mama whose curiosity knows no bounds

Posts tagged ‘double vision’

Long, winding road – my lupus journey #6

I saw the rheumatologist, who was in the same building a few weeks later.  She wasn’t nice to me.  Just by looking, she told me, “you have osteoarthritis here and here (pointing knee and elbow and fingers).  Then she touched a few places and immediately told me “you have fibromyalgia”.  That’s new.  I have heard of it, but I never thought of it.  She suggested to take a Rx NSAID to relieve pain. And ordered a bunch of blood tests.

At the next appointment, she reviewed the test results and told me, “well, a thing for lupus is a bit high, but not high enough to call it lupus.  Nothing extraordinary but Graves’ disease is still there.”  According to her, TSI (Graves’ disease’s antibody) causes double vision and fibromyalgia causes extreme fatigue and pain.  I told her it’s my joints that hurts, but she readily dismissed as that’s muscle pain.  I was simply incapable of telling them apart.  So she suggested Savella, an SNRI that is approved for fibromyalgia pain.

However, what annoyed me really was not just her dismissive attitude. During each appointment, she told me, “you’re in good shape.  So you may have fibromyalgia.” “you’re in such a good shape”, etc.  She said “you’re in a good shape” at least 10 times every appointment. I was not in a good shape.  I was borderline overweight. But I could tell that her BMI was greater than mine.  I felt as though she was so depressed by her weight issue and she throws at “a good shape” attack to any female patients less overweight than she was.

But that was as good as it gets as she was the nearest rheumatologist and about 1 hour drive.  To see everyone else, I had to drive at least two hours.  There was no one locally.  So I kept taking Savella, but I didn’t have the trust in her so I didn’t see much impact.  I still felt extreme fatigue and joint pain was not any better.

Meanwhile, as recommended by the second neurologist, I saw an ophthalmologist.  Apparently she had no idea but confirmed double vision and believed in the neurologist’s explanation.  So she prescribed me prednisone, 20 mg a day.


I was like a re-born.  Every bit of weight that dragged me down was lifted.  I saw single! I had so much energy without joint pain!!! I even did some gardening, making my hubby really surprised.

But my PCP didn’t like that idea.  Despite my insisting that something inflammatory must be going on because prednisone worked so great, his response was, “With prednisone, anyone feels good. You should stop prednisone because of side effects.  you should try more alternative approach like wax bath for joint pain”  He also prescribed Tramadol, warning that I should use it sparingly or I will be addicted.  Tramadol WAS helpful.  But nothing was like prednisone.

On the other hand, my ophthalmologist were totally fine with it.  For her, 20 mg prednisone was “very low” (I learned later it was NOT), and this was done for my comfort.

I was utterly confused.  I didn’t know if I should keep taking prednisone or not.  I had no one to consult.  Eventually, I chose NOT to take prednisone and keep taking tramadol.  I’m not sure which was more disappointed, my husband or myself. I stopped Savella because of stomach side effects and mistrust on the rheumatologist.

Then I heard a good news.  The PCP told me that the health system I use hired a rheumatologist! I immediately asked for referral.  Now I no longer had to listen to her “you’re in good shape” attacks!  This was early 2010.  Four year had passed.

To be continued.



Long, winding road – my lupus journey #2

So my fatigue was not due to allergy.  Around the same time, I started to notice various symptoms.  Like:

  • drooping of my head/neck – in late afternoon, when I drive to pick up K and S from daycare, I noticed that I was unable to hold my head up.  I thought something might be wrong but again dismissed as being busy.
  • double vision – this scared me. I could see things far far away was one, but objects mid-to-short distance, say, 30 feet, looked double.
  • attention deficit – this was not new to me.  I always had scattered mind. By that time, I was tested for it, and result was “not ADHD, but not normal”.  Counselor diagnosed me with depression to explain. But by that time, it was getting worse.

Because my web search associated double-vision with scary stuff like brain tumor, I went to see my nurse practitioner.

She told me, “you know what? it is some thing called “old age eyes”.  Get a pair of reading glasses from anywhere, maybe Wal-mart and you’ll see it will be all gone.”  I also told her my extreme fatigue.  Since she knew K was autistic and could be very stressful, she told me that was typical symptom of depression and subscribed Wellbutrin for me.  Let me be clear, she was a wonderful, compassionate NP.  I really liked her.  But I couldn’t help but feel being dismissed as exaggeration.

Reading glasses of course didn’t help, although reading a very small letter was slightly better with it.  Of course, that’s the purpose of reading glasses!  But double vision continued.  So was fatigue.  I visited again and explained my symptoms.  She now realized it might be something serious – more specifically, multiple sclerosis, and ordered MRI and some blood tests.  Both turned out to be negative.  Including ANA, which is almost always positive for lupus patient.  This will haunt me for a long time.  She increased the dose of Wellbutrin XR to 450 mg, which was maximum.  It helped in that I became more alert and agitated, somewhat covering my fatigue and lack of concentration.

With frustration and the difficulty getting to see her – if you are sick and have to wait for 2-3 weeks, you will be frustrated! – I switched to see an MD.

To be continued….


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