My turn to vent... | Arthritis Information

 

First rant.  A few weeks ago I went to see a new doc for my back.  I have pretty bad degenerative disc disease in L4 and L5, and have been getting epidural pain injections since August.  I also have a herniated disc in my neck and issues with my shoulders as well.  When he was examining me he was talking about treatment and used the phrase "suspected rheumatoid arthritis".   Excuse me, there is nothing suspected about my RA - I live with it every day.

 

Second rant.  I went to a knee specialist this past week.  Again, I told him that I have RA.  Immediately he asked me how I was diagnosed because a lot of times you can be diagnosed with RA when it really isn't RA.  He then proceeded to explain the disease process to me.   He was very nice and I believe he was only trying to be helpful.   He wanted to know where I have pain.  I told him that on my nuclear bone scan I had arthritic uptake absolutely everywhere, but in the beginning I had the most pain in the base of my thumbs.  He said that the base of the thumbs is the most common joint in women for osteoarthritis.  I tried to tell him the biggest problems, not go into minute detail about everything that has plagued me for the past two years.  Which brings me to my third rant. 

 

Two years ago when I first started experiencing bilateral pain in my hands I went through the whole chain of command starting with my pcp who referred me to a hand specialist in June.  I had been doing an unusually large amount of lawn and garden work at the time.  Since my xrays were clean, and my pcp had checked me for RA with a negative result, the hand doctor gave me a thin leather strip that hooked around my thumb for support when I gardened.   He also prescribed a rx strength anti-inflammatory.  Three months later the pain was worse, and I was experiencing a lot of fatigue.  I also gained 10 pounds unexplicably.  The hand doctor graduated me to a more supportive brace,  injected my right thumb joint, and changed my anti-inflammatory.  The injection did nothing for my pain.  In November I went again and he sent me for a nuclear scan of my hands.  The report indicated osteoarthritis.  I asked him why nothing we were trying was giving me even the slightest relief.  He told me that I was "a bit of a mystery" to him, and that basically he was doing everything he could for me.   Here's the best part, he literally told me that he could send me to a rheumatologist but he didn't think that would do any good.  I asked about an MRI and he reluctantly agreed to do it.  When I got home from that appointment, I felt completely frustrated.  My family was to the point to where they thought I must be depressed or a hypochondriac.  Through Christmas that year I got progressively more ill.  I started having pain in more places, I was always tired, I had gained another 10 pounds, I was dropping things........  I decided I wasn't going back to the hand specialist, cancelled the mri, and scheduled an appointment with a rheumatologist.

 

The first rheumatologist I saw a the end of January '07.  He did basic blood tests, no xrays, and examined me while I was in my street clothes.  (I wore navy blue opaque tights, a denim skirt and a sweater - what the hell was he supposed to be able to examine through my clothes?)  He listened to my joints heard nothing and told me I was fine.  Three weeks later he told me my bloodwork was fine and gave me a couple of scrips for pain and inflammation.  He also injected my right thumb and got it in just the right place and I got relief.  I left optimistic that if I went to someone capable of giving me pain relief and my blood work showed nothing then I was in the right place - nevermind the whole examine me through my clothes thing.  I saw him through the month of March and I began to feel the overwhelming fatigue sweeping over me again. 

 

By chance I ran into a friend who had been experiencing her own set of symptoms similar to mine.  She insisted that I call her rheumatologist because he was helping her.  I thought to myself that if I continue feeling poorly, I would get another opinion in the future.  The whole day I kept thinking about her suggestion and decided to call and schedule an appointment figuring it would be a couple of months before I would be seen.  It was 4:30 on a Friday when I called.  The office had just gotten a cancellation for the following Monday could I be there at 6 a.m.?  Ouch!  It's an hours drive from my house which meant I would be up 4:30 to get there on time.   Thankfully I took the appointment.

 

It turns out that the rheumatologist is one of the top 10 in the U.S. so lucky me.  My appointment began with a 40 minute consult with the doctor in his personal office.  Next I went to the exam room where I changed into the lovely paper dress.  Next I did extensive blood work, xrays, and a bone density scan.  I did a nuclear bone scan of my entire body a couple of days later.  Three weeks later I am diagnosed with rheumatoid arthritis with anti-ccp antibody reading positive.  I mentioned to the dr. that I had had the nuclear bone scan of my hands done in November and asked if something could have changed between now and then.  Could I have somehow switched from osteo to rheumatoid in that period of time?  Of course the answer was no...  I thank God I got a diagnosis when I did.  I have graduated from plaquenil to mtx and enbrel (humira first) and I can't say that we have found the right balance of everything yet.   I have signs of damage on my right foot, but nothing horrible.  My hands are red and swollen, but no visible signs of damage to strangers.  I struggle with the same things we all suffer with having this disease.  

 

My point in going into so much detail is to show why I get so frustrated when my diagnosis is questioned by others.  I am young 41, and I don't look sick so I guess that is part of the problem.  But,  I have been a good, responsible patient.  I read everything I can regarding my illness.  I trust my doctor and feel like I am in very good hands.  Having faith in my rheumatologist and the care he gives me is incredibly important to my peace of mind.  It's one thing I don't have to worry about.  I hate having my diagnosis questioned by a specialist in another field.  I know their questions are meant to help them figure out how to treat me, and I realize that not all patients take time to be educated regarding their health.  But it drives me crazy.  I start thinking what if I don't have RA and I'm not doing what I need to do?  Afterall, it's been almost a year and I still have a lot of symptoms.  I have no sense of how I should be feeling.  I know I am not the same as I was, and that my life has drastically changed.  I have decided that from now on I will be proactive bring the extensive dictation report that my rheumatologist does at the end of my appointments and give them to whatever specialist I am seeing.  Maybe that will help them feel as confident in my diagnosis as I do. 

 

Rant over.  Thanks to anyone who made to the end of this very long post.

 

 

 

 

 

 

Why do people question other people? *shrugs* Cause they're ignorant? LoL I wish I had an answer for you!!! Just know that we're here for you!

Pip