Update

[Guest guest]

Hi Katy!

Wish you were closer...but The Dalles is pretty close (I've been there

once). My hepatologist is Dr. Carol Murakami, who graduated from UW,

interned at Harborview, and is currently practising at Minor and

Medical Center as well as at Swedish Hospital. I also sought a second

opinion (but didn't let Dr. Murakami know because I don't want her to

misunderstand) from Dr. Gilbert who has more years under his belt, and

was voted one of the top doctors in his field (Hepatology abd

Gastroenterology), and he fully agreed with Dr. Murakami's protocol for me,

which is presently no prednisone and 75mg Imuran.

I was irritable on high doses of the Prednisone (when I was first dx), and I

would come home at night from work around 8-9pm sometimes, and I want to

clean house (TOO MUCH ENERGY!)...but be careful and force yourself to rest

and sleep enough no matter how energetic you feel...'cos that's FALSE

energy, and that's why we feel so drained after coming down and off of

Prednisone, because our body has reduced its production of natural steroid

(cortisol).

Hey, keep in touch...if there's any info you need from Seattle, or anything

at all, you can call me at 206-365-4681.

>From: " katydid562002 " <katydid562002@...>

>Reply-

>

>Subject: [ ] Update

>Date: Wed, 03 Jul 2002 17:54:50 -0000

>

>Hi Everyone!

>I am learning lots from your postings. Aiesha, I live in Bellingham

>for at least a few more weeks and then am moving to The Dalles,

>Oregon to live with my mother. I am filing for disability. The

>paperwork is in progress. Who is your hepatologist? I had Dr. Tung

>when I was at the U of W for my shunt surgery recently. I appreciate

>your nutrition ideas. Amber, I am one of those that get " manic " on

>high doses of Prednisone (Solu-Medrol is IV and IM form.) Since I

>came out of remission this last month, the doctor gave me a burst of

>Prednisone from my usual 10mg/day to 40mg/day for 5 days and then

>taper down every 5 days until back down to 10. We may have to add

>Cellcept (Imuran dropped my platelets) but I think by taking away

>some stress that I will be able to maintain on 10mg Prednisone/day.

>I feel like I am crawling out of my skin at times and get real shakey

>and can't sleep.Itwas more of a hyper-experience in the hospital.I

>would talk and talk and talk and never sleep.They were ready to put a

>sock in my mouth! I am down to 30mg a day now and going down.

>This increase in Prednisone has also caused my blood sugars to go

>wild. I am now on a sliding scale of reg insulin shots. Had blood

>tests yesterday. Everyone reacts to medication differently. Dr.

>gave me Atarax to counteract itching and agitation and it helps.

>

>To all of you that are going through tough times right now, know that

>my prayers are with you and your loved ones. You are very brave and

>strong and courageous. I feel so blessed to be a part of this group.

>/dxIAH 1988/recent distal spleno-renal shunt surgery.

>

>

>

[Guest guest]

OH MY GOSH! I passed through The Dalles on my way north last week! I can't

believe I missed everyone!

debby

[ ] Update

> >Date: Wed, 03 Jul 2002 17:54:50 -0000

> >

> >Hi Everyone!

> >I am learning lots from your postings. Aiesha, I live in Bellingham

> >for at least a few more weeks and then am moving to The Dalles,

> >Oregon to live with my mother. I am filing for disability. The

> >paperwork is in progress. Who is your hepatologist? I had Dr. Tung

> >when I was at the U of W for my shunt surgery recently. I appreciate

> >your nutrition ideas. Amber, I am one of those that get " manic " on

> >high doses of Prednisone (Solu-Medrol is IV and IM form.) Since I

> >came out of remission this last month, the doctor gave me a burst of

> >Prednisone from my usual 10mg/day to 40mg/day for 5 days and then

> >taper down every 5 days until back down to 10. We may have to add

> >Cellcept (Imuran dropped my platelets) but I think by taking away

> >some stress that I will be able to maintain on 10mg Prednisone/day.

> >I feel like I am crawling out of my skin at times and get real shakey

> >and can't sleep.Itwas more of a hyper-experience in the hospital.I

> >would talk and talk and talk and never sleep.They were ready to put a

> >sock in my mouth! I am down to 30mg a day now and going down.

> >This increase in Prednisone has also caused my blood sugars to go

> >wild. I am now on a sliding scale of reg insulin shots. Had blood

> >tests yesterday. Everyone reacts to medication differently. Dr.

> >gave me Atarax to counteract itching and agitation and it helps.

> >

> >To all of you that are going through tough times right now, know that

> >my prayers are with you and your loved ones. You are very brave and

> >strong and courageous. I feel so blessed to be a part of this group.

> >/dxIAH 1988/recent distal spleno-renal shunt surgery.

> >

> >

> >

[Guest guest]

Becki,

I'm glad to hear that is doing some better. I cried when I read

how bad he was and that they upped the pred. Since Logan isn't on that I

don't fully understand the problem with kids taking it,but I was sad that

you were sad. I read you post about the pogon stroller and got on that

site and looked it up. Logan only weighs 35 lbs (at the age of 5 !! ) so

I usually just carry him,,but I'm a pretty small girl (hehe,girl,I'm 32)

I'm only 4'11 " ,and he feels like he weighs a ton. I haven't even thought

about him not fitting into his stroller anymore,but I bet he is too tall.

By the way,have you checked into buying a used stroller ? There is a

website I was on once and it had a section for people to sell there

things when they were done with it. If you are interested,I'll try to

find it again.

Logan has been doing really well for about a week now. Today he woke up

with his feet hurting a little,and his knee went out a couple of

times,,but at least nothing major. If we can just make it through 1 week

of school without any problems,,,he starts on Weds. I'm gonna be bawling

my eyes out,,my baby in Kindergarten.

Hope is feeling good.

Kim and Logan 5

[Guest guest]

Hi Kim,

I had to send Shelby off to Kindergarten last year and its hard.I cried and

cried but she was so excited.She now lives for school,she would go all year

everyday including weekends if she could.I understand completely though

about sending a special needs child to school though.The teacher we were

hoping to get got bumped up to first grade,so s new teacher doesnt have

a clue who we are.I have printed out a bunch of stuff from the Arthritis

Foundation and the Stills Foundation to set up a folder to give to her.Ive

got to make copies to give to the principal,music teacher,PE ,Art,etc.We are

lucky in the fact that our school has alot of handicap children,probably

because we are one of two schools in our city that has special ed

preschool.I think I told you got into the regular program.So hes

excited to be in the bigboy 4yr old class and not with 3yr olds.Glad to hear

Logan is not having to much troubles.Are Logans knees double jointed

also?Poor guy,I hope he does ok at school also.

Love Becki and 4systemic

Re: update

>Becki,

> I'm glad to hear that is doing some better. I cried when I read

>how bad he was and that they upped the pred. Since Logan isn't on that I

>don't fully understand the problem with kids taking it,but I was sad that

>you were sad. I read you post about the pogon stroller and got on that

>site and looked it up. Logan only weighs 35 lbs (at the age of 5 !! ) so

>I usually just carry him,,but I'm a pretty small girl (hehe,girl,I'm 32)

>I'm only 4'11 " ,and he feels like he weighs a ton. I haven't even thought

>about him not fitting into his stroller anymore,but I bet he is too tall.

>By the way,have you checked into buying a used stroller ? There is a

>website I was on once and it had a section for people to sell there

>things when they were done with it. If you are interested,I'll try to

>find it again.

> Logan has been doing really well for about a week now. Today he woke up

>with his feet hurting a little,and his knee went out a couple of

>times,,but at least nothing major. If we can just make it through 1 week

>of school without any problems,,,he starts on Weds. I'm gonna be bawling

>my eyes out,,my baby in Kindergarten.

> Hope is feeling good.

>Kim and Logan 5

>

>

>

>

[Guest guest]

Hi Becki,

I was so happy to hear that the recently increased pred seems to be helping Dave's symptoms pretty well without all of a sudden bringing on all of those negative side effects that we come to despise so much. Not too long now, until 's back to the doctor for his next ankle injection. You guys will be in our thoughts. I hope the procedure goes well and that his ankle inflammation is resolved this time around .... at least for some good length of time. That would be great.

I can hear the school bells ringing, too : ) Kayla begins on Friday, while Josh flies out to Oahu for the JRA Camp Weekend and then starts school on Monday. Tonight is the last night the children can stay up late. Have to get back on schedule : ) I was a little sad to read that is not able to have the teacher you were hoping for. Maybe next year? Maybe she will have spoken to his kindergarten teacher, too. Good luck at your upcoming parent/teacher meetings. It sounds like you're well prepared : )

Aloha,

Georgina

----- Original Message -----

From: Allan Larson

Hi all,Its only 9:30 so to early to tell how s day will go,but he woke up with no stiffness and said he feals much better.Its still kind of dark in the house,but I just peaked at his ankle and I think alot of the swelling is down.I was getting pretty nervous,because he has still been having alot of limping and pain and trouble sleeping.I dont know what we have done if the increase didnt help.This time around is differant, is not crying and begging for food,he has not gained 8 lbs over night and his face and belly have not swelled up.The last time he went up to 20mg pred, within 3 days all that I just mentioned happened.One night I carried him to bed the next morning I couldnt pick him up.It was so strange.Hopefully when I call the rheumy back Monday I can tell him Flash is back and we can begin tapering again.I hope all is having pain free days and not to difficult a time at school. has a parant meeting Mon. night ,school Tuesday,but the teacher is setting up individual meetings with parants and studant so I will be able to talk about and ways she can help him.It also helps that until Sept.3 they only go half days.That will help him gradually get used to all the walking.Love and hugs to all.

Becki and 4systemic

[Guest guest]

Hi Georgina,

I hope Josh has a great time at camp,I remember last year he overdid it,so hopefully this time he will take it easier,LOLL.He starts school the next day doesnt he?

is doing ok,I had hoped he would be 100%by today,hes a long way from being Flash,more like Hopalong Cassidy.I hope he has not become resistant to the pred.I said hi to s teacher this morning,Parant meeting tonight,and school next week.She is somewhat familiar with because the board said to bring a towel,and when I said he had JRA and needed a nap pad,she asked if this was .Turns out I wasted $9,the school provides them.I have my folder ready to give her a basic understanding of s disease,then all this week she is having one on one conferances before they start comming,which is a big relief.

still has plenty of swelling for the ortho,so hopefully this time around he will do it all.Everything swelled except the top of the ankle,which is what was injected the first time.Im hoping he will do behind the outside right ankle bone too.I had really hoped that the small effusion was just fat,but it swelled up big too.I cant wait for his Pogon Buggy to get hear,but mayby after Thursday it will be a long time before he needs it.Next time I am singing the blues I will give a holler,have to remember the time change though.You guys are 5hrs behind I think,and it changes when we turn our clocks back.My niece used to live in Hawaii and I never could keep it strait.Hope you have a wonderful week.How is Joshes taper going?I hope very well.It is so dissapointing to get so low,then something happens,and up they go.Hugs to you and the youngens.

Love

Becki and 4systemic

Re: update

Hi Becki,

I was so happy to hear that the recently increased pred seems to be helping Dave's symptoms pretty well without all of a sudden bringing on all of those negative side effects that we come to despise so much. Not too long now, until 's back to the doctor for his next ankle injection. You guys will be in our thoughts. I hope the procedure goes well and that his ankle inflammation is resolved this time around .... at least for some good length of time. That would be great.

I can hear the school bells ringing, too : ) Kayla begins on Friday, while Josh flies out to Oahu for the JRA Camp Weekend and then starts school on Monday. Tonight is the last night the children can stay up late. Have to get back on schedule : ) I was a little sad to read that is not able to have the teacher you were hoping for. Maybe next year? Maybe she will have spoken to his kindergarten teacher, too. Good luck at your upcoming parent/teacher meetings. It sounds like you're well prepared : )

Aloha,

Georgina

----- Original Message -----

From: Allan Larson

Hi all,Its only 9:30 so to early to tell how s day will go,but he woke up with no stiffness and said he feals much better.Its still kind of dark in the house,but I just peaked at his ankle and I think alot of the swelling is down.I was getting pretty nervous,because he has still been having alot of limping and pain and trouble sleeping.I dont know what we have done if the increase didnt help.This time around is differant, is not crying and begging for food,he has not gained 8 lbs over night and his face and belly have not swelled up.The last time he went up to 20mg pred, within 3 days all that I just mentioned happened.One night I carried him to bed the next morning I couldnt pick him up.It was so strange.Hopefully when I call the rheumy back Monday I can tell him Flash is back and we can begin tapering again.I hope all is having pain free days and not to difficult a time at school. has a parant meeting Mon. night ,school Tuesday,but the teacher is setting up individual meetings with parants and studant so I will be able to talk about and ways she can help him.It also helps that until Sept.3 they only go half days.That will help him gradually get used to all the walking.Love and hugs to all.

Becki and 4systemic

[Guest guest]

Becki:

I was glad to see your posting...I had been wondering how you were

doing.

I was the one whose' son was suspected to have interstitial lung

disease. His diffusion capacity was decreased on his last PFT. We did

go on to the pediatric pulmonologist. He didn't make much of the

decrease in diffusion capacity, he did change his inhalers around, to

Flovent and Foradil. The Foradil is working nicely for now.

The Flovent caused his cortisol level to drop to practically non-

existent. So he was switched back to Advair. We also found out he has

osteoporosis. His dexa scan showed his bones to be 60% of normal. We

saw a pediatric endocrinologist last week, and have some tests

outstanding, and he may be going on Alendronate and possibly even

growth hormone.

You were wonderful support during the time I was wondering about

ILD...thanks so much! Sorry to hear about the Remicade...hope that

the Kineret works well for you. take care, and again, so glad to hear

an update...

and Rob 13 jas

> Hi...

> I haven't written for some time and wondered how everyone's kiddos

were

> doing.My arthritis has been bad.I was on Remicaid but out of

knowhere

> developed a nasty reaction.With my lung disease its hard to tell if

it was

> just lung related or an infusion reaction or both.

> Anyways I am starting on that new drug Kineret...its an injection

> everyday.That along with my Imuran 75mg twice a day and Vioxx.

> Also a while back there was a lady wh's son might have lung

involvement from

> the JRA...I was wondering how the testing went....

> Well thats it for now....

> I just want to remind everyone that I have started Interstitial

Lung Kids for

> Children and Teens with Interstitial Lung diseases or any type or

Cause

> (Rheumatoid or Methotrexate induced)...We added pictures to the

group today

> of a young boy with Pulmonary Fibrosis...he's as cute as can

be.....goes to

> National Jewish.

> anyways if your child have lung involvement I encourage you to

join ! ! !

>

>

> Becki

> YOUR FAVORITE LilGooberGirl

> YOUNGLUNG EMAIL SUPPORT LIST

> www.topica.com/lists/younglung

> Pediatric Interstitial Lung Disease Society

> InterstitialLung_Kids/

[Guest guest]

Hi Becky,

Thanks for stopping by and giving us an update. I'm sorry to hear about your arthritis flaring again. And about the news that you had a bad reaction. Hopefully your new med will be beneficial and you'll start seeing some positive results soon. A couple people I know are taking Kineret. So far, so good. Maybe you've seen Jonny's progress reports here? Around the third week he had some increased joint pain but he felt that might be from overdoing things ... because he had been feeling so much better. He also mentioned that he continued to have an injection site reaction, mostly stinging. I don't know if it affects everyone like that or if it goes away in time, in those it does affect?

I wish you continued success with the Young Lung Support Group. And I hope that you're soon feeling much better : )

Aloha,

Georgina

----- Original Message -----

From: MissGooberGirl@...

Hi...I haven't written for some time and wondered how everyone's kiddos were doing.My arthritis has been bad.I was on Remicaid but out of knowhere developed a nasty reaction.With my lung disease its hard to tell if it was just lung related or an infusion reaction or both.Anyways I am starting on that new drug Kineret...its an injection everyday.That along with my Imuran 75mg twice a day and Vioxx.Also a while back there was a lady wh's son might have lung involvement from the JRA...I was wondering how the testing went....Well thats it for now....I just want to remind everyone that I have started Interstitial Lung Kids for Children and Teens with Interstitial Lung diseases or any type or Cause (Rheumatoid or Methotrexate induced)...We added pictures to the group today of a young boy with Pulmonary Fibrosis...he's as cute as can be.....goes to National Jewish.anyways if your child have lung involvement I encourage you to join ! ! !BeckiYOUR FAVORITE LilGooberGirlYOUNGLUNG EMAIL SUPPORT LISTwww.topica.com/lists/younglungPediatric Interstitial Lung Disease SocietyInterstitialLung_Kids/

[Guest guest]

Hi Theresa,

It was good to hear from you, again. I'm sorry about the troubles with . It seems like there have been some glitches that are affecting quite a few of our members. Fortunately, it seems to be a temporary thing that resolves itself sooner or later. (Hopefully sooner!)

I was really glad to hear that Rae is doing well. I was very worried when you mentioned that she had Mono, strep, and liver problems ... all at once. And then she was finishing up on the Vioxx study and being taken off all meds. I'm happy that things all worked out okay. When you said she's in remission but that she's still getting sick all the time, you meant totally unrelated to JRA symptoms, right? If so, yea!!! Thank you for sending an update. So, did you ever get a group going in your local area, for parents and kids with arthritis to get together? I remember that you were involved with a local fashion show that was very successful in raising funds for the AF. Are you still involved with that and, if so, are there any other upcoming events planned?

Take Care,

Georgina

----- Original Message -----

From: Theresa Kuhn

You may not remember me because for some reason I was unable to receive your emails and I was unable to send them. Then, all of a sudden, I started receiving your emails again.

Anyway, since we last wrote, was constantly getting sick, and still is... BUT, and we just found out on Wednesday, is in a remission!!! Hallelujah and all that! She is off all meds and oh, man we feel great! It really can happen, so keep the faith.

Theresa West Palm Beach, FL (, 5, Sytemic)

[Guest guest]

Theresa,

Hooray for !!!

Val

Rob's Mom (5,systemic)

In a message dated Fri, 04 Oct 2002 13:38:29 +0000, bubash797@...

writes:

> You may not remember me because for some reason I was unable to receive your

emails and I was unable to send them. Then, all of a sudden, I started

receiving your emails again.

> Anyway, since we last wrote, was constantly getting sick, and still

is... BUT, and we just found out on Wednesday, is in a remission!!!

Hallelujah and all that! She is off all meds and oh, man we feel great! It

really can happen, so keep the faith.

>

> Theresa West Palm Beach, FL (, 5, Sytemic)

>

>

>

> Send and receive Hotmail on your mobile device: Click Here

>

>

[Guest guest]

Nick baby:

OMG, what hell you are going through. But you've done great!!!!! Putting in a

call to the surgeon was brilliant, and I'm so sorry his ass***ociate was a

jerk! First things first. is right. (She's a genius, but shhhh. If she

hears me say this she'll never let me forget it lol). Take a moment, close

your eyes. and just relax. Take a few deep breaths. It will calm and center

you. Breathe. It's helped me (pain wise) more often than I can tell you over

the past 10 years--with the meds that is.)

Has the Surgeon or his nurse called back? Hopefully the answer is yes. If

not, you must call again. As frustrating as this must sound it's a must. It

will get better. As trite as this sounds, is right. It will get better

and it will get better sooner rather than later. I'm gonna shut up cuz

's a whole lot better at this than I am but I just wanted to emphasize

the " badgering the doctor by PHONING HIM TO DEATH " part. And to let you know

we all care about you so much. So eventhough it seems so hard, hang in there

buddy. We're all rooting for you.

xoxoxooxoxooxo

Robin

[Guest guest]

>The VA is unable to prescribe me topomax. >>

Hey Nick....I can prolly tell you WHY too! Geeze! I got my new Rx today,

and he upped me to 75mg, twice a day, so 180 pills for the month, for a

grand total of $277!!!!!!!!!!!! Oh, and hubby went to see our PCP and he

asked if I was *all fixed* up.....meaning was I off the Neurontin. Hubby

told him that yes I was & that I was on the Topamax....and this is what he

said.. " I really didn't want to put her on that because it makes people

stupid, well, you know, incoherent, when they are on it " . Anyone here

taking it *stupid* or incoherent???????

>Well here I am.

>Fortunately I can say I feel better taking the vicadin closer

>together. Well thanks for all your support.>>

Dammit Nick! I am so sorry! Sure sounds like Dr's to pass that buck

eh? Keep on their asses....and especially if your arm continues to be in

pain the way it is. You need to (if possible) keep all of this

documented....just in case you decide to pursue a suit. Sending you a

gentle hug!

Ask me about my new MSM lotion for aches/pains!

http://www.scentsappeal.net

[Guest guest]

>I think im stupid and incoherent because I am on topamax, lol. I was told

>you could have a " detached " feeling. I didn't experience that. I

>completed the semester of college and did pretty well for an old lady who

>hasnt been in school for 20 years, lol. >>

<G> Ha Ha Ha missy! I'm still mad at that guy! LOL Neither him OR his

nurse was concerned about me going completely off of the Neurontin! Had it

not been for you guys, hell, I might have had a seizure while making

candles or something!

Ask me about my new MSM lotion for aches/pains!

http://www.scentsappeal.net

[Guest guest]

Jan: So happy that both your husband and you are doing so much better. Yes, a good night's sleep also helps tremendously. I pray that all will be all up hill from here on.

Is there a name for the type of back surgery that your husband had? Just curious as I am going through something also with my back, but they say that I am not a candidate for an operation.

Love and prayers -

gina

[Guest guest]

Blessings to your mother and your family, sweetie.

Ella

> Hi,

>

> Haven't posted for about a week as we've been in the hospital!

Well,

> Mother was the patient, but I didn't leave her side as she has been

> there only one other time in her life. I believe that I qualify as

> now looking the worst from this ordeal, even though I certainly had

> it easy compared to her.

>

> Wow, what a difference one week can make. No changes yet in her

> thyroid medication, but I'm anxious to know if perhaps all the other

> problems could have possibly caused the thyroid levels to be off.

> This episode certainly showed how other meds caused her body to

> absorb/intensify some medications while countering others, and what

a

> life threatening mess we were in.

>

> The doctor I spoke about earlier, who didn't want to share lab

> results will not ever be troubled with seeing her again and that has

> been settled. You see, after speaking with his staff on Monday

about

> the medications he prescribed making her sick, he didn't just

replace

> the one antibiotic that was making her sick, but instead said to

> trash the $350 group and he called in an order for a new package at

> $270. I did not go get it, but later that day when she got worse

and

> I spoke to the new cardiologists staff members, they requested that

> to save her the 50-60 mile ride that an EKG be done and faxed from

> her regular doctor's office. Naturally, he was not helpful, so I

> rushed her off to the cardiologists office in record time. We were

> rushed right in withoutout waiting and she was hospitalized as soon

> as the EKG was done.

>

> It seems that between his not monitoring the levels of heart meds as

> frequently as he should have, plus the expensive ulcer meds he gave

> her made her sicker, then they also dehydrated her, causing the

> levels of digitalis in her system to intensify and slow her heart to

> 30 beats a minute. On top of everything, the dehydration had her

> seeing bugs and spiders on the doctor's walls and equipment, etc and

> she lost 12 pounds in only a few days, and now her blood sugar

levels

> are out of sight and she is needing insulin.

>

> It's been a rough road, initially with talk of surgery if they

> couldn't get the heart rate up right away. She's had blood tests

> every 2-3 hours, round the clock since Tuesday until this afternoon.

> Thank goodness she has improved at an amazing rate in the last 24

> hours and no surgery. BTW, she also will not need insulin either.

> We're home and the meds have been significantly changed and

> thankfully the cardiologist and the endocrinologist are staying in

> contact with each other.

>

> With all that has happened, there is concent for me to also change

> her regular doctor, and my DO is agreeable to undertake this. He is

> one who believes in the patient being fully informed and has

> absolutely no problem with the patient having copies of anything in

> their file and loves it when the patient brings written questions

> they want answers to, because it often reminds him he want to cover

> certain things, as well.

>

> We see the endocrinologist again in just over a week. I know it is

> going to take some time for everything to settle down, but her

> outlook, her appearance, her energy level is amazingly improved from

> even a few days ago. I don't know if the thyroid meds are playing a

> part yet or not, but I am eager to see the results of her next labs

> at the endo visit. Some of the questions I had have been answered,

> but certainly I'm confident that any new ones will be addressed and

I

> know that the endo doc has already been apprised on this weeks

ordeal

> by his friend, the cardiologist.

>

> There's so much for me to learn about thyroid conditions, so I'm

sure

> I'll be back with questions.

>

> Thanks,

>

> J.

[Guest guest]

Poor thyroid treatment leads to many complications. Armour would make a big

difference I think.

Gracia

> Hi,

>

> Haven't posted for about a week as we've been in the hospital! Well,

> Mother was the patient, but I didn't leave her side as she has been

> there only one other time in her life. I believe that I qualify as

> now looking the worst from this ordeal, even though I certainly had

> it easy compared to her.

>

>

[Guest guest]

Kenny -

It's good to see an update from you. I'm glad there

was no problem in the cervical area. One point for

you. With an MRI, the radiologist reading it provides

a written report and you should be able to get a copy

of that, it's just a written description of what's seen

on the films.

As a matter of fact, I just called my MRI place to ask

about getting copies of my MRI films. The cost is

$5 per film paid in advance and they will be mailed to

me. I consider that fair for the work and material

involved.

But, Kenny, I'm not a doctor, but I would swear

that something is amiss in your lumbar area due to

the difference in feeling on your legs in certain areas.

Is there a possibility of getting a lumbar MRI soon?

It might be worth it unless you think you are getting

better.

joe

[Guest guest]

Glad you're doing a little better and that your MRI shows nothing, tho it is

understandibly confusing. I also have mild scoliosis and was told as I got/get

older that it can worsen little by little and isn't helpful wiht the other back

problems. I agree wiht Joe in asking for another MRI, tho I know most insurance

companies won't let you have them done real close together. Your states maybe

have different rules or something on the MRI films, I'm surprised b/c I walked

out of the MRI appt this past Wed with the copies of my films and got my report

on THursday afternoon. Anyhow I hope things work out and you get some answers,

ask someone else to also read the MRI report, I've had 2 or 3 differnt doctors

read mine (including the radiologist), always good to have more than one set of

eyes look at them, people are human and make mistakes (tho not good if at our

expense-pain wise) and can miss something, they did in my case and thankfully my

surgeon saw it right away (second surgeon). Anyhow I hope it works out, let us

know

Connie

Re: Update

> Kenny -

>

> It's good to see an update from you. I'm glad there

> was no problem in the cervical area. One point for

> you. With an MRI, the radiologist reading it provides

> a written report and you should be able to get a copy

> of that, it's just a written description of what's seen

> on the films.

>

> As a matter of fact, I just called my MRI place to ask

> about getting copies of my MRI films. The cost is

> $5 per film paid in advance and they will be mailed to

> me. I consider that fair for the work and material

> involved.

>

> But, Kenny, I'm not a doctor, but I would swear

> that something is amiss in your lumbar area due to

> the difference in feeling on your legs in certain areas.

> Is there a possibility of getting a lumbar MRI soon?

> It might be worth it unless you think you are getting

> better.

>

> joe

>

>

>

>

[Guest guest]

Hi Kenny,

glad the scans were clear and your feeling a little better, take it easy and I`m

sure things will improve.

best wishes pete

shoegazer_1978 <shoegazer_1978@...> wrote:

For those of you who remember, this is Mr. hyperflexion stretching

injury. It's been about 6 weeks since my really stupid injury. My

cervical MRI results came back, but the only information I received

was " negative " . I'm assuming that means there are no disc problems,

but it doesn't really tell me a lot. I'm not sure if I should

request a copy from the lab that did the MRI (I tried to get a copy

the day of the MRI but was told that was impossible) or from my

physician. My doc's got me on Darvocet N-100 for pain and a muscle

relaxant at night for the muscle spasms. I've been trying to do my

own PT since insurance only covers it following surgery or hospital

confinement (same thing for a chiropractor). The body tingles seem

to have subsided but I'm still having leg paresthesia . . . I would

describe it as wearing a pair of really itchy/uncomfortable pants

that you can't take off. Also my upper legs (above the knee) and

seat area feel a bit numb when sitting down . . . it's not true

numbness (I still have feeling) but rather a feeling of diminished

sensation. The physician I'm seeing seems to think I'm fine, that my

body just needs more time to heal. All the radiographs that have

been taken appear normal (besides the mild scoliosis in the thoracic

spine and lack of lordotic curve in the cervical spine). He doesn't

suspect a herniated lumbar disc, and he doesn't think my injury

caused my spine to curve (although he thinks it's a possibility that

the muscle spasms are causing it to curve). I think I've finally

reached the point where I'm concentrating most of my energy on PT and

getting better instead of self-blame and self-loathing from the

injury. Money is tight right now (I'm in AmeriCorps so I only earn

minimum wage) so I'm worried about the mounting medical bills

(insurance only pays 80%, but it's better than nothing). I have a

referral to see an othopedic specialist, so I might do that soon.

Basically I'd like to know if this recent injury might have caused my

recently discovered mild scoliosis, and it would be nice to get a

more thorough exam from a specialist. As far as a neurologist goes,

I think I'll wait to see if the leg paresthesia subsides. I'm

already in a big enough financial hole.

Sorry the " update " was so long. I guess to sum everything up, I am

doing better now and I'm trying hard not to hate myself and trying to

focus on the present and future instead of the past. Thanks to all

who have provided encouragement and support. My heartfelt desire for

everyone on this list is a life filled with as much contentment and

as little pain as possible. Blessings to all of you.

-Kenny

[Guest guest]

Kenny,

That was a long read. I didn't read whether your doctor diagnosed what's

causing your chronic leg paresthesia, which can be attributed to many

pathologies including peripheral neuropathy. Also, if you're experiencing

leg problems, your lumbar region not cervical might be causing the problems.

Why did the physician order just a cervical MRI? I don't want to scare you,

but X-rays & MRI's don't show everything (like an hematoma). Perhaps it's

time for a 2nd opinion. I'm glad you're not beating yourself up over this

anymore. Things could be infinitely worse, my dear. If you're earning

minimum wage & all these tests cost mucho bucks, please look into Medicare.

Swallow your pride. Given that you work for Americorps, I'm sure you'll be

giving a lot back to your community for many years to come. :-)

sonia

[Guest guest]

-Donna,

Im so happy to read that things keep improving with your labs.

Remember to give yourself time to heal, it sounds like it was a

pretty scary and icky thing you went though.

Ill continue to remember you in my prayers, as I do all the good

folk on the list.

Hugs Helen and ( 5, systemic)

-- In , faces1999@a... wrote:

> Just a quick update for all. Today was yet another visit to the

lab and thank

> god things are still improving. My Hgb is up to 12.2 and my white

count is

> down to 9,200. This a long way from 4 weeks ago when I was 6. 2

and 20,000

> respectively. The docs are still concernded about my retic. count,

which is the

> developing , immature red cell developement which is moving at a

slower pace. For

> this reason I am remaining on 60 mgs of prednisone daily. I am

feeling better

> and any not so good stuff I am dealing comes primarily from the

prednisone

> dose. I still have peaks and valleys and deal with fatigue but

overall I am

> doing better and will continue to do so. again..thanks for all

your thoughts and

> prayers..they are workin :-)

> with warm thoughts and hugs.....Donna

[Guest guest]

Hi Donna,

Glad to hear things are stabalizing and they were able to reduce your pred dose to 50mg.Fingers are crossed that things continue to get better.

Love and Hugs

Becki and 4systemic

[Guest guest]

Welcome back! Great news on the reduction of

Pred. Glad you were able to make the conference and time at Ocean shore too! Hope you had a great time.. always in my prayes for continued good progress at your lab visits...

Returned hugs too...

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

Well its that time again....I am back from the AJAO (yes, I managed to sneak in the VA confeence, for those who did not know I was doing so). Those who know me well know I could not miss an AJAO! The conference was great and we also stole some time at the beach, which was not only nice but needed. We returned last night just so I could make my docs appointment this morning. The news is good and the hgb is stable. I am actualy being moved to 50mgs of prednisone which is a blessing when one considers all the not-so-good side effects I am having from this med. Currently my worst are stomach problems, depression and rollercoaster fatigue/anxiety. I will continue weekly visits with hopes the retic. count improves, this is the only concern for the docs right now but time is likely to improve this problem on its own. Let us all keep our fingers crossed. Til next time, hugs to u all...donna

[Guest guest]

Hi Teena,

Know that you and are in our thoughts. It's not easy being the parent

of a child with special health needs and concerns. Not easy being the kid,

either! 's a trooper, though. A very brave young man. He'll keep those

doctors on their toes ;-)

Tell him to hang in there. One day at a time.

Aloha,

Georgina

PS ... sorry to hear about your computer woes but I'm glad you've gotten

everything straightened out again.

Lynn Comer wrote:

Hello All:)

I know I haven't posted in awhile well my computer lost all my info everything

so I had to start fresh again so I just made up a new email address and screen

name! is still the same

he went in recently to see his ped's doc because his stomach is still giving

him the what for

along with the headaches,joint pain, nothing has changed as IF the ped's

doc thought he would be all well oh he went a few weeks ago to the peds doc

adn since that time has lost 5 1/2 pds. the ped's doc didn't seemed to concerned

but I sure am and at the same time he went to see his ped's doc the rhuemy

was in the building she comes once a month to Toledo. She asked to see us

once we were done we didn't even have a appt but she still took the time

to sit down and talk which I thought was very nice. The trip to Cinncinati

is still a go it's that we have to wait for the insurance to send me my referrals

before we can make any definate arrangements but, she thought I'd changed

my mind as I hadn't spopken to her in awhile nope,,,,just lose ends need

to be taken care of here first. 's ped's doc gave him a nother scrip

to the Vicoden 5mg,for pain a new drug out on the market for his headache

he only gave him 2 tabs its called Axara,and an anti-depressant for the night

as he has terrible. terrible insomnia he gave him the antidepressant so he

could get sleep he is asleep as I'm typing this. He's still on his Vioxx,

and his Prilosec the doc did up the doseage that was good as he really needed

that. Dr. Brunner was not to impressed with what the ped's doc gave him the

way of med's she agrees with me that he can't keep on the way he is and be

on such medications as the V's forever the ped's doc is treating the symptoms not what is actually wrong with him and we want an answer so does his rhuematologist.

She wants us to see a Dr. Hopkin a genetic doc in Cinncy and a doc whom is

there in the headache clinic they have a excellent headache clinic. She asked

if I would rather see a doc in Toledo whom is there whom deals with headaches

as well I politely declined because Im leery of Toledo docs. Im not saying

the docs in Cinncy are Gods it's just that I've had my share of docs in Toledo.

I'm babying a terrible terrible wrist at this point so sometime this summer

will have to maybe get something done about it.

I did let her know this the thought that his old rheumy mentioned a possibility

of Chron's but nothing was never done no testing because he left Abruptly!!!

so she got on the phone setting up a appt next Friday for to be seen

by the GI doc,,,,,,,,,,,,,,and said before we left that if there is anything

anything at all with med's just call her or anything that she maybe able

to help me with call........she did say if we don't find out what is wrong

with we will look for other avenues which made me feel good there has

to be a answer out there if it as simple as it being Chron's I hope not as

he is really sick but then we would have a NAME we would know what direction

to go and God would be with us.Here is telling all it is good to be back

and all of you and your jra kids are in my prayers

Take care does have a rheumy appt in September and she wants to repeat

labs on him he recently had a heavy metal screening and it all came back

negative as did his CAT scan.

Bye,

Teena,

14

[Guest guest]

Well, guys a lot has happened in the last week. I've talked with the coordinator at the Cleveland Clinic and she gave me the name of a man here in VA who was transplanted at Cleveland. He called me and we had a long conversation. My fears about the distance from the hospital were calmed after this conversation as he said it went smoothly and he would not consider having it done anywhere else.

I had my EGD and banding done on Friday. 7 bands placed. Won't go into detail but it was a long trying ordeal.

The bad news is the AIH had flared again and we are starting up with a higher dose of Prednisone. (20 mg's). I'm so bummed because it took so long to get down to 5 mg's and here we start the roller coaster ride again. This will also cause me to have to up the Glucophage as my blood sugars will get worse on the higher dose Prednisone. So here we go with more pills. I take so much that it's crazy. They also started a 5 day course of antibiotics after I received some IV after EGD. We waited until 4 o'clock and the Hepatologist hadn't come back to talk with us. I was hungry and tired and worn out. When the nurse came by an asked me if I needed anything I said yeah " A cheeseburger and chocolate shake." She laughed. I didn't. I told my family that was enough. I put my clothes on and left. I did have my cheeseburger and chocolate shake. Not a good thing for a diabetic to have but I just craved it and figured after the day I had I deserved it. Best damn shake I've ever had.

Sorry to ramble. The good news is they banded the varices and hopefully this will prevent and bleeds in the near future. I need to stop feeling sorry and get on with things. I'm just so tired of fighting the system. It doesn't seem right that we had to be there all day long. I was worn out. The secret is to get out of the hospital fast before they kill you.