Update on my (Robert’s) Health

You’ll want to read this if you have rheumatoid arthritis (R.A.). You also may want to share this with any of your friends or relatives who have R.A.

For starters, I simply do not know how I’m doing!

Let me give you a brief synopsis of my past experience with R.A.

It all began on Thanksgiving Day, 2007. (Yes, in just one day.) We had a great Thanksgiving dinner. My family always likes to go to a movie after dinner, so I went to start my car. Couldn’t even lift my hand to put the key in the ignition. I was soon diagnosed with R.A., and began taking methotrexate, which worked wonderfully.

Fast forward to 2018, when I needed to undergo a quite invasive surgery. The surgeon asked me to go off all meds, including the methotrexate, for 6 weeks prior to the surgery, and six weeks after.

Lo-and-behold, the R.A. had vanished! Gone! I thought. My rheumatologist and I decided to discontinue the methotrexate, and after awhile he dismissed me. Told me to call him in the event the R.A if I have a problem.

Bad, bad, bad mistake.

So now we get to today.

Two Thursdays ago I walked into my first meeting with a rheumatologist because of a long list of symptoms that specialists couldn’t fathom. None of the specialists had ever mentioned R.A. Not once. Finally, after months, my wife and I self-diagnosed the culprit as R.A.  The rheumatologist agreed. Hugely progressive R.A. By Friday night I was walking with a cane. By Sunday night I needed a walker. Now I’m dependent on a wheelchair. All in less than three weeks.

Went to the JPS Hospital emergency room. The hospital infused me with a high dose of steroids (1000 mg of prednisone) three days in a row which was supposed to stop the progression in its tracks. It did nothing.

They couldn’t believe R.A. could work that quickly, so they conducted a full-body MRI, a cat-scan of my head, a Lumbar puncture (spinal tap) and so many blood tests that I couldn’t possibly keep count. Nothing. They’re completely baffled.

In the meantime I’m sticking with my belief that it’s R.A. because my rheumatoid factor is 50. (About 4 times what it should be.) Instead of attacking my joints, it is attacking my organs – my skin (an organ), heavy neuropathy, numbness in feet and lower legs (my legs have turned to jello and I have no balance), and the numbness has begun moving into my hands. Highly elevated blood pressure, highly elevated liver enzyme levels, the list goes on and on.

And oh, did I mention the pain?

Now we’re waiting for the insurance company to hopefully approve treatment with a drug called Rituxan. (Chemotherapy).

In the meantime I’m home from the hospital but getting progressively worse. I’m taking as many pain meds as they’ll prescribe.

All in less than three weeks!

I’ll keep you updated, and please wish me good luck.

Robert


7 thoughts on “Update on my (Robert’s) Health”

    • Yes. That’s why they did the spinal tap, to look for Guillain-Barre and 7 other possibilities. Everything normal for my age.

      Reply
  1. My thoughts are with you Robert. On reading this I thought ‘autoimmune disorder’ but I’m by no means certain of this, just something that popped into my mind. If it is autoimmune, then this could be some sort of reaction to something, like allergies. It’s just something worth thinking about.

    Anyway, I do hope you get to the bottom of this and quickly!

    Reply

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