Re: Newly diagnosed; new member

[Guest guest]

Tests are funny things. Some give false negatives and sometimes false positives.

My daughter has been tested for lupus off and on for the past almost 20 years.

Here are the results of her tests:

Positive

Negative

Positive

Negative

Negative

Now they say she has Fibromyalgia.

I supposed that is why it is called the Practice of Medicine.

Hopefully, they will get it right soon.

Sorry if I sound cynical today, but I had a lot of trouble staying asleep last night and now it is only 10 AM and I want a nap!

Hugs,

Jacy

~Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.

-----Original Message-----From: britlit1964 [mailto:britlit1964@...]Sent: Sunday, May 23, 2004 16:14Rheumatoid Arthritis Subject: Newly diagnosed; new memberHi everyone!My name is -Anne and I was diagnosed with RA, fibromyalgia and now maybe Lupus. The last few weeks have been a whirlwind and my head is spinning from all of the tests, info and changes. Does it ever calm down?The thing that has me so confused is that I've had bloodwork done several times in the past month and EVERYTHING changes each time! I had a negative RF; now it's positive. Negative for Lupus; now something's positive. C-reactive Protein was mega-high two weeks ago and now it's normal. White blood cell count was low three weeks ago and now it's normal.How will I ever truly know if I have Lupus? It's clear that I have RA since I've had every symptom, including the nodules, and now it's showing up in the RF. But with all of these changes in the other things, I don't know what to think in regard to Lupus.The doc started me on methotrexate this past Friday; I've been taking Plaquenil and Celebrex, plus folic acid and other supplements, for two weeks. They said they're going to be keeping a close eye on the Lupus possibility and that Plaquenil and metho are used for Lupus, too, so I'm covered.Any insight, suggestions or questions I should be asking?I'm looking forward to getting to know all of you!-Anne

[Guest guest]

Oh, please don't apologise, Jacy! I know all about the sleeping

thing -- or lack thereof! Our delightful principal decided to call a

faculty meeting before school today, meaning we had to be there at

6:45 a.m. and I have a half-hour commute! The meeting lasted 10

minutes and covered nothing important! Grrrrrrr.

I hope they'll give me a rest from the labwork soon. I've had

different tests run every week for a month. But, the PA told me

they're going to be investigating the Lupus more closely, so I guess

I'll be rolling up my sleeves often for the near future.

-Anne

--- In Rheumatoid Arthritis , " Jacy " <jacymail@c...>

wrote:

> Tests are funny things. Some give false negatives and sometimes

false

> positives.

> My daughter has been tested for lupus off and on for the past

almost 20

> years.

> Here are the results of her tests:

> Positive

> Negative

> Positive

> Negative

> Negative

> Now they say she has Fibromyalgia.

> I supposed that is why it is called the Practice of Medicine.

> Hopefully, they will get it right soon.

> Sorry if I sound cynical today, but I had a lot of trouble staying

asleep

> last night and now it is only 10 AM and I want a nap!

[Guest guest]

Hi ,

It's good to meet you! I've been to the Lupus website and have 5 of

the 11 indicators. I don't know which Lupus test came back positive --

I'll see my doctor next week -- but it wasn't the ANA. My C-RP has

been quite high in the past, but was OK in the last round of tests.

I've been having a difficult time figuring out which symptoms/issues

are coming from which disease. Maybe it doesn't matter, really, but

it's all so confusing.

I have really bad muscle spasms in my legs, twitching in my feet,

lots of joint pain and swelling in my ankles and hands. Sometimes my

knees just buckle and won't support me. I have some tingling in my

fingers and toes and they're really sensitive to cold. Plus, I have a

rash that comes and goes on my cheeks -- large bumps that won't go

away until they're good and ready to leave, no matter what I try.

Any tips or advice you could give would be most appreciated. I'm

taking Plaquenil twice per day, plus Celebrex once per day, Foltx,

and Tramadol for pain. I also just started weekly methotrexate

injections.

-Anne

> Dear Ann, I have Lupus, RA and fibromyalsia too. Those blood

tests will always vary because of the medications you're taking. The

Lupus Foundation is a wonderful place to go for information and

they're great people to deal with. Try www.lupusfoundation.com to

see if that's where I found it. If not, look under health and

look for Lupus. Anymore I can help you with, please write me.

You're the only one so far that I can think of that has all of the

conditions that I have.~

>

[Guest guest]

Lately a good sleep is the exception rather than the norm.

And I only have a mild case of RA going.

Hugs,

Jacy

~Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.

-----Original Message-----From: britlit1964 [mailto:britlit1964@...]Sent: Monday, May 24, 2004 19:33Rheumatoid Arthritis Subject: Re: Newly diagnosed; new memberOh, please don't apologise, Jacy! I know all about the sleeping thing -- or lack thereof! Our delightful principal decided to call a faculty meeting before school today, meaning we had to be there at 6:45 a.m. and I have a half-hour commute! The meeting lasted 10 minutes and covered nothing important! Grrrrrrr.I hope they'll give me a rest from the labwork soon. I've had different tests run every week for a month. But, the PA told me they're going to be investigating the Lupus more closely, so I guess I'll be rolling up my sleeves often for the near future.-Anne> Tests are funny things. Some give false negatives and sometimes false> positives.> My daughter has been tested for lupus off and on for the past almost 20> years.> Here are the results of her tests:> Positive> Negative> Positive> Negative> Negative> Now they say she has Fibromyalgia.> I supposed that is why it is called the Practice of Medicine.> Hopefully, they will get it right soon.> Sorry if I sound cynical today, but I had a lot of trouble staying asleep> last night and now it is only 10 AM and I want a nap!