Another newbie... with a couple of questions

[Guest guest]

Hello all. First I would like to thank everyone for the very

informative and helpful links provided in previous messages. They

really helped me understand some of the symptoms I have been

experiencing.

Here's my diagnosis background - About eight months ago I started

feeling flu-like, fatigued, swollen lymph nodes, joint pain and

having unusual blood test results. My doctor thought I was having a

re-occurance of malignant lymphoma, which I had in a localized area

in 2001. Long story short I had to go back to my oncologist and have

lots and lots of tests for several months until the end of December.

The good news is, I don't have to go back to the oncologist for six

months because she believes that the lymphoma isn't reoccuring and

that I have an autoimmune disorder. I continued to feel worse, now

have anemia and continuously high CRP levels and was sent to a

Rheumatologist in Oct.

Here is the question: I have seen the rhuemy 3 times since Oct., 6

weeks apart. When I first went to the rhuemy he stated he thought I

had either RA or Lupus. He set me up on NSAID's and Pain Medication

and prescribed a immune system blocker. I have had 3 sets of

blood work, and they have all came out the same plus an increase in

my CRP (inflammatory level in blood). My clinical visits

have been the same - ever increasing swelling joints, pain, fatigue,

etc. This doctor is very difficult to get information from. Is

there a time frame that I should anticipate an " official diagnosis " ?

I've read about how difficult diagnosing RA can be, however, I have

also read that early treatment can be the key to fighting damaging

effects. I had to stop working in Dec. and spend many days in bed.

(which I feel very guilty about with a 5-year old and husband- not

being able to do hardly any of the physical activities people

typically do).

Sorry for such a long email... however I wanted to make sure to set

the context. By the way everyone keeps congratulating me on the

cancer front and tells me how lucky I am it is " only " RA or Lupus. I

am very, very, very thankful it isn't cancer again and that they

care, but " lucky to have RA or Lupus " - Just a little vent there -

how do you all respond to people who minimize what you are living

with because it's " only arthritis " ?

Thank you!

Ronny

[Guest guest]

Ronny,

Welcome to the group!

You describe a very difficult but not an unusual situation - not being

able to get an immediate diagnosis.

Since there are so many different diseases and conditions that have

similar symptoms and the labs are often of minimal use, especially in

the beginning, it can sometimes take a very long time before the correct

diagnosis can be made. My philosophy is that it is better to wait for

the correct diagnosis than hastily be assigned an incorrect one.

Receiving the proper treatment and monitoring depends on an accurate

diagnosis.

And, yes, that's the terrible catch-22 - ideally, treatment should begin

promptly.

Usually, your rheumatologist will try to narrow the field of

possibilities so that you can receive treatment that would be

appropriate and safe for the most likely diagnoses. What specifically

have you been given so far?

Hard as it is to wait and wonder, I think it's a good sign that your

rheumatologist isn't jumping to any conclusions.

I fully understand your frustration with people around you referring to

diseases such as lupus and rheumatoid arthritis as " only arthritis " and

so much better to have than cancer. I actually had a physician tell me

the same thing early on in my own saga. Did she ever wonder why I didn't

return to see her again?

It is wonderful that you are a cancer survivor and that it hasn't

recurred, but the possibility that you have RA or lupus is no cause for

celebration. Some people will never get it. I'm afraid I'm just

extremely cynical on that point. I've given up on trying to educate

and Jane Q. Public and Uncle Bob and Aunt on the matter, but

concentrate instead on making sure that thoughtless comments don't get

to me as they once did. Just let them pass you buy. Realize that most

people aren't trying to hurt you with what they say, they just don't

understand the nature of immune system disorders like RA and lupus.

[ ] Another newbie... with a couple of questions

> Hello all. First I would like to thank everyone for the very

> informative and helpful links provided in previous messages. They

> really helped me understand some of the symptoms I have been

> experiencing.

>

> Here's my diagnosis background - About eight months ago I started

> feeling flu-like, fatigued, swollen lymph nodes, joint pain and

> having unusual blood test results. My doctor thought I was having a

> re-occurance of malignant lymphoma, which I had in a localized area

> in 2001. Long story short I had to go back to my oncologist and have

> lots and lots of tests for several months until the end of December.

> The good news is, I don't have to go back to the oncologist for six

> months because she believes that the lymphoma isn't reoccuring and

> that I have an autoimmune disorder. I continued to feel worse, now

> have anemia and continuously high CRP levels and was sent to a

> Rheumatologist in Oct.

>

> Here is the question: I have seen the rhuemy 3 times since Oct., 6

> weeks apart. When I first went to the rhuemy he stated he thought I

> had either RA or Lupus. He set me up on NSAID's and Pain Medication

> and prescribed a immune system blocker. I have had 3 sets of

> blood work, and they have all came out the same plus an increase in

> my CRP (inflammatory level in blood). My clinical visits

> have been the same - ever increasing swelling joints, pain, fatigue,

> etc. This doctor is very difficult to get information from. Is

> there a time frame that I should anticipate an " official diagnosis " ?

>

> I've read about how difficult diagnosing RA can be, however, I have

> also read that early treatment can be the key to fighting damaging

> effects. I had to stop working in Dec. and spend many days in bed.

> (which I feel very guilty about with a 5-year old and husband- not

> being able to do hardly any of the physical activities people

> typically do).

>

>

> Sorry for such a long email... however I wanted to make sure to set

> the context. By the way everyone keeps congratulating me on the

> cancer front and tells me how lucky I am it is " only " RA or Lupus. I

> am very, very, very thankful it isn't cancer again and that they

> care, but " lucky to have RA or Lupus " - Just a little vent there -

> how do you all respond to people who minimize what you are living

> with because it's " only arthritis " ?

>

> Thank you!

> Ronny