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mjd123 05-06-2012 11:13 AM

First visit with RD
So... the doc seemed to be in a hurry. She was wearing a short, satin, Cinderella -like, cocktail dress when she came in and the nurse informed me that she would come back for my vitals so the doc could hurry in. We talked for 20 minutes. She said my pinkish joint looked "really weird " but not all of my symptoms sounded like an auto immune disease and asked about nerve conduction studies. She said she really didn't think it was auto immune, but some symptoms could suggest an autoimmune disease she ordered a complete RA and Lupus panel without RF and ANA. I guess she committed those because they were negative in March. She did these to rule out autoimmune diseases and said she thinks this is more mechanical in nature. I am not sure why, but she said something about the way I described some of the pain as an ache or burn when it is prolonged. She did not want to see the pictures I took of the bruising in my hands and ankles.

Since then, my symptoms have remained the same, but I am handling the mornings better and don't feel like I have the flu anymore. I am still having joint pain in the same joints, eye irritation, shortness of breath, and bruising. My elbow became sore all day one day last week and the pain started to radiate as it does when it affects my elbow. Then the aching started and my wrist has a painful localized burning feeling with a raised red area that screamed swollen blood vessel and then five minutes later it popped. This must be some form of vasculitis which is auto immune so I am very confused as to why she was not interested in the bruising.

In the mean time I continue to research. My husband is much more helpful and understanding but is still somewhat frustrated sigh my obsession to figure out what is going very wrong with me. The other night I woke up very uncomfortable in my most comfortable propped up position and felt the need to move. I was frozen. That hes never happened before. He wiggled and nudged me around until I could get the motivation or unfrozen whatever ghat was feeling to go away. Somebody has to figure this out and I am not feeling this doctor is starting down the right path or hearing me correctly. I almost want the blood tests to show something so we have a pplace to start. I am worried this is going to be one of those cases where no one knows and I am brushed off. When do they dart yo take you seriously.? When they see it? I showed her the changes in my hand and she said bone changers are normal for everyone and they can happen very fast. She said this is normal part of aging and if I watched the changes I would make my self nuts. I am only thirty four. They only thing she deems puzzled by ese my "really weird" pinky joint. I should have asked her why she thought. It was weird and not the others.


jennybyc 05-06-2012 12:49 PM

Re: First visit with RD
Some days doc's are in a rush and you never know a speech somewhere, hospital fund raiser, personal stuff...who knows. But it does happen. Don't judge her by this first appointment.

Wait on the blood work. A negative rheumatoid factor is inconsequential.....25% of those with Ra are negative. A negative ANA is not a big deal either as the ANA can go up and down and from many different things...including medications. What she is now running are the more sensitive tests.

But having battled with autoimmune for the past 35 years, I know how frustrating it can be as I'm still sero negative. I had bad OA for years and years and got upgraded to having RA 7 years ago but just last month, my doc admitted I probably had Ra all along but a rare form that hits soft tissues instead of joints. I've battled tendinitis in just about every joint in my body for the past 35 years. It Ra way to test for it. But it all went away when I started a biologic drug for Ra and when they had to stop it for surgery, the joints stayed okay but all the tendinitis came back. Surprise! BTW, my Ra was finally diagnosed by picked up the swollen synovial membrane around my wrist.

The problem with autoimmune disorders is they know about a lot of them but they don't have good tests for any of them. For Ra, they have "criteria" where you have to 4 out of 7(and only 1 is blood work) and I think lupus is 6 out of 10 criteria. That is how they diagnose these many do you have, what they are and what category does it fit it.

The best way to figure it all out is to find a doc you do like and stick it out with them while they put the puzzle together.

Bruising around a joint can come from different things too. I had a wrist that kept bruising and it turned out to be a sharp bone spur that was right under a blood vessel and it kept breaking it open when I moved. Tendons can get so swollen they will get small tears in the tendon or the tendon sheath and that produces bruising as well. Vasculitis is a remote possibility but that tends to make you really sick as it doesn't just hit a joint or 2 but tends to affect the entire body and when it affects the brain, you know it. And your Sed Rate should be sky high with that as well as the CRP.

It's a tough, tough field to work in. So many people just don't present with anything concrete and it becomes a waiting game until you know enough to make a firm diagnosis. My doc is wonderful but he kept injecting those darn tendons until my entire body started to freeze up and still, no Ra diagnosis....he simply had never seen anything like what I have so he didn't know. But as soon as 1 joint swelled up and turned red, I was in the MRI machine and getting diagnosed. The Ra tendinitis came from cause and effect...stopped the meds and it all came back. Shocked me for sure...him too.

So hang in there and see what comes from the tests. If she rushes you again, then consider finding someone else unless you feel strong enough to confront her on it. Then you get copies of all your test results and go looking. It's hard finding a good doc who takes their time with you. I found one and will never let go! He's worth his weight in gold....even if he did miss a diagnosis for way too many years.


rileygirl 05-06-2012 03:04 PM

Re: First visit with RD
Sorry your first visit didn't go so well :(

I know what you mean about almost wishing something would come up positive in the bloodwork, just so they would take you seriously. Thankfully, my doc isn't stuck on bloodwork alone. I look good on paper! lol

Hopefully your next time will go better with her. If you feel rushed again and that she is not taking you seriously, find another one. Nobody should have to suffer when there is help out there to be had.

Keep us posted!

mjd123 05-06-2012 07:01 PM

Re: First visit with RD
I am not trying to be a turd, but I hurt. I do have the swollen reddish purple knuckles and the bruising is on my hands, wrists, ankles, firearms, and starting on my calf. No toes or fingers. I have been trying to take easy today because it is everywhere and didn't want aggravate it. Then I felt a sharp pain (almost a shift or pop) in my wrist and it was done. Its now wrapped straight.

Oh... and I just found a new bald spot on my head.

Thank you all for these posts. It helps to know I am not really not the only one although I am sorry that anyone has to deal with this.

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