My scariest symptom yet

I’m pretty sure everyone has a strange hair some place on them that grows longer than it should – at least I’d like to think everyone does because I don’t want to be the only weirdo out there!  Mine is on my right wrist.  It’s right in the middle of that round bone that sticks out on the outside of your wrist and every so often I’ll notice that it’s grown long again and pluck it out.  What does this have to do with may autoimmune diseases?  Nothing, really.  

Except that I can’t pluck it out any more.  And realizing that fact was the first time I noticed the neurological implications of my disease…even though I didn’t know that was what I should call it at the time.  I can’t pinch the goofy hair with enough strength to pull it out.  It slides out from between my first finger and thumb.  No matter how many times I try.

It may seem like the most trivial thing in all the world, but it has become the symbol of the part of my disease that is the absolute scariest to me.  “Makes me break down and cry because I’m so scared” type of scary.  “Keeps me up at night worried about it” type of scary.  

How in the world could the ability to not pluck out a random hair on my wrist have such an effect on me?  Because I’m losing my fine motor skills and it was the first thing I noticed.  I’m losing my strength (and I was not the world’s strongest person to begin with…in fact, I’m kind of a wuss!).  I’m losing my pincer grasp (which I only know the name of because I’ve had two children and that’s one of the things you learn when you have kids and watch them develop!).  I have to actively THINK about making my hands do things that should be automatic.  Opening things.  Washing my hair.  Holding the steering wheel.  Writing.  Typing.  Using my phone or iPad (aiming and hitting the spot I meant to hit has become a challenge).  My hands are clumsy – not being able to hold things and move like they should.

Basically my hands don’t do what my brain tells them to do.

At first it would happen after I’d “squeezed” something.  The very first time it happened was when I was spray painting picture frames for centerpieces for our wedding.  That was the summer of 2011 – not long after I’d been diagnosed.  Squeezing the spray paint can button led to not being able to move my hands correctly.  Then there were the times that I was cooking and squeezed a lemon or something.  Afterwards my hands “didn’t work right.”  Same thing when I was stirring something while cooking.  Squeezing the spray can on the bathroom cleaner also did it – and when I went to write something on the something list a few minutes later I found that I couldn’t write correctly.  I couldn’t hold the pencil correctly.  It was like my brain and my hand were completely disconnected.

Eventually I noticed that my hands (and feet and sometimes even legs) were going numb a lot.  They were falling asleep when they really shouldn’t have been – I wasn’t sitting funny or anything.  

I stopped taking the low dose (2.5mg) of prednisone after I went to KU Med about two weeks ago.  Part of stopping it was to get a realistic idea of what’s going on with me without it – to see if the other medication I’ve been on since March is doing anything or not (here’s a hint…it’s doing next to nothing!)  One of the things that I’ve noticed most prominently since stopping the prednisone is just how prevalent this neurological issue is.  It’s non-stop now.  It’s no longer happening just after I’ve squeezed or stirred or gripped something.  It’s now happening constantly.  

This scares the crap out of me.  How will I be able to do anything if my hands won’t do what my brain tells them?  How will I be able to live a normal life?  What if this becomes permanent?  What if it goes on so long that there’s nothing they can do about it?

And what’s most scary is that none of the doctors seem to pay any attention to it at all.  I told my first rheumatologist, Dr. A, about it when I first noticed it.  She didn’t even really acknowledge it – not a “that’s common” or a “that’s not really being caused by this, it could be something else going on wit you”…nothing.  Not even an acknowledgement, really, that she’d even heard that I’d said it.

I described it to my second rheumatologist, Dr. B, when I first switched over to him.  EXACT SAME REACTION – or non-reaction, actually.  Nothing.  No acknowledgement that I’d even described it, let alone that it was something I was concerned about.  At that point I was starting to wonder if I was imagining it.

I also described it to the KU med rheumatologist, Dr. C.  He did ask me a few questions about the going numb aspect, but said absolutely nothing about the feeling that my hands “don’t work right” – that they aren’t doing what my brain is telling them to do.

But after stopping the prednisone and it becoming a non-stop phenomenon that seems to be getting worse by the day, I began to do more research on it.  Apparently there is absolutely a neurological component of Sjogren’s sydrom (along with other autoimmune diseases).  

Peripheral neuropathy of Sjogren’s syndromes:
Neuropathy, which means inflammation and/or damage to the peripheral nerved, can affect patients with Sjogren’s.  Neuropathy can cause various symptoms, from ‘numbness,’ to ‘coldness;’ in its most severe form, neuropathy has been described as ‘burning,’ ‘lancinating’ or ‘feeling lie my skin is on fire.’  Neuropathy can also cause weakness and clumsiness.” (http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/)

I’m going back to KU med for my follow-up to discuss all the results of the various testing that was done last time.  And I absolutely will be bringing this up.  It’s amazingly frustrating to me that my a description that fits what I’m feeling so well is right there, associated with the disease I’m now diagnosed with (as at least one of my possibly more than one autoimmune diseases) and yet three doctors have glossed over it (or out-right ignored it) when I brought it up.  How can three doctors ignore what has become the absolute scariest thing I think I’ve ever had happen to me in my life?  

And yet, my therapist immediately noticed it as an important symptom when discussing this with her the last time I was there and urged me to research it, find out if there’s someone else out there that works in this area of the disease and to make sure to seek out whoever I need to in order to address it – including occupational therapists or neurologists as she recognized the concern for neurological symptoms.  It makes me wonder what the heck all these doctors are even doing for me anyway…

2 thoughts on “My scariest symptom yet

  1. Hi!

    Hope u are doing `reasonably well`. Really glad i found ur blog. I am 32, been diagnosed with Sjögren with possible neurological involvement this year. Everything is really scary. It somehow feels good reading blogs like yours. Makes me feel less `crazy` and inadequate.

    Keep up the writing,
    Alexandra

  2. many specialists are just ‘too busy’ – they don’t have the ‘time’ to listen to the patient’s symptoms. I had one tell me not to go through the symptoms as it would just be frustrating to him. many others have selective hearing.

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