

> Marta NJ

>

>

> To (glad to see you're back!) & All,

>

> I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

> I'd had before, so they weren't bad...although I did keep my eyes

> closed

> during the cervical one. What was painful, though, was lying still

> for

> so long. The lumbar was 45 mins. and the cervical was 30 mins.

>

> Anyway, the news wasn't good...I have arthritis in my neck, and

> discs C4

> and C5 are herniated. I also have arthritis in my back, and another

> herniated disc! There goes my hope of ever horseback riding again.

> :-(

>

> My LLMD increased the Plaquenil to help with the inflammation, as I

> am

> maxed out on the Celebrex..., I remember you saying that your

> relief

> from the Celebrex wore off. :-(( He referred me to a PT, but I am

> going to see if I am covered for massage...that's all I can deal with

> now.

>

> It's depressing because now I know that it's not going away...that

> it's

> worse than I thought. I had hoped that I'd be able to ride again, and

> have some social interaction again. (All of my other neighbors work

> and

> have families to tend to). But I guess that it was unrealistic to

> think

> I'd be able to ride again...I can't even drive because of vertigo and

> weakness. I guess I'll have to get used to being housebound. Anybody

> else housebound? Sorry for the downer...Joan LI NY

>

> 1st Known Deer Tick Bites & Sx: '85

> 1st (Neg): '89

> Continued Sx & Neg. s: '90-'99

> 1st WB: 4+ Specific Bands: 4/99

> Late Neuro-LD Dx: 6/99

>

> ---------------------------

[Guest guest]

Joan

I love the idea of saving horses at the same time you get to enjoy watching

them graze. But I have a better dream, that you'll not only do that one day,

but you'll also be able to ride. One thing about our inadequate medical

system, they are making great strides on spinal and disc injuries. We have

Reeves (partly) to thank for that. I say that with a little

sarcasm because it makes me mad that we need a Celebrity to get anything

done. When did this happen, when Reagan became president, or am I

just becoming aware of all these problems, and its always been this way. I

can't believe American's can be so shallow, even before I was sick, I tried

to contribute to good causes. This year as I was home on disability, I

answered every phone call and door to fund raisers, and couldn't say no to

one single Medical cause. Even though I can barely afford my own health

expenses. In the past I always donated when I could, but this year really

got me.

Joan, what you said about this list, is so true. I'm so glad I found it. My

first few months on disability I was extremely depressed and didn't even

think about support groups. Thought I could do this all on my own. I'm so

glad my doctor told me to look into it. Thank you all, you are my friends,

my family, my saviors!

One last note, the other night my husband asked if I gave out personal

information, and my name, etc. He was annoyed at me for doing so, I simply

replied - they are my family! He didn't say another word. Thanks again -

everyone.

Be well,

Vicki

Re: [Lyme-aid] MRI'S - Joan

Hi Vicki,

It's messages like yours that make me realize that I am not missing as

much in the " outside world " . The people on this list provide me with

support, encouragement, understanding and friendship. For all of that, I

am very grateful.

Horses were always very important to my my husband and me. We met at the

stable where I boarded my horse when we were in our teens. We'd kept

horses at our house until the last one passed, and I was too sick to

care for any more. Since we both can't ride anymore, he said that when

we retire, we can buy a number of acres. We can then rescue some horses

from the slaughterhouse, turn them loose, and watch them graze...I can't

wait... Thanks, Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

In a message dated 10/28/99 5:56:21 AM Eastern Daylight Time,

mlmccoy@... writes:

<< low back pain especially when walking and standing, a trip to the store is

a

nightmare, and I must sit down to relieve it or lay down if home >>

This is one of my most dreaded symptoms. My doctor is trying to explain this

away as a panic attack, but I'm positive it's Lyme. Those store trips also

trigger bad intestinal problems that require a trip to the store bathroom in

a big hurry many times.

-----------

<<holding a book is hard, surprisingly typing is not too bad, yet holding a

pen to write a check, or trying to fill my pill container>>

I like to read in bed at night, but it is increasingly difficult to hold the

book up where I can read it. I've had carpal tunnel surgery on both wrists

and still have troubles like holding a pen, trying to knit ... I had not

thought of this as a symptom of Lyme until now -- only feared that I'd need

the surgery again.

-------

<>

I was seeing a chiropractor earlier this year (which didn't help a whole

lot). I told him I thought it was sciataca (L-4), but after x-rays, he said

it was L-5, which is just below the sciataca.

---------

I had some physical therapy a month ago (6 sessions), and they seemed to help

in a small way. But if that's what they call managing pain, they need new

management!!!

(MI)

[Guest guest]

Hi Joan,

Sometimes my herniations cause pain, but it is getting more rare. I do

recall when it first began, it started with shoulder pain, than moved to my

neck and upper back. I do take vicoprofen four times daily, maybe that

helps. If I overdo it can be painful. Last two months or so I have low

back pain especially when walking and standing, a trip to the store is a

nightmare, and I must sit down to relieve it or lay down if home. This is a

new one, I mentioned to my doc, but he did not order an MRI, maybe next

month, as I am already getting two this month, brain and cervical.

The constantly numb and tingling hands is a MAJOR PAIN! I drop

everything, my husband used to get angry, but now he realizes I can't help

it, and just shakes his head, and hollers why don't I ask him to get

something, and holding a book is hard, surprisingly typing is not too bad,

yet holding a pen to write a check, or trying to fill my pill container, or

worse yet, pick out the ones I need is hard. The neurologist who did my EMG

a few weeks ago said it was carpal tunnel in both hands, but I disagree, I

feel it is coming from my herniation. When I worked I had carpal tunnel,

and recall it woke me at night, and was painful. This is just tingling. I

am hoping if I ever get on IV that this will disappear, I know it is

farfetched, but I sure want to try that before major surgery.

I tried to find a site that showed a picture of the spine so I could

answer your question about the L-5 herniation and whereabouts it would be,

but after 15 minutes of getting nowhere quit. I hope someone else can help.

Don't give up too readily on the PT, I had a lousy provider, as I have

Aetna US Healthcare, and they sent me to Novacare, which is more like a

gym....one therapist for 4 or 5 patients, I may have been doing the

exercises wrong. I hope you find some pain relief real soon.

Hugs,

Marta NJ

From: Joan <Namkrats3@...>

Subject: Re: [ ] MRI'S - Joan

Hi Marta,

Glad to see you posting today.

I'm glad that your herniations rarely cause you pain, but the numbness

must be frustrating. Is there anything short of surgery that they can do

to hep the numbness?

My pain has been terrible. The Celebrex worked wonders for the first two

weeks or so. Since then, the pain has increased again. I was expecting

that they'd find arthritis, but not herniations! It seems that from what

the report says, the herniations are pressing on the spinal cord, and

flattening it in one area. Also, there's a tear at the L5-S1 level on

the lumbar MRI. Does anybody know how low in the spine that is?

It is hard to say if I had any neck or back problems before Lyme

disease, because it was only recently dx'd, but I'm sure I've had LD for

at least 10 yrs. I believe that I had a neck xray done prior to that,

and it was normal.

I'm not convinced that PT is the answer, so I'm in no hurry to try it.

Take care of yourself! Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

In a message dated 10/28/99 1:13:48 PM Eastern Daylight Time,

ferraroa@... writes:

<< SO when my doctor dx'd carpal tunnel and gave me a brace, I was

relieved. If I wear it every night it helps, but not with the nerve

quivering in my thumb. >>

Vicki...I forget who has what associated disorder..Are you on Synthroid?....I

had a severe problem with CTS and needed a brace for a few weeks...but after

Synthroid was started....it improved 90%, and I haven't needed tthe brace so

I could sleep since last January....(needed it in Nov, and Dec) CTS is

often a symptom of hypothyroid...<just a thought> B

[Guest guest]

Marta,

I have the same problem dropping things all the time, and difficulty

writing. SO when my doctor dx'd carpal tunnel and gave me a brace, I was

relieved. If I wear it every night it helps, but not with the nerve

quivering in my thumb. Do you experience this, you think you have a grip on

something, but still drop it? That is why I don't ask for help, I don't feel

like I need it. I've broken so many dishes and glasses lately. I'm also like

you, where it doesn't bother me when typing. Only trying to figure out what

words and how to spell them. I feel like I'm regressing back to first grade

sometimes.

Vicki

Re: [Lyme-aid] MRI'S - Joan

>

>

>Hi Marta,

>Glad to see you posting today.

>I'm glad that your herniations rarely cause you pain, but the numbness

>must be frustrating. Is there anything short of surgery that they can do

>to hep the numbness?

>

>My pain has been terrible. The Celebrex worked wonders for the first two

>weeks or so. Since then, the pain has increased again. I was expecting

>that they'd find arthritis, but not herniations! It seems that from what

>the report says, the herniations are pressing on the spinal cord, and

>flattening it in one area. Also, there's a tear at the L5-S1 level on

>the lumbar MRI. Does anybody know how low in the spine that is?

>

>It is hard to say if I had any neck or back problems before Lyme

>disease, because it was only recently dx'd, but I'm sure I've had LD for

>at least 10 yrs. I believe that I had a neck xray done prior to that,

>and it was normal.

>

>I'm not convinced that PT is the answer, so I'm in no hurry to try it.

> Take care of yourself! Joan LI NY

>

>1st Known Deer Tick Bites & Sx: '85

>1st (Neg): '89

>Continued Sx & Neg. s: '90-'99

>1st WB: 4+ Specific Bands: 4/99

>Late Neuro-LD Dx: 6/99

>

[Guest guest]

To Marta, Joan, et al from Lovey

The numbness/tingling pain in the hands is a symptom of neurological

lyme. I am on one 300mg capsule of Neurontin. It has helped a little,

but I feel I need the dosage increased. I have had lyme (Bb) for

probably 50 years - long before Steere & Burdorf identified it. It has

gone in/out of remission numerous times. I had to have L-5 disc removed

in 1970. Have never regretted having it done. L-5 is the lowest disc on

the spine just above S-1. L = lumbar; S = sacral. FYI I quote, " The

spine consists of a series of vertebrae extending from the skull down to

a terminal portion represented by the tail-bone (coccyx). The individual

vertebrae vary somewhat in size and appearance, depending upon their

location. Those in the neck are referred to as the cervical vertebrae,

those of the back as the thoracic or dorsal vertebrae, and those in the

small of the back as the lumbar vertebrae. A group of fused vertebrae

extending below the lumbar vertebrae composes the sacrum.............

Between the vertebrae are fibrous disks with a central, more gelatinous

portion called the nucleus pulposus. Occasionally the nucleus pulposus

can work its way out of its location and impinge on one of the spinal

nerves. This produces a radiating type of pain which may be quite

severe...........The chief dangers of fractures of the spine are the

possibility of compression of the spinal cord beneath. Such compression

leads to a variety of neurological symptoms which may progress from

weakness and pain to full paralysis. "

Hope this helps but doesnt scare you. Dealing with a spinal CORD

involvement may warrant having the surgery. Hoping to see all of you at

NIH next week. Lovey

On Thu, 28 Oct 1999 07:42:14 EDT lisa86@... writes:

> From: lisa86@...

>

> In a message dated 10/28/99 5:56:21 AM Eastern Daylight Time,

> mlmccoy@... writes:

>

> << low back pain especially when walking and standing, a trip to the

> store is

> a

> nightmare, and I must sit down to relieve it or lay down if home >>

>

> This is one of my most dreaded symptoms. My doctor is trying to

> explain this

> away as a panic attack, but I'm positive it's Lyme. Those store

> trips also

> trigger bad intestinal problems that require a trip to the store

> bathroom in

> a big hurry many times.

> -----------

> <<holding a book is hard, surprisingly typing is not too bad, yet

> holding a

> pen to write a check, or trying to fill my pill container>>

>

> I like to read in bed at night, but it is increasingly difficult to

> hold the

> book up where I can read it. I've had carpal tunnel surgery on both

> wrists

> and still have troubles like holding a pen, trying to knit ... I had

> not

> thought of this as a symptom of Lyme until now -- only feared that

> I'd need

> the surgery again.

> -------

> <>

>

> I was seeing a chiropractor earlier this year (which didn't help a

> whole

> lot). I told him I thought it was sciataca (L-4), but after x-rays,

> he said

> it was L-5, which is just below the sciataca.

> ---------

> I had some physical therapy a month ago (6 sessions), and they

> seemed to help

> in a small way. But if that's what they call managing pain, they

> need new

> management!!!

>

> (MI)

>

> ---------------------------

[Guest guest]

Hi Lovey,

I am on 1200mg of Neurontin, it helps with shooting electrical pain, but

never has touched the numbness.

Hugs,

Marta NJ

-

>From: lovey38@...

>

>To Marta, Joan, et al from Lovey

>The numbness/tingling pain in the hands is a symptom of neurological

>lyme. I am on one 300mg capsule of Neurontin. It has helped a little,

>but I feel I need the dosage increased. I have had lyme (Bb) for

>probably 50 years - long before Steere & Burdorf identified it.

[Guest guest]

In a message dated 10/27/99 3:11:07 PM EDT, Namkrats3@... writes:

<< Since we both can't ride anymore, he said that when

we retire, we can buy a number of acres. We can then rescue some horses

from the slaughterhouse, turn them loose, and watch them graze...I can't

wait... Thanks, Joan LI NY >>

That sounds so nice Joan. : )

[Guest guest]

Hi Marta,

The Vicoprofen is probably keeping your neck from being too painful...

My husband takes it for back pain.

I also have the lower back pain. I know what you mean by having to lie

down to relieve it. I get it while sitting, which makes my office work

difficult. Standing up or lying down helps some. But, mine didn't start

hurting until I had that damned spinal tap....

As far as your numbness and tingling goes, I think it's hard to say if

it's from the disc problem, or Lyme neuropathy. I have numbness in my

arms and hands (totally dead) when I sleep in certain positions. I don't

think it's a circulation problem, rather a disc problem, because the

feeling takes too long to return even with vigorous shaking. The thing

that makes it hard for me to hold a pen and write is the muscle

cramping...I'll have to remember to take my Magnesium more often!

Thanks for trying to find the spine info for me. You're a pal!

Feel Better, Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: " J & M McCoy " <mlmccoy@...>

Hi Joan,

Sometimes my herniations cause pain, but it is getting more rare. I do

recall when it first began, it started with shoulder pain, than moved to my

neck and upper back. I do take vicoprofen four times daily, maybe that

helps. If I overdo it can be painful. Last two months or so I have low

back pain especially when walking and standing, a trip to the store is a

nightmare, and I must sit down to relieve it or lay down if home. This is a

new one, I mentioned to my doc, but he did not order an MRI, maybe next

month, as I am already getting two this month, brain and cervical.

The constantly numb and tingling hands is a MAJOR PAIN! I drop

everything, my husband used to get angry, but now he realizes I can't help

it, and just shakes his head, and hollers why don't I ask him to get

something, and holding a book is hard, surprisingly typing is not too bad,

yet holding a pen to write a check, or trying to fill my pill container, or

worse yet, pick out the ones I need is hard. The neurologist who did my EMG

a few weeks ago said it was carpal tunnel in both hands, but I disagree, I

feel it is coming from my herniation. When I worked I had carpal tunnel,

and recall it woke me at night, and was painful. This is just tingling. I

am hoping if I ever get on IV that this will disappear, I know it is

farfetched, but I sure want to try that before major surgery.

I tried to find a site that showed a picture of the spine so I could

answer your question about the L-5 herniation and whereabouts it would be,

but after 15 minutes of getting nowhere quit. I hope someone else can help.

Don't give up too readily on the PT, I had a lousy provider, as I have

Aetna US Healthcare, and they sent me to Novacare, which is more like a

gym....one therapist for 4 or 5 patients, I may have been doing the

exercises wrong. I hope you find some pain relief real soon.

Hugs,

Marta NJ

From: Joan <Namkrats3@...>

Subject: Re: [Lyme-aid] MRI'S - Joan

Hi Marta,

Glad to see you posting today.

I'm glad that your herniations rarely cause you pain, but the numbness

must be frustrating. Is there anything short of surgery that they can do

to hep the numbness?

My pain has been terrible. The Celebrex worked wonders for the first two

weeks or so. Since then, the pain has increased again. I was expecting

that they'd find arthritis, but not herniations! It seems that from what

the report says, the herniations are pressing on the spinal cord, and

flattening it in one area. Also, there's a tear at the L5-S1 level on

the lumbar MRI. Does anybody know how low in the spine that is?

It is hard to say if I had any neck or back problems before Lyme

disease, because it was only recently dx'd, but I'm sure I've had LD for

at least 10 yrs. I believe that I had a neck xray done prior to that,

and it was normal.

I'm not convinced that PT is the answer, so I'm in no hurry to try it.

Take care of yourself! Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Boy, {{{ Lovey}}}, you did it again! Thanks for the excellent info on

the spine. You are a gem! I suspected that L-5 would be very low...right

about where I had my botched spinal tap...hmmm...Not only did they find

dessication there, but a " tear " as well.

I also take Neurontin for the neuropathy. I don't know what I'd do

without it. Unfortunately, I've had to increase it lately. Luckily, I

started at a very low dose, so I have a long way to go. Thanks, again,

Joan LI, NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: lovey38@...

To Marta, Joan, et al from Lovey

The numbness/tingling pain in the hands is a symptom of neurological

lyme. I am on one 300mg capsule of Neurontin. It has helped a little,

but I feel I need the dosage increased. I have had lyme (Bb) for

probably 50 years - long before Steere & Burdorf identified it. It has

gone in/out of remission numerous times. I had to have L-5 disc removed

in 1970. Have never regretted having it done. L-5 is the lowest disc on

the spine just above S-1. L = lumbar; S = sacral. FYI I quote, " The

spine consists of a series of vertebrae extending from the skull down to

a terminal portion represented by the tail-bone (coccyx). The individual

vertebrae vary somewhat in size and appearance, depending upon their

location. Those in the neck are referred to as the cervical vertebrae,

those of the back as the thoracic or dorsal vertebrae, and those in the

small of the back as the lumbar vertebrae. A group of fused vertebrae

extending below the lumbar vertebrae composes the sacrum.............

Between the vertebrae are fibrous disks with a central, more gelatinous

portion called the nucleus pulposus. Occasionally the nucleus pulposus

can work its way out of its location and impinge on one of the spinal

nerves. This produces a radiating type of pain which may be quite

severe...........The chief dangers of fractures of the spine are the

possibility of compression of the spinal cord beneath. Such compression

leads to a variety of neurological symptoms which may progress from

weakness and pain to full paralysis. "

Hope this helps but doesnt scare you. Dealing with a spinal CORD

involvement may warrant having the surgery. Hoping to see all of you at

NIH next week. Lovey

On Thu, 28 Oct 1999 07:42:14 EDT lisa86@... writes:

> From: lisa86@...

>

> In a message dated 10/28/99 5:56:21 AM Eastern Daylight Time,

> mlmccoy@... writes:

>

> << low back pain especially when walking and standing, a trip to the

> store is

> a

> nightmare, and I must sit down to relieve it or lay down if home >>

>

> This is one of my most dreaded symptoms. My doctor is trying to

> explain this

> away as a panic attack, but I'm positive it's Lyme. Those store

> trips also

> trigger bad intestinal problems that require a trip to the store

> bathroom in

> a big hurry many times.

> -----------

> <<holding a book is hard, surprisingly typing is not too bad, yet

> holding a

> pen to write a check, or trying to fill my pill container>>

>

> I like to read in bed at night, but it is increasingly difficult to

> hold the

> book up where I can read it. I've had carpal tunnel surgery on both

> wrists

> and still have troubles like holding a pen, trying to knit ... I had

> not

> thought of this as a symptom of Lyme until now -- only feared that

> I'd need

> the surgery again.

> -------

> <>

>

> I was seeing a chiropractor earlier this year (which didn't help a

> whole

> lot). I told him I thought it was sciataca (L-4), but after x-rays,

> he said

> it was L-5, which is just below the sciataca.

> ---------

> I had some physical therapy a month ago (6 sessions), and they

> seemed to help

> in a small way. But if that's what they call managing pain, they

> need new

> management!!!

>

> (MI)

>

> ---------------------------

[Guest guest]

I've been on synthroid for twelve years. My doctor blames the Carpal tunnel

on nerve damage from the Lyme. The brace does help if I were it at night,

just not the quivering thumb which is just annoying not painful.

Thanks

Vicki

Re: [Lyme-aid] MRI'S - Joan

>From: BratDet@...

>

>In a message dated 10/28/99 1:13:48 PM Eastern Daylight Time,

>ferraroa@... writes:

>

><< SO when my doctor dx'd carpal tunnel and gave me a brace, I was

> relieved. If I wear it every night it helps, but not with the nerve

> quivering in my thumb. >>

>Vicki...I forget who has what associated disorder..Are you on

Synthroid?....I

>had a severe problem with CTS and needed a brace for a few weeks...but

after

>Synthroid was started....it improved 90%, and I haven't needed tthe brace

so

>I could sleep since last January....(needed it in Nov, and Dec) CTS is

>often a symptom of hypothyroid...<just a thought> B

>

[Guest guest]

Vicky,

Thank you for the kind thoughts. I know that we all have goals...getting

back to work or school, driving, or just being able to think clearly. I

just wanted everybody to know that I didn't mean to sound like I was

wining about not being able to ride.

Of course, it was something that I had hoped I would be well enough to

do one day. I hoped that I'd go into remission one day, and be able to

drive, donate my time to a local animal shelter, and possibly ride. Now

with the messed-up back and neck, I think I'll just concentrate on

getting pain relief, fighting this bug, and hopefully driving again.

It is a shame that many diseases get swept under the rug until a

celebrity comes down with the disease...but if that's the way it works,

I hope that a celebrity who has Lyme comes forward soon! My Best,

Joan

From: " Vicki & Ferraro (home) " <ferraroa@...>

Joan

I love the idea of saving horses at the same time you get to enjoy watching

them graze. But I have a better dream, that you'll not only do that one day,

but you'll also be able to ride. One thing about our inadequate medical

system, they are making great strides on spinal and disc injuries. We have

Reeves (partly) to thank for that. I say that with a little

sarcasm because it makes me mad that we need a Celebrity to get anything

done. When did this happen, when Reagan became president, or am I

just becoming aware of all these problems, and its always been this way. I

can't believe American's can be so shallow, even before I was sick, I tried

to contribute to good causes. This year as I was home on disability, I

answered every phone call and door to fund raisers, and couldn't say no to

one single Medical cause. Even though I can barely afford my own health

expenses. In the past I always donated when I could, but this year really

got me.

Joan, what you said about this list, is so true. I'm so glad I found it. My

first few months on disability I was extremely depressed and didn't even

think about support groups. Thought I could do this all on my own. I'm so

glad my doctor told me to look into it. Thank you all, you are my friends,

my family, my saviors!

One last note, the other night my husband asked if I gave out personal

information, and my name, etc. He was annoyed at me for doing so, I simply

replied - they are my family! He didn't say another word. Thanks again -

everyone.

Be well,

Vicki

Re: [Lyme-aid] MRI'S - Joan

Hi Vicki,

It's messages like yours that make me realize that I am not missing as

much in the " outside world " . The people on this list provide me with

support, encouragement, understanding and friendship. For all of that, I

am very grateful.

Horses were always very important to my my husband and me. We met at the

stable where I boarded my horse when we were in our teens. We'd kept

horses at our house until the last one passed, and I was too sick to

care for any more. Since we both can't ride anymore, he said that when

we retire, we can buy a number of acres. We can then rescue some horses

from the slaughterhouse, turn them loose, and watch them graze...I can't

wait... Thanks, Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

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/archive/lyme-aid

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To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Hi Lea,

What do you do to keep busy? I have my office work to do, and I enjoy

this list. Any other ideas? Feel Better, Joan

From: Memyo@...

In a message dated 10/27/99 5:19:55 AM Eastern Daylight Time,

mlmccoy@... writes:

<<

I had the lumbar and cervical MRI's on Fri. It was an open MRI, which

I'd had before, so they weren't bad...although I did keep my eyes closed

during the cervical one. What was painful, though, was lying still for

so long. The lumbar was 45 mins. and the cervical was 30 mins.

Anyway, the news wasn't good...I have arthritis in my neck, and discs C4

and C5 are herniated. I also have arthritis in my back, and another

herniated disc! There goes my hope of ever horseback riding again.

:-(

My LLMD increased the Plaquenil to help with the inflammation, as I am

maxed out on the Celebrex..., I remember you saying that your relief

from the Celebrex wore off. :-(( He referred me to a PT, but I am

going to see if I am covered for massage...that's all I can deal with

now.

It's depressing because now I know that it's not going away...that it's

worse than I thought. I had hoped that I'd be able to ride again, and

have some social interaction again. (All of my other neighbors work and

have families to tend to). But I guess that it was unrealistic to think

I'd be able to ride again...I can't even drive because of vertigo and

weakness. I guess I'll have to get used to being housebound. Anybody

else housebound? Sorry for the downer...Joan LI NY

>>

Hi Joan

Sorry to hear about your diagnosis. I qualify for being housebound and have

been so for many years.

hugs,

lea

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Yes, . there's always a trade-off...one thing that I will never give

up is my dogs and cats. I will continue to try to keep the ticks under

control...I also considered moving, since we live in a tick-infested

area, but when I kept hearing of people who lived in supposedly " safer "

areas getting Lyme, I decided that I would not give up my house and

beautiful property. Be well, Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: lisa86@...

Joan, what a dream! How lovely to look out on an open pasture and see horses

grazing! No surprise to me that so many of us with these symptoms are animal

lovers and lovers of the great outdoors. Always a tradeoff, isn't there?

(Michigan)

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

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the message and subject header.

[Guest guest]

In a message dated 10/29/99 4:46:59 PM Eastern Daylight Time,

Namkrats3@... writes:

<< Hi Lea,

What do you do to keep busy? I have my office work to do, and I enjoy

this list. Any other ideas? Feel Better, Joan

>>

Hi Joan:

No ideas as I generally must lie down due to severe weakness, fatigue,

diziness etc.

feel better too.

hugs,

lea