Good News

[Guest guest]

, OH thanks for sharing the WONDERFUL GOOD NEWS!!! We always love to

hear good stories. !!! A lot of times people don't want to share their good

news because they think we will feel bad and maybe get depressed because they

can't decrease or get rid of a flare. How wrong that is!! We NEED to hear

the good stories. It always gives me more hope.

I'm really happy for you and will cross my fingers, toes and eyes for you.

LOL

Know you are in my thoughts and prayers and give your little cone headed,

stitched pooch a big hug for me... Tell him I love him.

hugs

PS had her knee surgery today and as of now is doing great. Not in

any great pain so far. Hope it is still the same tomorrow.

[Guest guest]

In a message dated 9/24/02 6:26:01 PM Pacific Daylight Time,

biglou5685@... writes:

<< This time she got a cone and not only that

I put a neon pink and purple infants swimsuit on her to be extra safe. She

looked hilarious, but it worked. >>

Oh Sandy. lol that is just too funny. Only you could come up with that.

lOL Did you make the swimsuit??? LOL

Hope she is doing okay now... has she been swimming yet?? She can come and

swim here any day as long as you come too.!! I sure miss you. So glad to be

hearing from you again. My thoughts are always of you and your wonderful

family.

hugs

[Guest guest]

,

That is good news, Congrats!!...I love to hear good news.

Glad your dog is getting her stitches out.

My little poodle had surgery a few months ago and the incision ran all the way down her tummy. They did not give us a cone and sure enough, 4 days later she pulled half her staples out. Had to rush her back to the vet and they had to reclose the incision. This time she got a cone and not only that, I put a neon pink and purple infants swimsuit on her to be extra safe. She looked hilarious, but it worked.

Sandy

-- good news

Well, I thought I'd go against the tide here and post some good news for a change! My liver enzymes are lower, so it looks like getting rid of the NSAID's that I was on was a great idea and I'll be able to raise the Metho back up a bit. I see Dr Buckner next Tuesday, so we can develop this plan further, but I'm hoping that it leads to decreasing my Prednisone to below 20 mgs. for the FIRST TIME!!!! Keep your fingers crossed with me, please!Everyone, take care and have a restful day. MP.S. My conehead dog sends her best to everyone and is looking for a new home. One where people don't think it's humorous when a mistreated animal bumps her enlarged, conehead against the wall and furniture constantly. She's doing fine and the cone and stitches come off on Friday. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Ok Sandy,

I wish I had gotten to see a picture of your poor pup in that outfit!

When I came home tonight, had pulled the cone and her collar

off of her head, but luckily hadn't done anything to her suture.

> ,

> That is good news, Congrats!!...I love to hear good news.

> Glad your dog is getting her stitches out.

> My little poodle had surgery a few months ago and the incision ran

all the

> way down her tummy. They did not give us a cone and sure enough, 4

days

> later she pulled half her staples out. Had to rush her back to the

vet and

> they had to reclose the incision. This time she got a cone and not

only that

> I put a neon pink and purple infants swimsuit on her to be extra

safe. She

> looked hilarious, but it worked.

>

> Sandy

>

> -- good news

>

> Well, I thought I'd go against the tide here and post some good

news

> for a change! My liver enzymes are lower, so it looks like

> getting rid of the NSAID's that I was on was a great idea and I'll

be

> able to raise the Metho back up a bit. I see Dr Buckner next

> Tuesday, so we can develop this plan further, but I'm hoping that

it

> leads to decreasing my Prednisone to below 20 mgs. for the FIRST

> TIME!!!! Keep your fingers crossed with me, please!

> Everyone, take care and have a restful day.

> M

> P.S. My conehead dog sends her best to everyone and is looking for

a

> new home. One where people don't think it's humorous when a

> mistreated animal bumps her enlarged, conehead against the wall and

> furniture constantly. She's doing fine and the cone and

stitches

> come off on Friday.

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED

> HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING

> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND

> ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT

MAYBE

> DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Hi ,

No, I did not make the swimsuit. LOL

I keep a supply of suits at my house since we have 2 pools in our development. If I have kids over I usually have a suit that will fit them if they would like to go to the pool.

How are you and doing today? Hope you are both resting.

Hugs,

Sandy

Oh Sandy. lol that is just too funny. Only you could come up with that. lOL Did you make the swimsuit??? LOL Hope she is doing okay now... has she been swimming yet?? She can come and swim here any day as long as you come too.!! I sure miss you. So glad to be hearing from you again. My thoughts are always of you and your wonderful family. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Wow that is fast! I hope and pray that the Enbrel works wonders for you!

Lots of LoveGlenda

[Guest guest]

HOORAY!!!!!!!!!!!

Good News

WE'VE GOT HIM!!!!

Homepage: http://groups.yahoo.com/group/Graduate-OSSG

Unsubscribe: mailto:Graduate-OSSG-unsubscribe

[Guest guest]

Dear Cyndi,

Whew what a relief. : )

Love,

w

[Guest guest]

Dear ,

Glad everything was resolved and you are able to get your

surgery. Take care of yourself and get plenty of rest. Talk to you

soon.

Love,

w

>

> After stressing and crying all week my doctor just told me that he

> had finally gotten the approval from my insurance company that was

> necessary to go ahead withthe tp/ict. I appreciate all of ya'lls

> kind words and support I dont think I could have handled that huge

> dissappointment without ya'll.

>

> thank you very much. So now we are back to what the heck am I

going

> to wear?..lol

> Love

> Chrissy

[Guest guest]

This is great news! I am going to go and check our her photo now.

Jenn

> Hello to all,

> I have talked to my family and shared a lot of the information

that

> you all are sharing with me. My mother said she is going to try to

go

> to the conference. After stressing the importance of sign to my

mother

> and sister and sharing some of the posts about signing my mother

got

> help through the school that maddie goes to they have this signing

> group that comes out 1 a month and works with maddie and my faimly

on

> sign. My mother says that maddie can sign please, no, more, juice,

and

> thank you. I am really excited about this...I was talking with my

> sister the other day quizing her on some signs and she told me how

to

> sign more and she said maddie started signing it. THank you all!!

My

> sister says Maddie laughs when you tell her no or to stop. My

sister

> says she doesn't think Maddie quite understands those signs. I

don't

> know. I posted some pictures of madyseon so be sure to check them

out!

[Guest guest]

Maddie is adorable! Glad to hear the signing is going well. picked

up on it VERY quickly when we started using it. I think it's a relief for

the kids to finally be able to communicate!

Pat (g-ma to , RSS, 3 yrs 6 months old, 23#, 33 " , G-tube, GHT)

[Guest guest]

,

Wow. That is awesome. I am glad that they are starting sign with her

and I really hope they can come to the convention. Too much great

information to miss. I looked at Madyseon's pictures and she is a

doll. She is lucky to have such a great Aunt to be looking for this

information and helping her family out. Good job, . Hopefully

they will come and learn more too. It would be great if you could come.

Take care,

Jodi R.

's mom

> Hello to all,

> I have talked to my family and shared a lot of the information that

> you all are sharing with me. My mother said she is going to try to go

> to the conference. After stressing the importance of sign to my

mother

> and sister and sharing some of the posts about signing my mother got

> help through the school that maddie goes to they have this signing

> group that comes out 1 a month and works with maddie and my faimly on

> sign. My mother says that maddie can sign please, no, more, juice,

and

> thank you. I am really excited about this...I was talking with my

> sister the other day quizing her on some signs and she told me how to

> sign more and she said maddie started signing it. THank you all!! My

> sister says Maddie laughs when you tell her no or to stop. My sister

> says she doesn't think Maddie quite understands those signs. I don't

> know. I posted some pictures of madyseon so be sure to check them out!

[Guest guest]

Hi!

What a great aunt! You are helping Maddie quite a bit. Don't give up,

if your sister is open to signing she might be open to more. I hope

she can bring Maddie to the conference! She might be able to get a

scholarship too and Maddie can be around o ther kids. Obviously Maddie

wants to communicate just didn't know how.

AND. Most importantly - Maddie is ADORABLE!

, mom to 5 and Emerence 29 mos, 21 lb 32.5 "

> Hello to all,

> I have talked to my family and shared a lot of the information that

> you all are sharing with me. My mother said she is going to try to go

> to the conference. After stressing the importance of sign to my

mother

> and sister and sharing some of the posts about signing my mother got

> help through the school that maddie goes to they have this signing

> group that comes out 1 a month and works with maddie and my faimly on

> sign. My mother says that maddie can sign please, no, more, juice,

and

> thank you. I am really excited about this...I was talking with my

> sister the other day quizing her on some signs and she told me how to

> sign more and she said maddie started signing it. THank you all!! My

> sister says Maddie laughs when you tell her no or to stop. My sister

> says she doesn't think Maddie quite understands those signs. I don't

> know. I posted some pictures of madyseon so be sure to check them out!

[Guest guest]

hey megan!!

thats really cool!!!

jodie c

[Guest guest]

! Awesome news! How exciting. Yes - please keep us posted!

- H

>

> Hi,

>

> Everyone with bad news you are in my thoughts....a little good

news

> to brighten our day!

>

> Emerence's geneticist from Children's Hospital Boston is superb -

> just so very highly respected by other docs and loved by all the

> RSS/SGA families that see her (we all gush over her - yes, it is

Dr.

> Irons for all you Dr. Irons fans out there!). ANYWAY, I had

emailed

> her the results of our informal pregnancy surveys (she specializes

> also in prenatal genetics) and she thought we had really good

info,

> leaning towards good enough to be published with the required

> analysis etc. So, after her genetics fellows finally finished

their

> boards and got settled back into work she emailed them all about

who

> would be willing to take up the project for real. And she got

> three offers from her fellows so she took the first responder (who

> she also told me today was one of her best fellows)! I will keep

> you all informed as to what happens!

>

>

>

[Guest guest]

Amber

We have a appointment on March 13. Give me a call or email me. My number is

or email is bltarver@.... We are going to stay at the Haven

House. I talked to Gail in family services she made all my arrangement. I end

up this time not paying for nothing. I be flying with Wings of Hope. Please

call me later or email maybe we can meet when we are there. Try to stay at the

Haven House they are pretty cheap if you have to pay, they have food, it's

almost like the Mcdonald House I was told but they take reservations, so

I have already a room for us with a crib. Try to contact me today.

Larissa and 7-15-05

Amber wrote:

Natha has got an Appointment to see Dr Dobbs. on March 13th. now trying

to figure out how we are goin to get up there. Andy is working on it

and supposed to call me back tomorrow on that. just thought i would let

yall know. Everyone has been a great help on this board.

Im glad ther eis a place like this for us that dont know anything about

it to come and talk to ppl that have experienced it all

Amber

MOther to

born 12-6-05 BCF

[Guest guest]

I saw the neurologist today, who told me that the NS is in remission. The ACE

results were well below the max and I am to reduce the Preds over the next few

weeks. Thank the Lord for His mercy.

Unfortunately, there is also some not good news, in that there has been quite a

lot of deterioration in the spine, which means a trip to the orthopaedic surgeon

tomorrow, with the prospect of some scaffolding. But, thank the Lord, it is a

known procedure that is successful - and we know that the problem can be solved.

I'll be in touch as things develop.

God bless,

[Guest guest]

Glad to hear the good news.

To: Neurosarcoidosis Sent: Mon, January 31, 2011 6:05:39 PMSubject: Good News

I saw the neurologist today, who told me that the NS is in remission. The ACE results were well below the max and I am to reduce the Preds over the next few weeks. Thank the Lord for His mercy.Unfortunately, there is also some not good news, in that there has been quite a lot of deterioration in the spine, which means a trip to the orthopaedic surgeon tomorrow, with the prospect of some scaffolding. But, thank the Lord, it is a known procedure that is successful - and we know that the problem can be solved.I'll be in touch as things develop.God bless,

[Guest guest]

, That is great news, I am so happy for you, I pray it stays in remission, and that your surgery goes well.  Please do stay in touch and let us know how your doing from time to time.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I saw the neurologist today, who told me that the NS is in remission. The ACE results were well below the max and I am to reduce the Preds over the next few weeks. Thank the Lord for His mercy.

Unfortunately, there is also some not good news, in that there has been quite a lot of deterioration in the spine, which means a trip to the orthopaedic surgeon tomorrow, with the prospect of some scaffolding. But, thank the Lord, it is a known procedure that is successful - and we know that the problem can be solved.

I'll be in touch as things develop.

God bless,

[Guest guest]

Thank you very much, Marla. Many thanks also for the encouragement and

advice that you and everyone else in the group has given over the past

months.

Best regards,

On Mon, 31 Jan 2011 23:35:26 -0700, Marla Bramer

wrote:

> , That is great news, I am so happy for you, I pray it stays in

> remission, and that your surgery goes well.  Please do stay in touch

> and let us know how your doing from time to time.

>

> Marla

> Just one day at a time, That's all God ask of us. for there never

> really is a tomorrow, as that too

> is just today:)  

>

>

>

>  

>

> I saw the neurologist today, who told me that the NS is in remission.

> The ACE results were well below the max and I am to reduce the Preds

> over the next few weeks. Thank the Lord for His mercy.

>

> Unfortunately, there is also some not good news, in that there has

> been quite a lot of deterioration in the spine, which means a trip to

> the orthopaedic surgeon tomorrow, with the prospect of some

> scaffolding. But, thank the Lord, it is a known procedure that is

> successful - and we know that the problem can be solved.

>

> I'll be in touch as things develop.

> God bless,

>

>

>

>

>

[Guest guest]

Great news, !

Good News

I saw the neurologist today, who told me that the NS is in remission. The ACE

results were well below the max and I am to reduce the Preds over the next few

weeks. Thank the Lord for His mercy.

Unfortunately, there is also some not good news, in that there has been quite a

lot of deterioration in the spine, which means a trip to the orthopaedic surgeon

tomorrow, with the prospect of some scaffolding. But, thank the Lord, it is a

known procedure that is successful - and we know that the problem can be solved.

I'll be in touch as things develop.

God bless,

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Message Archives:-

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Members Database:-

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[Guest guest]

, I don't remember what surgery you need, but hope it goes well.

Re: Good News

Thank you very much, Marla. Many thanks also for the encouragement and

advice that you and everyone else in the group has given over the past

months.

Best regards,

On Mon, 31 Jan 2011 23:35:26 -0700, Marla Bramer

wrote:

> , That is great news, I am so happy for you, I pray it stays in

> remission, and that your surgery goes well.  Please do stay in touch

> and let us know how your doing from time to time.

>

> Marla

> Just one day at a time, That's all God ask of us. for there never

> really is a tomorrow, as that too

> is just today:)  

>

>

>

>  

>

> I saw the neurologist today, who told me that the NS is in remission.

> The ACE results were well below the max and I am to reduce the Preds

> over the next few weeks. Thank the Lord for His mercy.

>

> Unfortunately, there is also some not good news, in that there has

> been quite a lot of deterioration in the spine, which means a trip to

> the orthopaedic surgeon

[Guest guest]

Hi Rose,

That hadn't been decided yesterday! Today I got to see the orthopaedic

surgeon, which is pretty effeicient on his part. He has diagnosed

spinal stenosis with disc protrusion and ligamentum flavium hypertrophy.

He will be undertaking a disc decompression in March, as it is not

hugely urgent and that fits in with some other (non-medical) stuff I

need to do in February.

Best regards,

On Tue, 1 Feb 2011 18:04:53 +0000, " Rose "

wrote:

> , I don't remember what surgery you need, but hope it goes well.

> Re: Good News

>

> Thank you very much, Marla. Many thanks also for the encouragement and

> advice that you and everyone else in the group has given over the past

> months.

>

> Best regards,

>

>

> On Mon, 31 Jan 2011 23:35:26 -0700, Marla Bramer

> wrote:

>> , That is great news, I am so happy for you, I pray it stays in

>> remission, and that your surgery goes well.  Please do stay in touch

>> and let us know how your doing from time to time.

>>

>> Marla

>> Just one day at a time, That's all God ask of us. for there never

>> really is a tomorrow, as that too

>> is just today:)  

>>

>>

>>

>>  

>>

>> I saw the neurologist today, who told me that the NS is in remission.

>> The ACE results were well below the max and I am to reduce the Preds

>> over the next few weeks. Thank the Lord for His mercy.

>>

>> Unfortunately, there is also some not good news, in that there has

>> been quite a lot of deterioration in the spine, which means a trip to

>> the orthopaedic surgeon

>

>

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

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Hi Rose,

Thank you very much for suggesting I take a look at the book on back

sense. On the UK Amazon site, there was a preview, so I had a good look

at the approach that he takes. It makes a lot of sense for many people,

especially those where the issue is down more to muscle pain that will

almost certainly sort itself out. It is one of God's miracles that he

has given us bodies that can repair themselves with time. I am

absolutely sure that He also heals miraculously and spontaneaously - I

have seen that happen with back issues before.

I have been seeing this particular surgeon now for a couple of years,

on and off, and he has hinted in the past that there will come a time

when work will have to be done. I have had three steroid injections in

the past. In fact, he said that he would have done that again this

time, had I not already been on preds. Looking at the MRI, the spinal

chord at L4/L5 and at L5/S1 is so squished that you cannot make out the

individual nerves, nor is there any fluid in there. One of the

vertibrae is so damaged that the disk has penetrated vertically halfway

up into it.

I do trust this man and believe that God heals through surgical

intervention as well. To my mind, this is just as much of a miracle as

if He just did it. With the way the MRI looked, I have no doubts that

there is no other way, although I do recognise that there are always

risks involved. Whatever happens, we have a great Protector, who always

has a purpose behind everything that happens to us. Everything works

for the good....

Best regards,

On Wed, 2 Feb 2011 20:39:30 +0000, " Rose "

wrote:

> , I hope you have gotten good info on risks of the surgery &

> what the odds of success are. I have severe degenerative disc

> disease--all the lumbar & cervical discs & most of thoracic. I have

> stenosis & disc compression causing pretty constant back & left leg

> pain. I almost had surgery a few years ago, but a doctor friend talked

> me into trying MBSR (Mindfulness-Based Stress Reduction) & it eased

> the pain enough to avoid surgery. I actually took classes, but there

> is plenty of info on the Web. I have a friend who's had similar

> problems for years. I didn't know until she had already had the

> surgery or I would have tried to talk her out of it. She had a disc

> decompression, which actually worsened her leg pain. After months of

> suffering & being unable to work more than 3-4 hrs a day, she is

> having more surgery. This time they will remove the disc & fuse her

> spine. This procedure is not always successful, but I hope & pray that

> it is. If your main symptom is back pain, you ha!

> ve a better chance of symptom relief than if leg pain is the big

> problem. In my case I can tolerate the back pain much better than the

> leg pain, so even if I'd had surgery & it helped my back, I'd still be

> in a lot of pain. Seeing what my friend Donna is going thru makes me

> very glad I didn't do it. Now there are some times the surgery is

> vital--if you are having loss of bowel or bladder function, footdrop,

> etc. But that is an emergency situation & they wouldn't wait for

> weeks. It's so tempting to think that you can have surgery & fix the

> problem. Well, that's true for appendicitis, but not back problems.

> The unfortunate thing is that you can always find a surgeon to do it.

> When my surgeon of choice refused because she felt the chance of

> success did not outweigh the risk, I found another surgeon that agreed

> to operate. I'm thankful that my friend talked me out of it. Now I

> have known people that were very happy with the results of back

> surgery, but I know many more who regr!

> etted it. So my unsolicited advice is to do lots of your own research,

> get another opinion (not a doc your surgeon recommends as they are

> likely to have similar philosophies), and get a book called " Back

> Sense. " i can't think of the authors, but you can find it on Amazon. I

> got a used copy & have loaned it out to several people. Well, that's

> my story & I'm stickin' to it!

> Re: Good News

>>

>> Thank you very much, Marla. Many thanks also for the encouragement and

>> advice that you and everyone else in the group has given over the past

>> months.

>>

>> Best regards,

>>

>>

>> On Mon, 31 Jan 2011 23:35:26 -0700, Marla Bramer

>> wro

>

>

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

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Bless you and congratulations!

What does ACE stand for?? What does it test?? Where is your NS??

To: Neurosarcoidosis Sent: Mon, January 31, 2011 5:05:39 PMSubject: Good News

I saw the neurologist today, who told me that the NS is in remission. The ACE results were well below the max and I am to reduce the Preds over the next few weeks. Thank the Lord for His mercy.Unfortunately, there is also some not good news, in that there has been quite a lot of deterioration in the spine, which means a trip to the orthopaedic surgeon tomorrow, with the prospect of some scaffolding. But, thank the Lord, it is a known procedure that is successful - and we know that the problem can be solved.I'll be in touch as things develop.God bless,