Re: Re:up date ()

[Guest guest]

I really hope you're able to get that done by now. I had a scan & MRI ( at

dif. times) & didn't show.I trully can't figure that out, so I went to ENT &

he sent for MRA & nothing, he was sorprised, he had told me he was almost

certain It was my artery inflamed & that 's what causes the hoarseness It gets

pretty bad.

He sent me to a friend surgeon cause he felt I should be checked for

carcinoids? . I tryed 3 times to get appmt. but couldn't get pass the

receptionist

as you HAD to have " previuos test " before you got to go to him!. I insisted

that It was the reason why he sent me to him as his friend to check me FOR that

because It had NOT been done. but she'd refused. I was goona write my ENT a

letter explainning why I didn't GO, but it was then I saw the show & felt It

was most likelly wht I had, & went to see the RD a member recomnded here in

Columbus. I'm in Ohio.

So thats were I'm at now, I first went to her in June (+0-) & tryed the 3

stuff, that have help on the atacks NOT being as severe, but not enought to get

me funtional. So she seemed a bit turned off last time I said " about the

same " & told me to stop every thing but 10 mg Pred. & she 'd request the

payament permission for Rituxan, as it was the least dangerous on peolple 'd had

severe lung infeccions.

I really feel it has to help as I feel it is pretty much last

resort.( I've done this for 5 yrs. & I'm emocionally spent ( let alone

Phisically)

I have this nagging feeling this all coould be realated to Thyroid

problems, & I do have multiple nodules

But that is a long story. for another time.

I'm only taking Vitamin D on my own cause I had deficiency last yr. Ialso

got lost of other med, problems like the FM, deteriorated discs on neck & back.

I've only taken Hydrocodone till now. The pain specialist changed it to

percocet. I also resisted that idea cause I didn't want them to JUST cover up,

the problem I wanted them to get to the source. Now I cannot stand the pain

about 50,60 % of the time. I don't knnow how they'll deal wt. that. I'm

hopefulll once they know how to treat this it may take care of the pain problem

for

the most part.

But once they get me on a med . that works for this RA. ( she does know I

got inflamatory RA)I do want to get back on this lump, I just felt it was

associated wt. wahtever condition i do have, because It get inflamed about 2x

amo.

When hormones fluctuate. It took me a whhile to put that together, but

there's no doubt.

The pain specialist told me that the hormones still afect many, many thing

even after a hysterectomy. I do have my ovaries but he said it was not the same

after the take the Uterus out nothing circulates through the body the same.

keep an eye on your flares & see if they coinside wt. hormonal X's.

Thanks for your support, & hope I can help you the same way.

Exuse my terrible grammar. This is my second languague. & I feel just too

inflamed in the butt to sit any longer & use spell check !! Sorry.

Huggs & best wishes for a good week end.

Vivien

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

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[Guest guest]

Sorry the reply is late, I have not had a good last couple of days. Good news

yesterday my fever finally broke. I am not going to do the Cytoxan for now, it

was put on hold. My rheumy has been consulting with a Dr. Mason at the Mayo

clinic and he wants to try Kineret, MTX,Plaquenil, and of course bump up my

steroid dose. I guess we are going to start that tomorrow. I am going to have to

cut todays visit short.

Stay well and hopefully pain free

Lots of Hugs,

________________________________

To: Stillsdisease

Sent: Friday, December 12, 2008 11:49:44 PM

Subject: Re: Re:up date ()

I really hope you're able to get that done by now. I had a scan & MRI ( at

dif. times) & didn't show.I trully can't figure that out, so I went to ENT &

he sent for MRA & nothing, he was sorprised, he had told me he was almost

certain It was my artery inflamed & that 's what causes the hoarseness It gets

pretty bad.

He sent me to a friend surgeon cause he felt I should be checked for

carcinoids? . I tryed 3 times to get appmt. but couldn't get pass the

receptionist

as you HAD to have " previuos test " before you got to go to him!. I insisted

that It was the reason why he sent me to him as his friend to check me FOR that

because It had NOT been done. but she'd refused. I was goona write my ENT a

letter explainning why I didn't GO, but it was then I saw the show & felt It

was most likelly wht I had, & went to see the RD a member recomnded here in

Columbus. I'm in Ohio.

So thats were I'm at now, I first went to her in June (+0-) & tryed the 3

stuff, that have help on the atacks NOT being as severe, but not enought to get

me funtional. So she seemed a bit turned off last time I said " about the

same " & told me to stop every thing but 10 mg Pred. & she 'd request the

payament permission for Rituxan, as it was the least dangerous on peolple 'd had

severe lung infeccions.

I really feel it has to help as I feel it is pretty much last

resort.( I've done this for 5 yrs. & I'm emocionally spent ( let alone

Phisically)

I have this nagging feeling this all coould be realated to Thyroid

problems, & I do have multiple nodules

But that is a long story. for another time.

I'm only taking Vitamin D on my own cause I had deficiency last yr. Ialso

got lost of other med, problems like the FM, deteriorated discs on neck & back.

I've only taken Hydrocodone till now. The pain specialist changed it to

percocet. I also resisted that idea cause I didn't want them to JUST cover up,

the problem I wanted them to get to the source. Now I cannot stand the pain

about 50,60 % of the time. I don't knnow how they'll deal wt. that. I'm

hopefulll once they know how to treat this it may take care of the pain problem

for

the most part.

But once they get me on a med . that works for this RA. ( she does know I

got inflamatory RA)I do want to get back on this lump, I just felt it was

associated wt. wahtever condition i do have, because It get inflamed about 2x

amo.

When hormones fluctuate. It took me a whhile to put that together, but

there's no doubt.

The pain specialist told me that the hormones still afect many, many thing

even after a hysterectomy. I do have my ovaries but he said it was not the same

after the take the Uterus out nothing circulates through the body the same.

keep an eye on your flares & see if they coinside wt. hormonal X's.

Thanks for your support, & hope I can help you the same way.

Exuse my terrible grammar. This is my second languague. & I feel just too

inflamed in the butt to sit any longer & use spell check !! Sorry.

Huggs & best wishes for a good week end.

Vivien

************ **Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)

[Guest guest]

hugs to ya and lets hope they find your mix to get things under some what

controll for you so tell hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 To learn about Stills Disease  http://www.stillsdisease.org/stills_info

For conservitive minded people  http://www.americac2c.org " If  we ever forget

that we're one nation under God, then we will be a nation gone  under. " ~

Reagan

 

 In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.~Cicero

                                                   

" The  most terrifying words in the English language are: I'm from the

government  and I'm here to help. "    ~  Reagan 

[Guest guest]

I must have an email monster, all day I have been getting things from 2 days

ago, who knows. On Kineret, the specialty pharmacy that does my prescriptions

said they are waiting on my insurance to give the ok, said they had all the

stuff from my rheumy, and the lady I talked with said she felt for sure that

they would ok it by tomorrow. So I hope I can start by Monday..

Today has not been a good day, fever has come back, and my left hip is really

hurting. Rheumy threatened me with going to the hospital if I am not any better

by tomorrow. I have had an infection in that hip before, I don't want to go

through an infected hip again.

I am going to try to get some sleep if I can get comfortable.

Everyone stay well,

________________________________

To: Stillsdisease

Sent: Monday, December 15, 2008 1:00:54 PM

Subject: Re: Re:up date ()

Sorry I didn't see you mail till today. I'm not sitting on PC. How long will

it take to get your aproval for Kineret? I have a friend on it & has helped

her a lot. She had to get off it at hthe end of yr. for ins. reazons & her

pain came back. After being on it again for 2, 3 injections she could tell it

began to improved.

So I think is a good choice. It's amaziing that they'll continue on the MYX

also. ( Shes's also on the Plaquenil). She sees Dr. Quinceno's who was

parteners wt. the Kins of Stills in TX. & wrote a book & they're both doing

reseach. So I do believe you're on the right track on their choice.

Hope you feel better soon, glad to hear your fever brooke !

Keep me on the loop.

Warm Huggs

Vivien

************ **Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)

[Guest guest]

Best of luck with getting the Kineret and I hope you don't have a hip

infection. Try to get lots of rest and let us know how it's going if you can.

We'll be thinking of you,

Re: Re:up date ()

On Kineret, the specialty pharmacy that does my prescriptions said they are

waiting on my insurance to give the ok, So I hope I can start by Monday..

Today has not been a good day, fever has come back, and my left hip is really

hurting.

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