Re: Question from a newcomer

[Guest guest]

Stefanie, welcome to the group!

Is your physician a rheumatologist? What medications are you currently

taking?

It sounds as if you need a second opinion. We have several members who

live in Florida who may be able to recommend a rheumatologist to you.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Question from a newcomer

> Hello i am unable to sleep well and fighting with my doctor of this

> any help from you all would be great. I have RA newly dx. The

> problem I am having is that my dr is not wanting to treat me

> aggresively. I have a high level RF and multiple joints with damage

> from the typical hands feet and knees to the most painful in my neck

> with the vertbra deteriating I am sooooooo frustrated that I can not

> seem to get her on the same page with me. I have been hurting for 2

> years now and it just gets worse. I can hardly move in the mornings

> or even if i sit for a moment to rest from things I can not clean

> or play with my kids Any advice for me I guess I am looking to talk

> with others who can understand whati am dealing with.

> thankyou for listening

> Stefanie

> Sleepless in Florida

[Guest guest]

, I know exactly how you feel. On top of RA, keeping up

with the house and 2 young boys, I have to work full-time to help

pay the bills. My husband works full-time, too. Its hard for him

to understand why I can't do it all.

Where in Florida do you live? We might be moving to Tallahasse at

the end of the year.

Sheri

> Hello i am unable to sleep well and fighting with my doctor of

this

> any help from you all would be great. I have RA newly dx. The

> problem I am having is that my dr is not wanting to treat me

> aggresively. I have a high level RF and multiple joints with

damage

> from the typical hands feet and knees to the most painful in my

neck

> with the vertbra deteriating I am sooooooo frustrated that I can

not

> seem to get her on the same page with me. I have been hurting for

2

> years now and it just gets worse. I can hardly move in the

mornings

> or even if i sit for a moment to rest from things I can not clean

> or play with my kids Any advice for me I guess I am looking to

talk

> with others who can understand whati am dealing with.

> thankyou for listening

> Stefanie

> Sleepless in Florida

[Guest guest]

hi sherri im in pensacola and fighting with my military dr for treatment i have

so many question do you message at all for dirtect talking verus email

mine is b7cow1972

Sheri <sheri02cats@...> wrote:

, I know exactly how you feel. On top of RA, keeping up

with the house and 2 young boys, I have to work full-time to help

pay the bills. My husband works full-time, too. Its hard for him

to understand why I can't do it all.

Where in Florida do you live? We might be moving to Tallahasse at

the end of the year.

Sheri

> Hello i am unable to sleep well and fighting with my doctor of

this

> any help from you all would be great. I have RA newly dx. The

> problem I am having is that my dr is not wanting to treat me

> aggresively. I have a high level RF and multiple joints with

damage

> from the typical hands feet and knees to the most painful in my

neck

> with the vertbra deteriating I am sooooooo frustrated that I can

not

> seem to get her on the same page with me. I have been hurting for

2

> years now and it just gets worse. I can hardly move in the

mornings

> or even if i sit for a moment to rest from things I can not clean

> or play with my kids Any advice for me I guess I am looking to

talk

> with others who can understand whati am dealing with.

> thankyou for listening

> Stefanie

> Sleepless in Florida

[Guest guest]

Hi , my name is and I have the same problem with my

neck that you have and I used to have the same problem with the

doctor. My hands are swollen 24/7 and my old doc. used to tell

me " I only see fat, you are just too fat " so I changed docs until I

found one that listened, he referred me to an ortho, this guy didn't

want to treat me, so he referred me to a rheumy and it turned out to

be the best thing for me. I am very happy with my rheumy. Maybe

you should change docs until you find the one that suits you best.

I will be praying that you find your way to a better doctor.

~ROSA~

-- In , " Stefanie " <b7cow1972@y...> wrote:

> Hello i am unable to sleep well and fighting with my doctor of

this

> any help from you all would be great. I have RA newly dx. The

> problem I am having is that my dr is not wanting to treat me

> aggresively. I have a high level RF and multiple joints with

damage

> from the typical hands feet and knees to the most painful in my

neck

> with the vertbra deteriating I am sooooooo frustrated that I can

not

> seem to get her on the same page with me. I have been hurting for

2

> years now and it just gets worse. I can hardly move in the

mornings

> or even if i sit for a moment to rest from things I can not clean

> or play with my kids Any advice for me I guess I am looking to

talk

> with others who can understand whati am dealing with.

> thankyou for listening

> Stefanie

> Sleepless in Florida

[Guest guest]

Dear Sleepless in Florida,

I was diagnosed with cervical spondylitis over 30 years ago. I now have

lots more diagnoses to go along with it, but my neck continues to be a problem.

You need a doctor that you have a high level of confidence in. It could be

a rheumatologist or a neurologist.

But what helped me the most was asking my doctor to give me a script for

physical therapy. When looking for a physical therapist, don't just pick one,

but call and interview them. Find out what type of equipment they have, what

their philosophy is, and what type of degrees and experience they and the people

who work with them have. You should also be able to tell if there's one you

seem to have good feelings about.

Then go!

I still do the exercises they gave me 30 years ago. You can't imagine how

much it can help until you try. Plus hot packs, massage, and other techniques

feel soo good!

Every time I get a new diagnosis, I ask for a script to see a PT. I now

have enough PT exercises to do every day that I no longer feel the need to do

other types of excercise!

Another tip: try buying one of those things that looks like a tube sock

that's filled with hulls. Heat it in the microwave, and put it around your

neck. Heaven!!! If cold works better for you, throw it in the freezer.

One more tip: when doing PT exercises at home, you might want to do them to

music which you have turned up loud enough to drown out the sounds of crunching

in your neck!

Hope these help.

Dix

-- In , " Stefanie " <b7cow1972@y...> wrote:

Hello i am unable to sleep well and fighting with my doctor of

this any help from you all would be great. I have RA newly dx. The problem I

am having is that my dr is not wanting to treat me

aggresively. I have a high level RF and multiple joints with

damage from the typical hands feet and knees to the most painful in my neck

with the vertbra deteriating I am sooooooo frustrated that I can not seem to

get her on the same page with me. I have been hurting for 2 years now and it

just gets worse. I can hardly move in the mornings or even if i sit for a

moment to rest from things I can not clean or play with my kids Any advice for

me I guess I am looking to talk with others who can understand whati am dealing

with.

thankyou for listening

Stefanie

Sleepless in Florida

[Guest guest]

Dana...

I had surgery a month ago for stenosis at five levels (L1-L5). It

had gotten to the point that I simply couldn't avoid it. As I

understand, the pain from degenerative problems can sometimes be

relieved, maybe even entirely, through moderate aerobic exercise or

(even according to some specialists) with yet more rigorous

exercise, but this does not necessarily apply to stenosis,

particularly when, as in your case, nerve compression is involved.

The longer surgery for stenosis is postponed, the greater the

suffering and the greater the potential for complete loss of control

of one or both legs, as well as for loss of control of bowel and

bladder. Lynda, who has posted here, had endoscopic surgery at a

clinic in Salt Lake City. She strongly advises that anyone

contemplating surgery, whether it's endoscopic (minimally invasive

spine surgery) or not, demand that the physician provide complete

information on pain (both immediately post-op and long term), pain

medications, chances of complete recovery, etc. PRIOR TO SURGERY.

Right after surgery I had lost control of my right leg, but it's

returning. Pain after surgery was intense, but has moderated. The

worst thing for me is that it's like being on a roller coaster - one

day fine, the next day pain and numbness. You want a skilled surgeon

who understands and practices rigorous pain control, and one who

will absolutely level with you. If you can, contact one or more of

his recent patients. I hope this helps. Russ

> Hi All:

> I've had about 20 years intermittent back problems. At this time,

after 1.5

> years physical therapy and 3 epidurals over that time, about four

weeks ago my

> left leg and especially the foot went numb and tingly with some

foot weakness

> on testing. Three surgeons want to do stenosis surgery. By the

way, I have

> almost no pain during this last four weeks but it's hard to walk

due to the

> numbness. I am very frightened of surgery and would like to hear

other people's

> positive surgical experiences, ways they avoided surgery, any

cures for the

> numbness, anything you'd like to share.

>

> Emotionally, I have been very disabled the last four months. I

have a door to

> door carpool to work and just sit at my job and then come home and

watch TV

> at night, have given up most other activities, groceries being

delivered, feel

> very helpless, you know what I mean. Would appreciate any

suggestions. Great

> to meet you all!!!!!!!!!!

> Dana

[Guest guest]

Dana...

I suggest that you click on the URL below and read the New Yorker

article written by Dr. Jerome Groopman in its entirety. It has more to

do with degenerative spine than with stenosis, but it ought to be

helpful and informative just the same. The article appears on an

outdated web page for Dr. C. Chiu's California Spine Center. If

you live anywhere near Ventura or Thousand Oaks, California, you might

want to talk to folks at Dr. Chiu's spine center. Wherever you are, a

call to that center might be useful. There are, unfortunately, quacks

in every field of medicine, but that is particularly true in the field

of spine surgery - a field that, for the most part, is still in the

dark ages. Be damned sure that your physician isn't one of those

quacks, and don't allow him to do anything more than what you agree

to. Russ

http://www.spinecenter.com/non-fusion.asp

[Guest guest]

MESSAGE # 1589 DELETED

HELLO mscinbd,

I deleted your original post to the group because you discussed the pain meds that you take by name.Notice that I have left a copy of your post, minus the name of the particular medicine that you have been taking. This was done to conform to the wishes of the group founder.

Please do not name your pain meds in future posts in the group setting . All other meds are ok to discuss openly,just not the names of the particular pain medicnies that you may be taking.

Your cooperation in this will be greatly appreciated.

MAY YOU HAVE A BETTER DAY TO DAY THAN YESTERDAY AND NOT AS GOOD A DAY AS TOMORROW.

TAKE AS BEST CARE AS YOU CAN AND BE SAFE

LARRY,group moderator

inngaa@... wrote:

I have stenosis L4-5 and have been told by three surgeons that I needed surgery. However, I went to a neuro surgeon who is considered one of the best in the DC area (voted by 2000 doctors) and was told to exercise as much as possible to head off the surgery. It was the best advice I could have received. I am doing 150% better. I am able to work out two hours a day (walking, dancing, stepping and weights). I often have to take a half a [pain med name deleted by group moderator ] before working out. But I no longer need a cane. I rarely limp. It is like magic.

I advise anyone with stenosis to try exercise first. Incidentally, I did have two epidural injections which helped the pinched nerve. But do consider it. I was so close to surgery.

I may have to get surgery in the future, but it is going to be a long time before I have to.REMEMBER ALL OF OUR MEN AND

WOMEN IN THE ARMED SERVICE OF OUR NATION

PRAY THAT THEY MAY BE SAFE

AND SOUND IN BODY AND MIND