Re: I'm new- Please help me- all advice welcome...

May 29, 2004

welcome to the group and I am sure many will respond to your

post. Autoimmune diseases are very hard to diagnose and alot of

doctors go by the test only. Just because your bloodwork doesnt show

a positive RA or lupus, does'nt mean you don't have it... posted

some great posts on just this. About 20 to 30% of people test

negative and do have it. they are seronegative. A good rheumy uses a

list of criteria for lupus and RA and the blood testing is there,

but if you fit into quite a few of the criteria, but not the

bloodwork they will usually give you a diagnose. Keep in ming that

the autoimmune diseases resemble and present so close alot of docs

are reluctant to give a diagnosis to quickly as they may have to

turn around and tell you later they were wrong. Some get diagnosed

right away. In my case it was 5 years, first they said fibromyalgia,

then alot of tests for MS came up positive, then lupus, and then

what it really was...scleroderma, and yes you do feel like you are

crazy and the docs tend to make you feel like it is all in your

mind....your docs referal to a rheumy is a good one as he or she is

suppose to be the specialist in this feild....it is not uncommon to

have to wait several months to see one.....while you are waiting,

you might start a journal and write down everything that is going on

day to day.....fatigue,joint pain,inflammation ect.....hope this

helps and I am sure you will recieve more advise..one of our

moderators....a has set a really comprehensive site and you may

find several answers to some of your questions.....good luck and

once again welcome......Kathi in OK

a's site

http://rheumatoid.arthritis.freehosting.net

> HI- I do not know if I have RA or not. My bloodwork came back

today

> and did not indicate positive for whatever it is they were

measuring

> so it did not say I had RA or lupus which is what the docs were

> looking for. I certainly did not want to hear I had these

> conditions but I swear I am losing my mind right now. I am 29yrs

> old, female, great shape, good health until recently. About 1.5

> years ago, during a normal health check up, I showed my doc that

one

> of my fingers was red and swollen. It did not hurt so it did not

> concern either of us. I have since had a couple other fingers

that

> swell but seem to resolve themselves w/o any big problems. Then I

> started running about a year ago (I used to run when I was younger

> too) and did great up until October of last year. I had major

knee

> pain. I went to a PT for sports med thinking it was running

> some stretches and said I should be fine in a week. WEll, I could

> not run due to pain for 2.5 months. Then I started to run again.

I

> did awesome. Built my mileage up over 5 months to 12miles and

felt

> great! Then one morning I woke up and my knee and hip hurt. That

> was 10 weeks ago, and now I not only can't run but I walk with a

> noticeable limp. It is now a dull, sometimes throbbing pain in my

> other knee and my hip and sometimes my ankles. I feel like an old

> lady! I cannot carry my son up the stairs due to pain. My doctor

> gave me Baltrex for inflammation and pain which helps but even w/

> the meds I still feel old. I am also terribly fatigued and

getting

> depressed. I was hoping the blood results would indicate

> SOMETHING! I honestly feel like this all might be in my head! My

> doc thinks I do have RA by symptomsand is recommending I see a

> rheumatologist but where I live it will be 3-4months to get an

> appointment. The doc said some people who have RA do not test

pos.

> on blood tests. Please tell me what you all think- I am desperate

> for help...

May 29, 2004

Hi , Welcome to the group, Tawny

> HI- I do not know if I have RA or not. My bloodwork came back

today

> and did not indicate positive for whatever it is they were

measuring

> so it did not say I had RA or lupus which is what the docs were

> looking for. I certainly did not want to hear I had these

> conditions but I swear I am losing my mind right now. I am 29yrs

> old, female, great shape, good health until recently. About 1.5

> years ago, during a normal health check up, I showed my doc that

one

> of my fingers was red and swollen. It did not hurt so it did not

> concern either of us. I have since had a couple other fingers that

> swell but seem to resolve themselves w/o any big problems. Then I

> started running about a year ago (I used to run when I was younger

> too) and did great up until October of last year. I had major knee

> pain. I went to a PT for sports med thinking it was running

> some stretches and said I should be fine in a week. WEll, I could

> not run due to pain for 2.5 months. Then I started to run again.

I

> did awesome. Built my mileage up over 5 months to 12miles and felt

> great! Then one morning I woke up and my knee and hip hurt. That

> was 10 weeks ago, and now I not only can't run but I walk with a

> noticeable limp. It is now a dull, sometimes throbbing pain in my

> other knee and my hip and sometimes my ankles. I feel like an old

> lady! I cannot carry my son up the stairs due to pain. My doctor

> gave me Baltrex for inflammation and pain which helps but even w/

> the meds I still feel old. I am also terribly fatigued and getting

> depressed. I was hoping the blood results would indicate

> SOMETHING! I honestly feel like this all might be in my head! My

> doc thinks I do have RA by symptomsand is recommending I see a

> rheumatologist but where I live it will be 3-4months to get an

> appointment. The doc said some people who have RA do not test pos.

> on blood tests. Please tell me what you all think- I am desperate

> for help...

May 29, 2004

(and especially other " new " members),

Much of what you are concerned about and asked about, is common to so

many going through diagnostics for RA and other diseases involving

the joints. As you will hear from many, Rheumatoid Factor (RF) is one

test often given and too often given too much weight in diagnosing

RA. Among other tests, most doctors also order a " Sed rate "

and " CRP " . In my very unprofessional opinion they prove more than

the " RF " , as they indicate the presence of inflammation. But they,

too, are far from being able to give a definitive diagnosis.

Many doctors/researchers feel RA tends to be less aggressive in

patients with sero-negative RA (negative RF). However, " generally "

doctors tend to define " aggressiveness " in terms of joint

destruction. I think you also need to keep in mind that while the

joints are what is typically and most often affected in RA, RA can

and, more often than we'd like, does affect any organ in the body and

can even be fatal.

I am one who is sero-negative and fortunate not to have a lot of

massive joint destruction. Yet I have RA in my lungs, have been

recommended for a lung transplant because of it, yet also

was " rejected " by the transplant center in part because my RA is not

considered to be under control (still an active disease process

leading to the destruction of my lungs). To be clear, RA was not the

only factor leading to my rejection but was one of the primary

reasons.

Regardless of where RA seems to be causing the most " trouble " or how

severe it seems to be, it is very important to seek treatment right

away. It is also important to remember that just as RA can be unique

to each person in how it affects them, the treatments and their

effectiveness are different for everyone. What works for one person

can be totally useless in treating lots of others. What really

matters is what works for you.

It is very common to tend to think there is a preferred order to try

various treatments. I blame that on insurance companies who often

will not authorize the more expensive treatments unless a certain

number of cheaper alternatives have already proven ineffective.

Sometimes patients are also lured into thinking newer means better,

as are some physicians.

I am always very excited to hear about new medications and treatments

for RA patients because this is such a deadly and destructive

illness ---- and because so many patients either have a difficult

time finding a treatment that works for them or who no longer respond

to a treatment that has been succesful in the past.

But, on the other hand, I feel strongly that doctors need to remember

that many of the " older " medications are very good treatment options

for a lot of people. Patients also need to know about, accept, and be

willing to try those " older " medications/treatments if their RD's

suggest giving them a try and if the treatment plan sounds

reasonable. I think a good doctor will have good reason for whatever

treatment plan he/she recommends. Of course there are sometimes also

very valid reasons and indications to justify proceeding directly to

a newer treatment option without going through the trial of numerous

less expensive options.

Many RA patients are not good candidates, for a multitude of reasons,

for the various " newer " treatment options. I am one that fits into

that category. I am also very grateful to have a fantastic RD who is

on top of the latest treatments, participates in clinical trials, yet

who also continues to prescribe many of the older, more " traditional "

treatments that have fallen out of favor with many doctors --- when

he feels that is the best option for the patient. I, personally, feel

it extremely important for RD's to keep a good balance to make sure

he/she is always up-to-date on all treatment options.......new and

old.

Bottom line when it comes to choosing a treatment if for the doctor

to know the patient well, know their medical history well, know about

their drug sensitivities and drug allergies ---- and ---- to be well

educated in all treatment options..........only then can they make

the best choice in recommending a treatment plan. Then they need to

keep an open mind as to how to proceed from there.........know when

to be patient, know when to make a change, know when to add and

subtract from the treatment plan. The doctor and patient need to

communicate well in order to find the best treatment in the fastest

time possible.

When new to RA, or the possibility that you have RA, I feel strongly

that you need to have a doctor you are comfortable with and that you

feel is well versed in both the disease and its treatment options.

While generally you need a RD to at least be the overall manager of

your care, there are pcp's who are very well qualified to at least

manage your day-to-day, regular care. It is unfair to say you must

absolutely have a RD to provide all of your RA care or to do all of

your RD diagnostics. Only you can decide who is best for you. If you

educate yourself

Don't be afraid to ask for and seek as many opinions as you feel

necessary. I am fortunate that my doctors have been the ones to first

think it a good idea to seek additional opinions. I consider my

doctors to be the best in our area, and rate them very high. Yet,

partially due to my " abnormal " presentations from the beginning on

through finding a viable treatment option, my doctors have referred

me to some of the best medical teams in Utah and Southern California.

I owe my life as well as my comfort to all of these doctors working

together.

Yes, it can be very difficult in terms of time and expense to travel

for expert consults. But it also can be well worth it. But, just

because you travel a distance for a consult doesn't mean you have to

go there for your regular care. Doctors in terciary care centers are

very used to working with physicians in other areas. A good RD, or

even a pcp if that is the best physician available to care for you

and your RA, will welcome the participation and direction (as

necessary) of your " distant " RA expert.

Sorry to have rambled and been so wordy and long. Just as a word of

explanation for the many that don't know me, mainly for health

reasons I'm not able to write often and thus when I do write I often

get " lengthy " , trying to get as much said as I can because I don't

know when I might be able to write again.

I just hope that something I've said will be helpful to someone. I

know all too well how long, lonesome and frustrating the path of RA

or any chronic illness can be.

Sorry, but I really need to add one last train of thought ----

although last to be mentioned, I consider it to be one of the most

important things that is relevant to ALL patients. It is imperative

that pain be managed. To share if I may, when in the midst of a very

severe medical crisis and also in excruciating, unrelenting and

uncontrollable pain a very wise physician told me that until they

could first begin to control my pain their efforts at rehabilitating

my leg and lower body would be useless. When it is pain that prevents

you from using a limb or joint or whatever, no amount of therapy will

help you to use it again.

With RA, treatment of the disease is imperative. But treatment of the

pain is also essential. No, the average RA patient doesn't fit the

same category as what I just shared ------ mine was a case of

extremes. But what is important to learn from what I shared is that

pain can be dehabilitating. Pain can lead to complete loss of use of

a limb or joint. Exercise is important. However, if the pain gets out

of control you won't be able to exercise.

Guess the bottom line is that every aspect of your illness needs to

be addressed and to be adequately treated.

Again, my apologies for rambling on and on. I'm very sorry if I've

bored all of you to tears.

Best wishes to all of you, old and new. Welcome to all of the new

members. If any of you have something you think I might be able to

help with, or if you have questions you'd like to ask, I do ask you

write not only to this " list " but also to me personally because I do

have a lot of " down " times when I can't keep up with the group but do

try extra hard to answer individual emails. I'm on digest format with

the group and sad to say but a lot of the time I end up weeks and

sometimes even months behind with my digest mail.

My personal email is:

demarn@...

Elaine in Vegas