Accepting the diagnosis

By Buttercup Saturday, March 10, 2012

This could possibly be a very long first post.  Just warning you.  

 

This all started nearly two years ago.  I was having difficulties with a random and strange allergic reaction where my eyes would quite suddenly swell nearly shut and I'd get hives.  My GP sent me to an allergist who found nothing new in the things I've always been allergic to after lots of testing and jamming a camera up my nose several times.  (I never did like him much, but the camera cemented that one, especially when my insurance called it unauthorized surgery.)  He wound up prescribing some additional allergy meds and the symptoms eventually waned and stopped happening altogether.  Maybe the allergies had absolutely nothing to do with my eventual RA diagnosis, but that's when the GP did a complete blood count and said, "Your white cell count is very high and you have a very high CRP level."  She put me on antibiotics for a couple of weeks, thinking it was an infection and asked me to come back to check the blood work.  Of course that didn't fix it.  When I went in for a re-check a couple of weeks later, I told her that my feet were hurting.  She said to lose some weight.  She prescribed more antibiotics and I went on my way.  My feet kept hurting, but I finished the antibiotics and didn't bother going back for a few months.  I felt fine in every other way.  

 

A few months later, I was feeling exhausted all the time, my feet hurt and were going sort of tingly numb as well.  I developed a rash on my shins.  It was extremely itchy and driving me crazy, and I couldn't make it go away.  By the time I'd nearly scratched myself into an infection, I took it to the GP.  She immediately put me on prednisone and antibiotics, exclaiming that I should have come in MUCH sooner.  I told her my feet were still hurting.  She said to lose some weight.  She took more blood and called me to tell me that my CRP was still incredibly high, but let's check it again after the antibiotics.  I felt lousy, but the rash went away and I gained some weight on the predinisone.  I also lost my temper and screamed at my mother-in-law in a very uncharacteristic way.  Don't you love prednisone?  

 

Another blood check a couple of weeks later revealed that my CRP was elevated and my white count was high, and my feet still hurt.  She said I really needed to lose some weight and changed my blood pressure medication.  Two weeks later, another blood check revealed the same things, so she referred me to a hematologist.  He was a very nice man, but the first thing he wanted to do was a bone marrow biopsy, which scared the living hell out of me, my husband, and my children.  It wasn't much fun, either, but we all survived and found out that there was nothing wrong.  My white count was still very high and my CRP was going off the proverbial charts, though.  

V, Health Guide
3/11/12 9:10am

Hello, and welcome to HC.  I found your post to be fascinating. I am sorry you have gone through all this nonsense. From what you have said, it does sound as though you have RA, but my goodness, what is wrong with your GP?  I won't go on and on, even though I would like to.  Let's just say that I think you have really gotten the run around, and I'm sorry.

 

In the interest of full disclosure, I will tell you that I have seronegative RA and becdause of that, it took me years ot get a diagnosis.  Consequently, I have permanent joint damage.  I don't want that to happen to you.

 

It sounds as though you do have a good Rheumy.  He is treating you aggressively.  Unfortunately, it takes months for RA meds to work to the point of providing relief.

 

As for the numbness in your feet.  I am right there with you on this one.  I just had an MRI of my lower back becasue of the numbness in my right foot.  Turns out the numbness is caused from the swelling in my ankles pressing on a nerve.  Go figure!  I never thought of that.  I was sure it was coming from my lower back, but I was wrong.  My ortho prescribed Neurotin, and it is helping a lot.  You might ask your doc about that med. It also helps with the aches I get from Fibromyalgia, so I am happy with this med.

 

I think you need to take a deep breath and try to relax.  It takes a while for an RA diagnosis to sink in.   Please check out 5 Things the Newly Diagnosed Should Do and let us know how your treatment plan is going.  Ask any questions you would like, and post often.  We are here to help each other.

 

Blessings,

V

Lene Andersen, Health Guide
3/12/12 12:13pm

first, welcome to HealthCentral's RA community! I am very glad that you've found us!

 

Second, I need to go bang my head against the wall. It is really sad that family practitioners don't know more about RA than they do. Very few seem to understand that you can be seronegative, that is test negative for RA factor when, in fact, 20-30% of people with RA are seronegative. Given your description of the process, I sort of wonder whether your family doctor has some sort of blinders with RA, as high CRP, pain and stiffness would seem to indicate it might be worth sending you to a rheumatologist. I mean, as long as she was sending you to endocrinologists, cardiologists and pretty much everyone else.

 

The good news is that it sounds as if you have found a wonderful rheumatologist. Hold on to him! Having a good rheumatologist is half the battle.

 

Given your family history and your symptoms, your rheumatologist has a really good basis for his diagnosis. However, you have the option to seek a second opinion. I assume that you have Googled RA extensively, but you may want to check out our section about the basics of RA.

 

Having RA doesn't mean that there can't be something else going on with you and your family doctor is right to send you to other specialists, such as an endocrinologist or, given the numbness in your feet, a neurologist. Numbness is usually an indication of a nerve compressed in some way. You may have some involvement in your spine and that can compress nerves - you may want to talk to your PCP or rheumatologist about a referral to an orthopedic surgeon. It could also be that once your RA gets under control, the numbness will get better.

 

Sometimes, people who won autoimmune disease will pick up another one. . Not that I want to give you more things to Google so you can drive yourself even further 'round the bend, but you may want to look into Ankylosing Spondylitis - it's a type of inflammatory arthritis that affects the spine in particular, potentially causing fusing and narrowing among the vertebrae. This could possibly lead to numbness in your feet. Talk to your rheumatologist about this and ask for an x-ray/CT/MRI of your spine.

 

When you're ready, you may also want to read my post for people who are new to RA. It's a sort of summary post that collects links to information and archives on numerous aspects of living well with RA. Which is indeed very possible. It takes a while to get there, though.

 

hang in there. It gets easier.

3/12/12 12:57pm

Thank you both for wading through all that!  

 

I think my rheumatologist is an absolute gem.  From everything I've read, it sounds like a good rheumy is hard to find.  If I had my way, I'd never see another doctor.  This man actually listens!  And cares!  He had me bring my husband in for a meeting to discuss how this diagnosis would change things and what kind of support I'd need.  

 

I guess I'm still trying to deny my RA.  I really don't want anything chronic.  I want something that a 10-day course of antibiotics will fix, please!  I'm definitely struggling with the changes it's bringing to my life.  Everything about my life has been squeezed into the shape of my disease.  Can I go to my son's parent/teacher conferences and still managet to walk for the rest of the week?  Will my dog ever forgive me for her lack of exercise?  When is my husband going to get tired of making accommodations for me?  He's a very patient soul and insists that this is part of "for better or worse", but it only seems to be getting worse lately.  How long is he, with all his military precision going to tolerate not being able to make RA stand at attention and march?  I feel like throwing a three-year-old's temper tantrum.  I'd like to kick and scream and wail, "Nooooooooo," at the top of my lungs.  I know.  Those things weren't very effective for my children and won't change anything for me either.  

 

 

3/12/12 12:57pm

Thank you both for wading through all that!  

 

I think my rheumatologist is an absolute gem.  From everything I've read, it sounds like a good rheumy is hard to find.  If I had my way, I'd never see another doctor.  This man actually listens!  And cares!  He had me bring my husband in for a meeting to discuss how this diagnosis would change things and what kind of support I'd need.  

 

I guess I'm still trying to deny my RA.  I really don't want anything chronic.  I want something that a 10-day course of antibiotics will fix, please!  I'm definitely struggling with the changes it's bringing to my life.  Everything about my life has been squeezed into the shape of my disease.  Can I go to my son's parent/teacher conferences and still managet to walk for the rest of the week?  Will my dog ever forgive me for her lack of exercise?  When is my husband going to get tired of making accommodations for me?  He's a very patient soul and insists that this is part of "for better or worse", but it only seems to be getting worse lately.  How long is he, with all his military precision going to tolerate not being able to make RA stand at attention and march?  I feel like throwing a three-year-old's temper tantrum.  I'd like to kick and scream and wail, "Nooooooooo," at the top of my lungs.  I know.  Those things weren't very effective for my children and won't change anything for me either.  

 

 

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By Buttercup— Last Modified: 03/19/12, First Published: 03/10/12