Do I have RA?

I am posting for the first time on this board and frankly, I am not sure which disease to post under first, but I will start here.

I have been running around in circles with doctors since December 2004. I am 61 now. For the first couple of years I would go to my internist when I did not feel well and he would send me straight to a rheumatologist. When I went to the rheumatologist he would tell me that I did not have a connective tissue disease and send me back to the internist.

I have since seen 3 other rheumatologists and 1 GI doctor. My RF has been positive and my ANA w/Reflex have been positive since my first visit to the first rheumatologist. All these doctors say I do not have RA, but my internists and other specialists say I do. Since the first rheumatologist I have been diagnosed with fibroymalgia, mixed connective tissue disease and undifferentiated connective tissue disease and IBS. I have numerous other medical problems.

My biggest problem with any doctor I see is that after the first visit I am not given the time to address all my symptoms. I am rushed in and out and often referred to another specialist. My last visit to the Rheumatologist I was told I needed to address my mental illness.

Discussing my pain and symptoms with a friend a couple of months ago she told me that I had Peripheral Neuropathy. After reading on it I am sure I have Peripheral Neuropathy. I had a quick quick rush rush visit with my internist last Tuesday and the few symptoms I was able to squeak in he told me I had Peripheral Neuropathy and to see the Rheumatologist about it. I asked him about a lump under my skin just below my index finger at the last joint, and guess what . . . he said it was a Rheumatoid Nodule. Interesting!

I was supposed to see the Rheumatologist after the internist appointment but I canceled it until next month because I could not afford a $30 and $60 office visit on the same day. The last visit to the Rheumatologist he sent me to an endo about my parathyroid. That was a waste of money because the endo claimed he could see my para in a USG and I know for a fact that he cannot. He did find 3 small thyroid nodules.

I have asthma or COPD depending on which doctor you ask; reflux, MVP, Osteoporosis; Osterarthritis, Spondyloslistheses in my neck, Spurs in my lower back, a Mengioma, HBP, MVP, Chronic Fatigue, positive Epstein Barrs, consitantly Low IgA and IgG, a swollen Larynx of which the cause has not been determined yet. Could be more, but this is all I can think of at the moment.

The highlight of 2010 is that I had Pertussis. It took 5 doctor visits and 3 doctors before someone suspected Whooping Cough decided to draw labs. She also drew labs for M Pneumoniae, and I had M Pneumoniae too. I live a very reclusive lifestyle in a rural area and go nowhere but to the doctors and Walmart to shop. Where I got Pertussis and Pneumonia is a mystery.

I was trying to find a new Internist last year and told him I had had Pertussis. He poo-pooed me and told me that I had a nervous cough. I showed him my labs and he changed his tune.

I am always in some sort of pain, along with shooting pain like nails being hammered into my feet and hands and other parts of my body, and things that feel like insect stings or bites.

This sure gets old!

So, now that I am through with my first post and a long post, I am would like some suggestions as to how I should approach my next visit with the rheumatologist.

Thanks.

Thank you for your post De La Rosa! It is reassuring (in a way) to know that I am not alone when it comes to doctors not listening. Sometimes I feel like there is something about me that doctors don't like.

The search for a decent doctor is costly and frustrating. I go for periods of time when I only go to a doctor for refills, then I have renewed hope that someone, maybe someone, can help me, and I start my search again.

Since 2004 I keep a binder, organized with tabs, with every lab report and radiograph report I have had. I even have a few CDs in the side pocket. I also keep a personal spread sheet of every lab test and have the out of range tests highlighted with a colored back ground.

I enter every appointment with 2 lists, one for me and one for the doctor, of my symptoms, medications, notations of recent changes, all test results if it is a new doctor, and new tests results if not a new doctor, and my spread sheet. I love doing research and I bring in copies of articles that I feel are from reliable sources on the topics I want to discuss. I have had doctors ask just to keep my spread sheet. The endo told me the only people he has seen as prepared for any appointment are NASA engineers.

But then the endo wants to focus on my thyroid and not my parathyroid and it was the para I was sent to see him about. The immunologist wants to focus on giving me allergy tests where I have gone in to discuss my low Igs. The RA doctors want to say I do not have RA but have Fibro and does not want to listen to my current problems. And when I had Pertussis and M Pnuemoniae the internist at the time thought it was my blood pressure medication making me cough and takes me off my blood pressure medication and refuses to give me anything but a diuretic. He knows 2 family members have had Aortic Dissections in the last 2 years and he refuses to give me an appropriate medication. I go back a week later with my blood pressure 160/100 and he still will not give me an appropriate medication. He does a chest x-ray and says my lungs are fine.

A couple of days later I go to a walk in clinic for help. My blood pressure is 170/112. They do not let me leave without an appropriate blood pressure medication sample and prescription, and make me an appointment to see a cardiologist. They take a chest x-ray and I have a collapsed lung. Da?

I decide to see the internist who owns the walk in clinic. You make appointments to see him and just walk in to see a PA on the walk in side. It was him who told me this past Tuesday that he does not have time to listen to all my complaints, but he does give me refills.

My gut and research tells me I have RA and I now have my first nodule 6 1/2 years after first presenting with RA symptoms. I have to wonder if someone had bothered to really listen to me I would have been treated earlier. Maybe the medical community could learn something from my ill defined original symptoms and positive labs and help us earlier!

I had never heard of a rheumatologist until I went to have my well woman early 2005. When she touched my arm lightly pain jolted up my arm and through my back. It was she who asked about my other symptoms such as having pain getting in and out of the car, doing house work, feeling like my legs were bowed, feeling like I was walking on rocks, etc. She told me to see a rheumatologist. And since I have been running in circles and getting nowhere.

The internist tells me to see the RA doc for Peripheral Neuropathy, but I know I should see a Neuro.

In defense of the doctors, I think a problem is that I have multiple problems and they just don't know where to begin with me. Or maybe they just don't care . . . like the RA doctor said . . . you need to address your Mental Illness.

That's the problem with autoimmune issues. You have so many problems going on that no one wants to look at the big picture. The specialists want to focus on just their area.
If it wasn't for an allergist suspecting something else when I went to him about a rash I would have had never known I had lupus.

I know it's a chore to hunt for a doctor, but I suggest when you go to the next doctor don't show him the book right away. Doctors are like mechanics. They don't want to know what you think is wrong with the car right off. Present him with all of the symptoms first. Then ask him what he thinks it is. If he thinks it something that you have been tested for already then tell him that has been tested for and show him that test result. Don't push it all on him at once or he'll balk.

I am around the Houston area, (Pearland)..I can give you the name of a good Rheumy
and he will sit down and talk to you...it's Dr. Waller he's off I-45 South at Fuqua..Try this doctor
he does take time with you..Fire any doctor that won't sit and take time with you as that's
not giving you the respect you deserve...you do deserve respect, we all do....it'll be worth
the travel time to see this doctor...he'll redo your labs...do a mri...ect...you might want to
consider a pm doctor for the neuropathy and fibro pain...
I once saw an asthma doctor he said
it was all in my head and "that I was one of those moms going from doctor to doctor", I went
to him as I was coughing at night, he did even check my lung function two weeks later
had a chest x ray (ordered by pcp) that showed pneumonia, two places in my lungs and I had to be on two rounds of
Levaquin to get over it and had a 103. fever...(not one doctor has heard the pneumonia,and
I've had pneumonia 4 times in my life, it always takes a chest x ray) so yeah there are bad doctors out there, don't let them
get to you, you will find good doctors...one's that are right for you....
I wish you well in your quest for a good doctor...keep us posted and well wishes...start with Dr. Waller...

Chartreux, I am SO sorry, I just went on about myself and did not tell you how sorry I am to have read about your terrible doctor experiences.

I know exactly how you felt, and exactly what you went through! The journey is very frustrating! When I had Pertussis and M Pneumonia I had one doctor tell me that he wanted to give me a medication that would numb my throat so I would not cough. He might as well have told me he thought I was a crazy woman! That was about a week before another doctor pulled the labs and diagnosed me. I was no longer contagious at that time, but I had already been coughing for a couple of months and was on the nebulizer 4 to 5 times a day, even though my Peak Flows did not change. I could not breathe. It felt like asthma that would not go away.

The State of Texas Health Department called me and asked me questions about Pertussis before the doctor called to say I had it. It is a reportable disease. They would not out-right tell me I had it and said they were calling me only because the lab was required by law to report the test was done. Now, why would they call me if the lab came back negative? I did not believe the State nurse that called me. She knew I had Pertussis and would not tell me. It was near 5pm on a Friday. I had to want until Monday for the doctor to call me with the report. EEEERRR! Frankly sometimes I think about framing the lab report since the antibodies were so high and 2 other doctors did not have a clue. I rarely run fevers and I think that makes doctors think I am just some crazy woman with strange ticks or wanting attention. If I was, it would be an expensive way of getting it. I did not run a fever when I had Pertussis and M Pneumoniae.

My body temperature is all over the place, but usually around 97.2. When I am the sickest it goes only up to 99.1. At 99.1. In my mind having a low body temperature is a clue that something is not working like my Igs.

Off to start dinner.

Joy, Do they really believe you when you tell them 99.1 is a whopping fever? Mine seem to not believe me. I know that in the Houston school district a child is not considered sick unless he/she is running 99.

I called and there is a cancellation for tomorrow, but I will not have cash until the middle of July when I get my next SSDI check and they do not take the only credit card I have, AMEX. There was a time after my first husband died that I refer to as my "pathetic years". I think I might be back there again as I am feeling pretty pathetic right now.

My daughter is a Houston school teacher. I just called her and she can come with me on July 22, so I have made an appointment for then. I should be getting the new patient packet by email in a few minutes.

I am seeing Sarah.

Thanks for all your information Chartreux!

Post Edited (bumpercar) : 6/28/2011 10:29:36 AM (GMT-6)

Bumper...please keep searching for a better rheumy...you should never be dismissed in such a manner! Since it is summer vacation and school is out, I took my daughter who is 14 1/2 with me to my rheumy appointment today, and this morning of all mornings she woke up with her knee painful, swollen and red. After my time was wrapping up, he took the time to answer a couple of questions about my daughter, so even though I have complained about mine a time or two he is a good doctor.  You need to find someone that will listen to your symptoms, not tell you to seek mental health treatment, that is horrid! Shame on that rheumy!

As for the low body temp..I found that interesting, and for the longest time would try different thermometers, since mine is also around 97.1.  When it reaches 98.9 that is high for me as well, but *normal* at the doctors office.

The low body temperature is an interesting question.

I had one doctor tell me that connective tissue diseases cause low grade fevers. I asked the last Rheumy and he said that is not true, but I did not ask him about my temperature.

When I see the new Rheumy in July I will add that question to my list.

How about rheumatoid nodules. Do many of you have them? Or not?

Thanks.

Chartreux,

I am seeing Dr. Waller's PA this Friday at 11am. One form asks who referred me and I do not know your name, but I guess that does not really matter.

I am stressing out a little mostly because I will be away from my reclusive lifestyle for a few day. I am going to stay with my daughter in Houston Wednesday and Thursday night and she will go with me to the appointment.

Does Dr. Waller charge his patients for copies of labs and tests?

Thanks.

Well wishes on your big day tomorrow...

Oh dear!!!!!!!!!! I was fuming when I read your post!!!! A psych!!! She needs a psych!!! and some more education! what nerve, I am so sorry you had such a terrible appointment That is wrong on so many levels!!! Simply because you have a negative rheumatoid factor does not dismiss RA, she is nuts! Gentle hugs to you and please, please don't give up.

Therapy aside bumper, and I am so sorry you had to deal with all of that with your father. My son was also a victim of assault and spent several years in and out hospitals and therapy, so I know the damage is long lasting. If you are having pain, abnormal labs, not well, you need to find a doctor that will treat your symptoms, even when your labs are within range. This is what a good RA doctor does. I don't think you are wearing a sign hun, I just think you haven't had much luck in finding a good doctor who is willing to listen.