After meeting me once for a brief 20-minute appointment, this is the neurologist's note/message from earlier this year.
20 vials of blood for tests I've had numerous times.
No MRI.
No CT.
Nothing that would indicate I have Parkinson's; I have zero symptoms. In fact, it was discussed by my neurologist in South Carolina, and she, without a doubt, stated I DO NOT have Parkinson's. Also, keep in mind this was in a note to me and never discussed in person.
Dependent axonal neuropathy is another way of saying idiopathic neuropathy.
Idiopathic neuropathy is when nerve damage interferes with the functioning of the peripheral nervous system. When the cause can't be determined, it's called idiopathic neuropathy or we-don't-have-a-clue-of-what-is-going-on with-your-nerves-so-good-luck-with-that.
Neurologist’s go-to for this type of neuropathy is *drumroll*
Weight Loss!
My last neurologist, the genius who told me I don't have nerve damage even though I have physical proof, i.e., failed nerve tests and biopsy reports, is one of those go-to kinds of physicians.
Let me tell you why this is easier said than done.
Anyone with neuropathy or an autoimmune disease will tell you that exercise is challenging. That challenge steepens when on medication such as Lyrica. One of the primary side effects is weight gain. Not everyone experiences this, but the stats are high.
I gained 20lbs when I was on Lyrica.
I was on the highest dose and wasn't receiving any relief. My care team suggested a second medication, which I wasn't thrilled about. Also, Cymbalta was on the table. Now, this was before I was diagnosed with Pernicious anemia.
Pernicious anemia is a relatively rare autoimmune disorder that causes diminishment in dietary vitamin B12 (cobalamin) absorption, resulting in B12 deficiency and subsequent megaloblastic anemia.
With all that, neurologists continue to say, "Weight loss always helps or cures neuropathy."
I am well aware of this concept; however, when I flare up, I can hardly walk, let alone swing a kettlebell.
What causes flare-ups?
Stress. Emotional upheaval. Overstimulated environments.
Then don't be stressed.
Cool. I will let my grief know that excellent suggestion.
When physicians ask about my food intake, they are pleasantly surprised.
When you have an anaphylactic soy allergy, you tend to learn how to make everything from scratch and grow herbs, mushrooms, and vegetables at home for cross-contamination purposes.
Someone on Facebook recently questioned me about weight loss and their program, which would help my neuropathy. She was aware of my eating disorder history and my soy allergy but continued to push her weight loss agenda. She was promptly removed from my social media life after not respecting my words of no thank you, that will kill me; this is not for me.
Where am I going with this entire rant?
I implore you to please be mindful when approaching the topic of weight loss, especially when it comes to those with health challenges.
I promise you I am doing all I can to remain as functional as possible, and the only experts when it comes to this are the people living with chronic pain and illnesses, with neuropathy, with autoimmune conditions; we are overwhelmed enough with our daily trials and errors. Stacking on weight loss pressure isn't helpful. Not from physicians and certainly not from social media.
Most of my physicians couldn't even agree on what blood tests I should have, let alone exercise. One said don't over-exercise. It will cause flare-ups. The other said it would help my spinal nerve pain.
As an herbalist and integrative health individual, I am well aware of a nourishing lifestyle; however, it's not a one-size-fits-all scenario. It's not a diet scenario. It's not an MLM scenario. It's not a gym membership scenario.
It's a compassionate scenario.
In a grief/child of a parent who died from cancer group, a woman shared a story with us. Her mom was diagnosed with terminal cancer and lost quite a bit of weight, and a person commented on how skinny and fabulous she looked. The mom told the person never to say such things if you don't know the backstory.
My dad hated the weight loss; adding another notch to his belt saddened him.
As my husband says, seek to understand.
I lost my Lyrica weight but gained it back.
It's called grief.
And here's the thing: even when I did lose it, my neuropathy pain and numbness didn't magically cease to exist.
I don't walk on my treadmill, lift weights, or practice yoga for any reason other than to help my nervous system. I've studied the Vagus Nerve for over two years, some on my own, some with classes.
There is more to neuropathy and autoimmune than weight loss.
Much more.
As a society, we are obsessed with weight, and people with their opinions amplify the toxicity of social media. This includes the medical community.
I've seen my fair share of misinformation videos, which terrifies me.
Suppose I get the ick from a physician like I did earlier this year with the neurologist and gastroenterologist. In that case, I move on to the next, and those new appointments are happening in January.
I've started over before, and I will do it again and again. I had an incredible team in South Carolina, and I know I will find one here. It just takes time.
I continue to learn and try something new; if it doesn't work, I try something else. I expanded my education about the vagus nerve, somatic therapy, restorative yoga, herbs, mushrooms, and foods for neuropathic pain.
This education is for me.
Not for a business, not for consultations, which is different for me; I have always had a plan for the next chapter, but that added stress isn't healthy. Right now, I don't need a next.
I need to be right here in the present.
I love answering questions and helping those who want to try something different. It doesn't always work for them, and that's okay; hell, it doesn't always work for me. But I have learned so much over these past few years and will continue to do so.
On that note, thank you for attending my TED Talk: On My Last Nerve.