Why your rheumatologist needs to examine your joints at every appointment

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My hands are terrible. I know this. I have very little grip strength, poor dexterity and no fine motor skills.  Which means I drop a LOT of stuff.  Stuff that breaks and makes a big crashing noise.  No one even flinches it happens so often.

I assumed this was because I have rheumatoid arthritis and my hands are badly affected.  But this is not the case.  When I saw my spinal surgeon three weeks ago, he examined my hands and found severe muscle wastage in my hands and told me I had cubital tunnel syndrome.

I asked to be referred to an upper limb orthopedic surgeon, the same lady who did my shoulder surgery almost two years ago.

She examined my hands.

She is a very blunt lady. And she doesn’t do medical speak. She does normal-person-in-a-bar speak.  She said ‘Holy shit, are you seeing a rheumatologist regularly?  And why the hell hasn’t he noticed your hands are this bad?’

I told her my rheumatologist doesn’t really examine my hands often, she’s a she, and I thought it was just RA. I can’t remember the last time she really looked at my hands.

My surgeon asked who she was and went on a rant.  Told me that she should have picked this up. That clearly my hands have been wasting away for a very long time. Years.  That I have very advanced disease.  That I am now very disabled and it could have been prevented.  That she hoped surgery could help, and give me at least 50% function back.  But most certainly if I don’t have the surgery the wasting and nerve damage will progress I’ll most likely lose all function in my both my hands.

What I have is cubital tunnel syndrome.  All the nerves that feed your hands/fingers run through a small groove in your elbow.  These nerves can become entrapped and impinged. If they are compressed long term, the nerves start to die.  And when the nerves no longer function, you can no longer move your fingers.  And then the muscles start to waste.  And your hands become pretty much useless, things that you use with pressure but no finesse.  You develop claw hand, which is pretty self-explanatory, especially in the little finger and ring finger.  But ultimately your entire hand becomes numb and you feel constant, painful pins and needles.  As the damage progresses this becomes permanent.

The nerves can become compressed for a variety of reasons, but in my case, my elbows are constantly inflamed because of rheumatoid arthritis.

She told me that we could do a nerve conduction test, but she did a physical exam and I have no finger strength, I can barely move my fingers independently and it’s very clear that the nerves are and have been compressed for a very long time.

I then told her my neurologist had a nerve compression test, which was negative.

She then said ‘I bet it was Dr XXXX.  He’s a dickhead!!!’

Like I said, she’s very blunt!

I laughed, because she was right.  She named my neurologist.  The same neurologist who keeps changing his mind about my brain scans.  She told me I need a new neurologist.  Stupidly I didn’t ask her who she would recommend, but I will.  Because I am booked in for surgery to create a new pathway for my ulnar nerve and hopefully relieve the nerve compression.  So I’ll ask her then.

She usually does one arm at a time, but she said she remembered three things about me very clearly.

One, I’m terrified of anesthetic.  Two, I am on disability, and don’t have a lot of money.  And three, I recovered in record time from my shoulder surgery, with no help at home.  So she said she will do both arms at once for me. This means one anesthetic, one anesthetic fee, one hospital fee, and her fee will also be lower. She joked that she does the second elbow at half price when she does them together.

She did warn me that it’s going to suck to have them both done at once.  But she said she had a feeling that I’d rather have a really bad week and suck it up, instead of come back twice, and having two anesthetics, and double the fees.  She said she felt confident that I’d work it out, cos that’s the kind of person I am.

I love this lady.  She is blunt. She is honest. She gives me choices.  And she tells it like it is.

The surgery is relatively minor. If people have another adult with them at home, they often have it done as a day procedure.  She is keeping me in overnight because she’s doing both arms, and I don’t have anyone at home to care for me.  Just in case.

But the main takeaway here is that this could have been prevented. I have had pins and needles and numbness in my hands (and feet!) for at least two years now. Maybe more.  I told my rheumatologist this many times. I told my neurologist, many times.  Both of them just ignored it.  No one examined my hands.  My rheumatologist didn’t notice the muscle wastage, or check my grip strength, or hand dexterity.

This could have been prevented.  So make sure your rheumatologist is giving you a physical examination every appointment. And if you have pins and needles or numbness, don’t let them ignore it!  If detected early, its reversible.  Left too long, the damage is permanent.

This surgery will not give me full function back.  My surgeon doesn’t believe that’s possible now. And she’s angry, because if she’d seen me sooner, she could have restored full function.

I considered many times whether I should get another neurologist’s opinion.  But I didn’t.  I see so many damn specialists about so many things, it just felt too hard.  And I wanted to believe the nerve conduction test.  I just accepted the numbness and pain because my neurologist said there was nothing that could be done.

I didn’t know this was nerve damage. I thought it was arthritis damage.  Had it been detected earlier, the treatment would have been physiotherapy and I wouldn’t be having surgery.  And I wouldn’t be paying out about $3K.

So that holiday that I’ve been saving for with my kids?  Yeah, once again I am using that money on a surgical procedure instead.

But such is life.  Post surgery, and some physiotherapy, I should have a lot more hand function.  And a lot less broken crockery.

6 COMMENTS

  1. And I thought he just like holding my hands? I am a great looking guy, at least that is what I tell myself when no one is listening. 🙂

    pssst: (RABlog Week will be back in September)

    • LOL Rick, who wouldn’t want to hold your hands? I’m glad you have a rheumy who’s doing his job properly! (for whatever reason…haha). Looking forward to RABlog week 🙂

  2. I’ve just had an MRI of my neck (I had surgery there previously) because of some of the same symptoms you’re describing in addition to falling and some other things. My I haven’t seen my Neuro yet but I got the paper copy of my results in the mail. Three more bad cervical disks in just 4 years. I’m scared now, really scared. I lose complete feeling in my whole arm at times and like you drop things.

    I hope your surgery goes well, I’m glad you have such a straightforward surgeon looking out for the whole you. She seems to understand the financial pressures make us more ill.

    • Hi T, I’m sorry for my slow response, and sorry that you’re going through similar things. I often have falls as well. Do you have balance problems too? I hope your neurologist is a good one – how do we ever know? But having your neck disks degenerate so quickly IS scary, and your disease doesn’t sound like it’s well controlled. Don’t let them tell you that the numbness is nothing, it most certainly is not. All the best with your appointment – I hope its soon and that you get some good answers. And a treatment plan. And yes, my surgeon is a great person, as well as a great surgeon. She treats patients like people and takes their whole circumstances into account. I wish there were more doctors like her. Best to you xx

      • I understand, sometimes I can’t even pick up my iPad much less sit in front of a computer. I hadn’t realized I was having balance problems (I feel like I should have in hindsight) until my first appoint with this new Neuro. I failed on balance horrible and didn’t expect too. I was also much weaker then I realized.

        I had numbness in my hand and foot before my original cervical spine surgery in addition to something my original Neuro called drop foot. I needed the last surgery stat to save nerve function. That’s why your post struck close to home for me.

        Now I feel like someone reset the dominos and between this and chronic abdominal adhesions that started after a simple ovary removal. That surgery was expected to last 8 years but I’m symptomatic after 4.

        You are right my disease recently went through a period of months completely out of control because our lovely insurance system here decided after 3 years to stop covering the Biologic I was doing well on an switch me to to enbrel. It didn’t work at all and my RA immediately began attacking old and new joints. I’m now struggling with my jaw which never hurt before even with a night guard.

        My Rhuem has suggested PT and occupational therapy but I’m at the mercy of my cardiologist to release me for any of that since my bp has been out of control with chest pains. The stress test was clear but he says we shouldn’t rely just on that, sigh.

        We live at the doctors when we’re not home it seems.

        • T I am in the same boat with the high blood pressure too! And my cardiologist is also the only one who is taking it seriously enough. I get chest pains daily, usually only mild, but certainly there. My stress test was Ok too, but like yours, my cardiologist is being cautious. That’s a good thing I think. It also leaves all biologicals off the table, at least for now. As each one I have taken has caused high BP. And now, even on medication, my BP is still too high. They can’t get it to come down. We have lots in common.

          I will never understand how insurance companies can be in charge of prescibing decisions! It makes me furious. I’m so sorry T, which biological were you switched from? It makes NO sense! Surely now the treatments you need because your disease became completely out of control far exceed the cost of the biological that was keeping you stable. It’s insane. And such shortsighted, false economy. Not to mention the incredibly pain it has caused you.

          Did your cervical surgery help with the numbness? I was so ignorant to nerve compression and nerve pain. And the consequences of leaving it untreated. I’m learning though. Like you, the hard way :(. Hang in there T.

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