Help!! I'm so confused!!!
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| Thu, 07-28-2005 - 10:02pm |
My rhuematologist says he thinks I have RA. I had A positive ANA 1/320 but a negative RF. Also sed rate was high. He said he is running a bunch of tests to rule out lupus - I have had problems for years - latest being swollen wrists. I have had problems from bad feet to being hospitalized 3 years ago with SEVERE leg cramps - was on prednisone a year gained a lot of weight - slowly losing. I had my left knee replaced last Oct. and my right is bad - then this!!!! I'm sick of trying to figure out whats wrong-feeling like crud - and having no one to talk to who understands!!! I know many of you will I need new friends to talk to. Help!! Got any advise? I cant work and I have a husband and 2 sons ( 10 and 19 ) and am sick of not being able to do things and them not understanding..and feeling like a burden.
Please send advise. Anyone know about methtrexate??? He may start me on that.
Thanks for any advise.
Julie

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Julie,
Welcome to the board. I do know that there are many different forms of arthritis out there, and just because your RF factor came back negative is not a true indication of RA. Some of us here have a positive RF and some of us have a neg.
Molly our cl will undoubtedly provide some needed links and advice for you, she is a wealth of information.
I think all or most of us have or are currently on Methotrexate along with other DMARDS and NSAIDS. I have been on MTX for most of the last 7 or so years off and on. I have had no side effects and it is a common first defense most rhuemy's use. I also take enbrel and an anti-inflammitory (nsaid).
Do the research, work with your rhuemy to discover what you have exactly. Knowledge is power and we have to be advocates for our own health.
Good Luck
Holly
Welcome to this board, Julie. I have a couple of questions. What was the cause of needing knee replacement? Was it osteoarthritis or rheumatoid arthritis? Have you been going to a Rheumatologist for some time? Even if your RF is negative, you can still have RA. My first medication along this journey was methotrexate, also called metho, MTX). They start you on a low dose and have you get blood tests. It can cause some side effects, but usually when you stop it, they go away. Hair loss is one side effect. You will not go bald, your hair thins a tiny bit. IF this is indeed RA, you need to fight it aggressively, before there is more damage.
This board has wonderful ladies and gentlemen on it. There is much knowledge here, but we are not doctors. We offer advice, hope, and understanding. We know what you are going through. This is the place to vent your frustrations. I am sending you some ((((gentle hugs)))). Let us know what your tests show. I hope to see you again.
Hugs,
Vicki
Thank you for the welcome and the info. It is good to know you don't have any side effects from methotrexate. It sounds like there can be a lot of them. I have been doing research on the subject. Thanks again.
Julie
Vicki,
Thank you for your reply, you sound so kind. They thought my knee was osteoarthritis but now i wonder... it went from beginning arthritis to bone on bone in 2 years and my other knee is bad too. They said my Rf was negative but my ANA was positive indicating either RA or Lupus , the rheumy says he would guess RA but the dermatologist thinks my skin rash may indicate lupus - so I have to wait until next Tues. to find out all the other test results. I was seeing the rhuemy 3 years ago when I was hospitalized for the extreme leg cramps ( a week on morphine) then high doses of prednisone to get rid of those. He suspected an autoimmune disease then but could not pinpoint anything.
I dont want to loose any HAIR AHHH - its my best asset!!!
What I need is advise , hope , and understanding so thank you!!! Thanks for the hug i needed that. Is it ok to add you to my friends list??
Hugs back to you,
Julie
Hi Julie and welcome to the RA board.
Molly
Molly
Julie, yes of course, it is okay to add me to your friends list.
I don't know what those ANA numbers mean, but a low positive ANA does not necessarily mean you have Lupus. The rash might mean Lupus though. Is it on your face and shaped like a butterfly?
At the top of the RA board page there is a link to our Community RA site. It says something like Amyb2000 blah blah. Click on that and there is information on Lupus, RA and other autoimmune diseases. You might recognize a symptom that you think is nothing. It can sometimes be very hard to narrow down which disease you have. Whatever it is, you are more than welcome to stay here. We have lots of people with something other than RA. You need to learn as much as you can about this and work with your doctor.
Don't worry about the hair loss, it will be fine. It is more of an issue when you have very thin hair to begin with. It sounds like you have a beautiful head of hair.
RA is not a death sentence, just a bump in the road. Let's get through the diagnosis first. We often hop along in your pocket for support when people have doctor's appointments. We just get silly here. I will be hopping in your pocket on Tuesday. And yes, I admit it, I get rowdy!! ;o) Feel free to vent, it really does make you feel better. We all do it at times. We understand and cyber hugs are very good!
Gentle Hugs,
Vicki
Molly,
Thank for all the info. I will read up on the sites. Its nice to know I have people out there to talk to who care and know what I'm going through. Just may have to talk to you on anxiety too!! I got results on skin biopsy today and there was no lupus!! I guess that's good to help with my diagnosis - and I get the rest of the results on Tues. (Vicki's going in my pocket -lol) so I'll read up and see what he says and let you know! I think he wanted to start Methotrexate because he believes its RA - but he decided to wait until I come back. So, I'm hanging in there until then. My kids keep me going - my 11 year old thinks mom's pretty funny - I like to goof around with him -keeps me young -and in a good mood. Talk to you later - is there also a chat for RA??? I've never done any of this before ( computer illiterate). Thanks again!
Getting less confused,
Julie
Julie
Count me in on the pocket hopping. It is loads of fun. I'm bringing the 'ritas...lets see what other wonderful surprises will come along. I'm posting ya in the Pocket Hoppers section...keep watching.
ttfn
Holly
Now that's the understatement of the decade!!!!!!
Molly
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