Active participant in medical care or hypochondriac?

I wrote in my last post about my increasing muscle weakness.

I’m afraid that was just the beginning.  It’s continued – sometimes worse than others, but almost always present since then.  It’s primarily in my quads and upper arms.  Going up stairs (even the half-flight in my house) is becoming difficult – especially if I’m carrying something, squatting to pick up trash off my daughter’s floor while helping her clean her room, washing my hair, etc.

Even just sitting here on the couch it feels like I just completed a strenuous hour-long upper- and lower-body workout (which I most assuredly did not).  My upper arms and quads have that shaky/weak feeling that I’ve experienced after a good, hard workout.  Only I’m just hanging out in the house on the second snow day of the week.  Doing nothing that would warrant such a feeling.

I called the neurologist on Monday afternoon and left a message with her nurse (she had instructed me to call if anything was getting worse before my next appointment, which was 2 months from then).  I described what was going on and asked if she wanted to schedule me in sooner, have any other blood tests done, or think about a muscle biopsy (which she’d mentioned as a possibility when I saw her, but felt like it wasn’t quite yet needed until other, less-invasive, things were done – the bloodwork and cervical spine MRI she ordered).  Since I left the message we’ve had over 12 inches of snow and many, many things shut down, so I’m not surprised I haven’t heard back yet.  Hopefully I will soon, though.

The muscle weakness is definitely happening often enough that I know it’s real.  It’s happening in varied enough circumstances that it’s not one thing I can point to that’s causing it. It appears to be increasing in both frequency and intensity (six months ago I was making it through an hour and 15 minutes of stretch/strength/contemporary dance class with the high school girls at the dance studio…now I have problems walking up a half-flight of stairs!).  So naturally I’ve been researching to see what possibly could be going on.

Myositis pretty much nails my symptoms in its description.  It’s autoimmune.  It can occur along with Sjogren’s.  It would explain the general muscle weakness that the neurologist found in me.  It may even be the cause of the fine motor skill loss (which was the reason I was sent to the neurologist in the first place) that’s been going on as it can effect the muscles that work the hands and fingers as well.

But I’m just always hesitant to broach a diagnosis with a doctor.  I don’t want to be seen as a hypochondriac, certainly!  And I don’t want to come off as the person that’s coming in and trying to tell them how to do their job.  But it is my body.  I do live with it constantly.  And in the last year, especially, I’ve become much more focused on monitoring what’s going on and trying to pay close attention to various symptoms and how to most accurately describe them.  I’ve seen over the last few years that the better I’m able to communicate exactly what’s going on with me, the less round-about the diagnosis process may be (for example when at first doctors were thinking my fine-motor skill loss was numbness and tingling rather than what it actually feels like).  And the better I’m able to describe ALL the symptoms that are going on, the more likely someone is to connect the dots (such as connecting fatigue, dry eyes and dry mouth into Sjogren’s disease…which took 5 years for a doctor to connect all those dots because I never though to bring them all up to the same doctor…they seemed so disconnected).

I don’t want doctors to label me as needy, pushy, a hypochondriac or a problem patient (remember that Seinfeld episode where Elaine was labeled as a bad patient and her record kept following her from doctor to doctor…very funny TV, not so funny to fear in your real life!).

I do, however, want to give them any and all information that might help things move along for me as quickly as possible.

After all, it’s been 5 years since I first brought up autoimmune related symptoms to a doctor and I’m still not on a treatment plan that’s giving me any relief…and I just keep adding on additional symptoms and additional problems to look into.

I need to find the confidence and strength to speak up while doing it in a way that is productive and conducive to my doctors working with me.

2 thoughts on “Active participant in medical care or hypochondriac?

  1. I am in the same boat. I have Psoratic Arthritis with secondary sjogren’s and raynauld’s and something else is happening that I am trying to get answers about. I too just had an EMG/NCV and they found a little bit of neuropathy, I have weakness and severe fatigue. The main problem for me right now is my esophagus has just upped and stopped working. I’ve had problems with my stomach and esophagus for the past three years but its getting very serious, which has me concerned about CREST/Scleroderma.

    Three years ago I came to my Rheumatologist asking about Raynauld’s because I was surprised to see my fingers turning blue. I didn’t think people with PsA got Raynauld’s, and I wasn’t sure that was what I had. She went off on me “Everyone comes in here with Raynauld’s freaking out because they think they have Scleroderma! YOU DO NOT have Scleroderma!” Uhhhh…. I was just asking about Raynauld’s. Now, three years later, with a seriously dysfunctional esophagus, I *am* concerned about it, but terrified to ask!

    Most doctors don’t take suggestions well. They are brought up in a very hierarchical system that discourages dissention from the rank and file. The best thing I can suggest to do and what I am working out how to myself is to frame your symptoms so that your doctor will come to the same question that you have. With myositis, you would have high muscle enzymes, right? Maybe ask, “So I am having a lot of problems with my muscles, have we tested my muscle enzymes to make sure its not something serious?”

    I was concerned at one point about vasculitis because I had a skin biopsy of some blisters come back as vasculitis. I got yelled at for asking about it “That’s a 1 in a million disease!!” so I asked “Well, other than the fact its rare, is there another reason why you think I wouldn’t have it?” she said “You would have high inflammatory factors in your blood, which you don’t have, but I can test it again if you want.” So she did (while rolling her eyes) – my inflammatory factors are normal so I said ok – and crossed vasculitis off the list. Sigh.

    Its NOT EASY. I hear you. Sometimes I think maintaining the relationship with your doctor can be as stressful as maintaining the relationship with your spouse. I stick with her (my rheum) because she can be very stubborn and relentless and when sh*t hits the fan, she’s an amazing advocate. She saved my life in the hospital when the hospitalist tried to kill me with steroids.

    Anyway – I am doing a 365 project over on my tumblr documenting the day-to-day of having a chronic illness. Feel free to drop by and commiserate. You are not alone is this scary place, although I know it feels that way sometimes.

    1. Yes – I do think it’s the hierarchical system that’s a big part of the problem! They see me for 20 minutes every 2 months and in the meantime have had lots of other patients to think about. I, on the other hand, have lived in my body for those 2 months since my last visit, acutely aware of all that is going on with it in an attempt to better be able to describe it the next time I go.

      It’s sort of the same fear I have of getting a second opinion – I wrote about it before, about how I’d just about gotten myself over that fear and then my imagined repercussions from it happened in an unexpected situation and delayed my seeking another opinion for my autoimmune disease for another month. I have these imagined repercussions of suggesting what I think might be going on with me and I don’t want them to become reality!

      Thanks for joining my conversation!

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