facing my primary – scary – diagnosis.

I hadn’t planned to write anymore health related posts for the next few weeks. In fact, I have a list of several other topics I want to write about – and I will – but I have been confronted with an ugly health truth that I just can’t avoid tonight and researching it while I wait to contact my PCP in the morning has consumed my thoughts and evening.

Since that is where my head and heart are at the moment, it is the truth I am going to share here – even if it is not pretty.

The Diagnosis I’ve Been Hiding From

I wrote a post some months ago about multiple sclerosis. Specifically about my needing to begin seeing neurology for MS – but then all hell broke loose with my foot. And I acquired my PICC line. And several new doctors. And home health.

And I just haven’t made it yet.

And honestly?

I think I’ve been terrified to go.

Because I know what this means.

So I pushed it to the back of my mind.

scary stuff.


An Explosion Of Symptoms

What I hadn’t been counting on was what would happen when my prednisone was reduced: the steroids were holding some of the neurological symptoms at bay and the floodgates opened.

Though I have been experiencing these symptoms all along, they have become suddenly much more significant.

  • My inflammation markers in my labs more than doubled in a week.
  • My blood sugar has gone up significantly – while my appetite and ability to tolerate many foods has gone markedly down.
  • My vision is incredibly blurry – and I have some mild double vision at times.
  • I have had pain upon moving my eyes – particularly my right eye – intermittently for a few months – but it has gotten much worse. I am also having pain in the muscular area around my right eye that is sharp and severe.
  • I am having balance issues that have suddenly become much more frequent.
  • My body pain has been just unreal.
  • I’ve noticed that my bouts of fatigue are coming on much more suddenly and frequently.
  • I find myself sometimes “losing words” and having difficulty spelling words I’ve known since I was a child at times.
  • I am dealing with terrible GI issues.
  • I am literally waking every hour or two at night due to overheating in my sleep.

My CRPS is likely related to this as well as my dysautonomia – and, of course, they have worsened as well.

There are many other symptoms that are linked also. These are just the most notable.

So much can come along with MS, including bone issues – so it may be contributing to my osteoporosis as well as the long term prednisone therapy.

(Here is a comprehensive list of symptoms if anyone is interested: https://www.mswellnessroute.com/200-symptoms-of-multiple-sclerosis/)

A Week Of Doctors

As I wrote above, I’ll be contacting my PCP first thing in the morning to see him right away – in the hopes that he can help me get an urgent neurology appointment.

In addition to seeing him, I have several other MD appointments this week – for osteomyelitis follow up and to hopefully transition at the end of the week from IV antibiotics to oral antibiotics (fingers and toes crossed).

As many of my medical interactions have been incredibly frustrating lately, I am praying that I will find the help that I desperately need at these appointments.

Calming Myself

The sudden onset of this flare has been terrible for my anxiety, of course. I think anyone would find something this serious incredibly frightening.

So, tonight, I am doing the things I know to do – watching documentaries and doing research and reading and trying to learn the things I can do for myself now.

And praying for the best.

Join me please?

Be well, everybody. Take care of yourselves and each other.

Grace and Blessings.


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