Secret Fear

Mid-August, 2014
That's when the dizziness started.  It lasted for about six weeks at which time I received my next epidural. The dizziness has been gone ever since.


September, 2014
That's when the swallow-change began. My esophagus felt smaller, and slower. Before that, I could swallow a handful of pills with no problem.

That was the first thing I noticed; pills were harder to down. Then I began having to chew my food more thoroughly and swallow less at a time. Not a bad habit to get into. I even had to adjust how I swallow liquids.

The symptom eased up after maybe four (?) months. Or maybe I just got used to it as my new-normal. My esophagus has never felt old-normal again. I still have to eat and swallow more slowly than before, and I have to swallow a smaller amount at a time.


October, 2014
That is the first time I peed in my bed in my sleep. It happened twice, about six weeks apart.

I pet-sit overnight in clients' homes; it is my main source of personal income.

What if I pee in their beds? 

No. No. No.

For about six months I packed pee pads and towels and would have to put them on clients' beds when I had overnight jobs. Making a bed in any manner wasn't easy for me with my hand and arm disability. Thank the pee-gods, I have never peed in any other bed than my own. Knock on wood.

Did I fear ALS at that point?

No. Though it was a passing wonder from time to time.

I did fear that the peripheral neuropathy might be spreading to my autonomic functions, an understandable fear and real concern.

I haven't peed in my bed again since November, 2014.

Thankfully, of these symptoms  (if they were symptoms, which I think they were) that developed beginning mid-August, 2014, the only one I still have is the swallow-change. I should come up with a better way to state that, "swallow-change." Maybe I will.


Early, 2015
As I continued researching my symptoms and condition and how to help myself, that's when I continually began to land on the ALS forums and sites.

But if I have ALS, someone would know by now, right? 
If I have ALS, my organs would already have begun to fail, right? 
If I have ALS, steroids wouldn't work, right? 
If I have ALS, any autoimmune drugs wouldn't work, right?

This is my secret, that I get afraid that I might have ALS. I can't say it out loud. Perhaps I'm in a type of denial. I don't want to know if I might have ALS, not yet anyway. What if insurance took away my epidurals? Plus, people might think I'm exaggerating or playing the victim. I can't reveal this fear; I'm too vulnerable right now. I can't afford putting energy into what others might say and how they might judge me. Besides, my doctor would tell me if he thought I had ALS, wouldn't he? 


Spring, 2015
Exercises. I have to figure out what I can do.

Again, I landed on the ALS forums.

But, but, but ... steroids don't help ALS and it's not autoimmune. Right? 
But what about the weight loss; I just keep dropping pounds. Who loses weight on prednisone? 
Most of the time I have to make myself eat. I don't have an appetite and it's not because of depression. I just don't want to eat. Maybe it's the Plaquenil. But, I noticed the weight loss back in August, before I started Plaquenil.

Just concentrate on the exercises Carol. Regardless if you have ALS or not, your muscles are atrophying and your limbs are heavy and the fatigue can get unbearable. You need to figure out what you can do to keep your limbs working. 

You have to keep your limbs working. 
Right now, that's all that matters. 

It was terrifying.
But I would talk myself through.
I couldn't dwell on that fear.
I just couldn't.


Summer, 2015
I opened a letter from the neurologist informing me that my B6 levels are toxic, three times higher than the normal high, and to go off any B6 supplements.

But I don't take B6 supplements. 

I was bewildered.

Again I hit the internet. Again I landed on the ALS sites.

Shit. Here I am, AGAIN. 

I read and discover other folks who have B6 toxicity and don't take B6 supplements. Most, if not all, of them have ALS diagnoses.

At least I know I'm not alone and that I'm not crazy. 
And the good news is, from what I've read, B6 toxicity can mimic ALS. 
That's 'good' news? In the context, yes.
It can even cause loss of appetite.

Then I came across a heated discussion thread that had been closed to comments. The discussion was about folks who had been diagnosed with ALS who had received relief with corticosteroid treatment, and that steroid injections, as opposed to oral, were especially helpful.

They are describing me and my response to steroids and especially epidurals.
But I don't have ALS. 
I don't have ALS.
I don't have ALS.

I followed the link trail and discovered one of the folks making that claim is an elderly medical doctor who lives in the same city I live in. He was diagnosed with ALS in the 1960s, and after doing some research decided to try treating himself with prednisone. It worked. He's in his 80s now. He admits that perhaps he had an incorrect diagnosis, but he doesn't think that is the case. And there are other ALS patients who have had similar or same results with steroid treatment.

But I don't have ALS, so I am not going to contact this guy who probably isn't practicing now anyway. Besides, I am being treated with steroids. If, if, if my diagnosis were changed to ALS, insurance might not cover my steroid injections because steroids are not used to treat ALS. 

As I read more on ALS, I learned that some researchers are questioning that ALS might be autoimmune, even though current research concludes that ALS is not autoimmune.

Doc thinks my disease is autoimmune, even though my blood tests for autoimmune are negative. When I asked Doc regarding my autoimmune lab results showing that I don't have autoimmune, he responded something like, "Just because the test is negative, doesn't mean you don't have autoimmune. And because you respond well to steroids, which is an immunosuppressant, I feel sure your condition is autoimmune."

I like that. That he took into account me as a person along with the lab work. And I do believe he is correct in his assessment.

After I responded so well to the Charlotte's Web Hemp Extract therapy which I began on June 10, 2015, I searched the web on ALS and cannabis. As I read one guy's ALS story, he sounded just like me. At least his arms and hands sounded like mine. After using cannabis oil, he was able to lift his arms! Oh joy do I know that feeling! He did not use the Charlotte's Web strain; but rather, made his own oil, with help from friends because he couldn't do the physical work due to the disability in his arms and hands. I totally got it, and tears streamed down my cheeks as I read his story. They are trickling at this moment as I type this.

In my July ALS reading, I also discovered that polyradiculitis can mimic ALS. I hadn't read that prior to Summer, 2015. More "good news," at least in the context. Polyradiculitis is my current diagnosis.



Now, 2015
So, my silent and private fear about possibly having ALS has been eased.
At some point in 2015, I did share with Hubby about my fears and we had a few ALS talks.
So I did share it with someone; it wasn't totally secret.

What if my diagnosis of lumbar & cervical radiculopathy is changed?
Well, I really don't think that will happen, so I'm not even going there in my head.
And, I am starting to improve.
I keep reminding myself of the progress I've made since the end of June, 2015.
I'm doing all I can to help myself, and I'll just keep going.
I have real hope now of more improvement as I stay the course.

Most of the time, my outlook is positive and grateful.
Simultaneously, I am usually in hunker-down mode.
And, I get weary.
And depressed.
Of course.
Anyone would.

I may not get back to where I'm fully functional.
But if I can just get to the point where I need less or no epidurals, that will be another huge step.
And I have real hope now that it can happen.

The word "step" makes me smile; it indicates that I'll keep walking. ;)

Music is one of my main motivators and therapies.
Over the past couple(?) years, I've gravitated toward songs that refer to weight and heaviness.
One of my theme songs in the past year has been Carry On by Fun.
For me, the feeling of "sinking like a stone" has been a literal, physical reality.
Thankfully, that severe, earth-sucking heaviness has disappeared since I added Charlotte's Web to my regimen. It will probably take me another six months, which is two epidural cycles, without that heaviness to really believe it has evaporated. Ha! :D

I change one word in the chorus of this song: "past" to "path."
I want the "sound of my feet upon the ground" to be a present reality, not a past one.
I prefer a path in the woods, like that long one from Georgia to Maine. :)

"~ my legs are fine; after all they are mine ~"