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Rheumatoid Arthritis
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Posted 5/25/2012 6:49 PM (GMT 0)
I am new here and currently going through absolute misery trying to find an accurate diagnosis.

I have not been diagnosed with RA at this point and have just come from a nightmare appt with a rheumatologist.

Is it okay to post here to get advice about getting a diagnosis?

Please forgive my forum ettiquette issues... lol

I have been diagnosed with fibromyalgia and my Internist believes I have some kind of arthritis issues going on.

I have a high ESR, a low positive RA factor, a rising CRP level and massive pain in the mornings upon waking.  It can take 2 to 3 hours for me to work through the pain and get on with my day.

And if I'm really busy at work or with my kids and I over do it I can be out of commission and barely able to move for several days.

I have had instances of hideous pain in my jaw that three oral surgeons and an ENT have determined are not TMJ.

This has been going on for about two years now and seems to be getting worse.

My Internist sent me to a rheumatologist that looked at my tests and squeezed my joints and then informed me that I was completely fine and that if I weren't fat I wouldn't be going through this and if I just lose weight everything will be fine.

Is that really the way it goes?

I left her office sobbing and feeling as though I am never going to get to the bottom of what is truly wrong with me.

Was getting a diagnosis difficult for others here?

I don't WANT to have RA.

I just want to have a name for what is wrong with me (besides overweight! LOL)

Thank you.

Posted 5/25/2012 9:03 PM (GMT 0)

 

Good heavens.  No that is not the way it goes.  Poor you.     Sorry to hear that you are in so much pain and still in the dark.  I didn't have that many painful joints when I was dxd.  I had the bad jaw pain years later.  Are your knuckles really warm, swollen and a dark pink or red colour?  That's normally a sign also.  You may have a low grade temperature too. 

 

The first Drs. I went to were GPs.  The second one knew I had Arthritis of some sort and referred me to a Rheumatologist where I was dxd. after the positive RF and other high test results came back plus the physical exam.  Your RF was positive.  Some People have a negative RF and they may still have RA and are dxd.

 

Did this Rheumatologist say why she thought that you didn't have RA?  She must have good reasons.  Being over-weight is not one of them.  She will send her opinion and reasons to your Internist.  I would hope that your Internist will refer you to another Rheumatologist for a second opinion if he is not satisfied with her comments.

 

I hope that they find out what your condition is and soon.  You do need treatment for whatever it is.  Good luck Hon. :-)

Posted 5/25/2012 9:09 PM (GMT 0)
What's your ANA level and pattern?
Posted 5/25/2012 9:33 PM (GMT 0)
Thanks everyone for your replies!
I'm slowly coming down from my shock at the outcome of the visit this morning. lol



The ANA level is low and the pattern was not listed on the bloodwork that I could see.
On the blood test it says the ANA Screen was 0.8
On the ANA Panel the highest level was for the Histone at 19.8

Everything else on the ANA were at lower amounts.
Posted 5/25/2012 9:57 PM (GMT 0)
Did it list your titer?
Posted 5/26/2012 12:12 AM (GMT 0)
No, for some reason none of their measurements were in titer. Just units.
Very frustrating when trying to compare and figure things out.
Posted 5/26/2012 1:01 AM (GMT 0)
Wow! There are really some bad RD's out there. First of all, let me put your mind at ease. There is NOTHING wrong with you going to an RD, and being overweight isn't the issue. Most of us are overweight because we cannot exercise except in a pool. Hugs to you.

Secondly, please learn from my experiences. I have sero-negative RA. Most of my blood work is completdely NORMAL. My CRP does get elevated but it isn't super, super high, even when my neck, shoulders, elbows, wrists, hands, fingers, knees, ankles and feet are viiably swollen and so painful I can't move. I was undiagnosed for ten years because I saw two bad RDs. My current RD diagnosed me on the spot. My left wrist is now permanently swollen. I have permanent damage/bone erosions. All because I saw RD's who didn't want or know how to diagnose RA when the blood tests are negative. Honestly, blood work is only one of the things considered for an RA diagnosis, and it is not a requirement for a diagnosis. Please make an appt w/another RD. I am so sorry you went through what you did w/that bad doc. One of the RDs I went to at first, thought I was a drug seeker. What a jerk!!!

Hope you find a good doc soon!

Hugs,
Vannie
Posted 6/1/2012 10:10 PM (GMT 0)
The others are correct you need another RA Doctor, never let your
weight be n issue and this doctor was extremely rude. Please look
into getting another RA Doctor and ask for mri's of your hands
and if it shows up on the mri that is definitive proof..
Many well wishes and keep us posted as we do care.
Posted 6/1/2012 11:16 PM (GMT 0)
Wow. I am fat and my rhuemy would never say such a thing. She has suggested that losing weight would help my arthritic knee but not anything else.
And how does your doc think losing weight will help your jaw pain-he is a dufus and you need to find a good rhuematologist.
Posted 6/8/2012 7:47 PM (GMT 0)
Hello all!
I was looking for info to maybe help me pinpoint some of what's been going on with me. I can describe my pain to my husband, but, as it's not his pain, he doesn't fully understand. I've had osteo since I was a teenager, with intermittent bouts of tendinitis. about a year ago, the base knuckle of my right middle finger (of all places!! lol) became painful. On a daily basis painful. I can't open jars well anymore, nor can I lift a gallon of milk. Some days, I can barely hold a pen.
Anyways..I started looking for more info after a bout I had this last month. My back and hands both had been hurting quite badly for a period of a couple months. Nothing has really helped. But last month was the worst. Right before I got a break in the pain, it felt like all the bones from my fingers on up through both of my elbows were on fire. It felt like someone was trying to drill through my arms as well. It was intense and just incredibly uncomfortable. I have no dr and no health insurance. Our family is riddled with autoimmune disorders-Dad has Crohn's, Mom has Lupus and RA, Sister has RA (so far...and I don't think they've figured out exactly what all is wrong with her.) But I've had the pain for a while. It's the most intense in my right hand/right arm, which really sucks as I'm right handed. Any info you all might be able to provide would be a blessing.
I'm not looking for a dx or anything like that. Was more or less just wondering if what I've been experiencing could possibly be RA. With the exception of a day or two break, this has been going on for a few months in this fashion and going on ten months with constantly sore finger joints.
-Chelle

Post Edited (Chelleizadork) : 6/8/2012 4:01:21 PM (GMT-6)

Posted 6/9/2012 4:53 AM (GMT 0)
Chelle...o my gosh! This sounds exactly like me! I am baffled! I too had one knuckle on my right hand start to become very painful then all of a sudden i woke in the middle if the night with a feeling that my hand and fingers were on fire! It brought years to my eyes! I can no longer open a jar or a new gallon of milk, and forget carrying in heavy groceries! And my right arm is more severe than left.
My family too has autoimmune diseases all over the place!

You really need to be seen by a dr!!! If you do have ra, you will need to start treatment as quickly as possible because the quicker treatment begins, the more joint damage can be prevented!

It will be a little tricky without health insurance or an established dr but there are people and agencies whose job it is to help. I would suggest starting by going to a community health clinic in your area. (I assume you are in US?) They can start the process of diagnosis and referral to specialist. Also they should have some sort of sliding fee schedule based on your income. If you do have ra, you might qualify for government assisted health insurance. If you are unawsre of a community clinic, you can call the closest hospital and speak with a docial worker who should be able to help you.

Good luck to you, hopefully uou will find some answers and relief soon!
BROOKE
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