12 ~ Limited edition ~

Walk in to my first “official” appointment with a Neurologist. Or rather a so called one. Later I came to hear of others who also had bad experiences with this dr.

Other’s opinions may differ. My personal experiences taught me not to consult with a neurologist who is too young if you’re having complicated symptoms.

Trust me, besides having less basic knowledge than google has, they have NO experience. Not that I’m a googler, most knowledge is gained from the 8 support groups I’m in due to my diseases.

He took down my history – presentation of symptoms, then ordered me to go for a brain & C-Spine MRI scan.

The MRI scans were necessary to rule out any other major issues. Once the results went through, his receptionist called to say I should come the next day to discuss the results without wasting time. Feeling uneasy, wondering what could be so serious that time should not be wasted? I go.

After all, nothing serious!!

He’s report was inconclusive. I’m an Atypical, rare case.. Never seen the nature of a case like mine’s previously. My Neuropathic pain cannot be confirmed.

MRI scans are clear.

A common mistake found which is important to take note: A test that appears clear does NOT mean you’re clear of having an illness.. It means other major etiologies (causes) to an illness are ruled out.

Some drs look at the tests & if its clear? Finish! End of the story. There’s nothing wrong with you! Go live a normal life! Well, no one asks to live the life of an invalid!

“It’s in my mind” let alone a conversion disorder (due to his lack of knowledge). Astounding to point out he stated all of this without even performing a Nerve Conduction Study (NCS).

That was the main problem with the first Dr. After my blood tests repeatedly came back negative.. “everything is fine, go back & start living a normal life”. If seeing is believing..

What do we as invisible illness patients do to show the reality of what we’re dealing with?

Sorry for delving into a bit of technicalities.. Its necessary to elaborate here because drs & patients are following as well.

It is a misconception that having a normal Nerve Conduction Study result clears a person from having Peripheral Neuropathy. A normal NCS proves no Large Fiber nerve damage whereas a punch / skin biopsy proves Small Fiber nerve damage.

7 neurologists in Gauteng got this wrong. When my NCS came back “normal” they said’

“You have no Peripheral Neuropathy”

What should be said is:

“You have no Large Fiber nerve damage”

In other countries it is commonly known a punch biopsy proves Small Fiber damage. When I politely questioned a Neurologist regarding the punch biopsy she looked at me shocked, did not like the question & bluntly said: “we do not do it”. Without providing a reason.

Why? I do not know & would still like to know.

How then can you still accuse a patients pain as being in their mind when you are not doing the job correctly? Not performing the relevant tests required?

This neurologist then prescribed a med called Cymgen / Cymbalta. I came home & threw the prescription paper aside. Don’t give me a medicine if you don’t have any clue what’s wrong.

Maxalt was also prescribed for migraines which I took a while but strangely noticed, it caused rebound migraines.

Co-incidence that i came across an email sent from migraine buddy – awesome migraine tracker application with tips etc.. Explaining that most migraine medications work in such a way, rebound migraines are experienced.

However, I stopped maxalt because once the angina issue came about.. it intensified the angina. At that stage I did not know my heart was turning faulty lol.

Still new to everything, I returned home so confused unaware this is the norm. We, rare patients undergo a vicious cycle consisting of months & years consisting of countless Dr’s & tests to recieve an accurate diagnosis.

I guess that’s the reason we’re called patients? Because we wait so long to find out what’s wrong 😉

After joining support groups, interacting with others on social media networks I learnt how things work / suppose to work.

A lesson learnt the hard way.

Don’t give up the swim of this ocean

Don’t give up fighting

As much as it feels like the easiest option at times

Ease will surprise when least expected

If ones conviction remains fixed.

But remember it’s also perfectly normal & okay to break down, to cry, to become angry, to fall apart..

---

---

I use a battery theory for explanation purposes because most relate to technology.. When having a conversation I refer to my energy level as so much percentage % of battery life estimated / remaining.

Some relate to a fuel tank. Like this there are many examples set forth for normal people to understand what’s it like for us to do activities.

Each activity has to be counted & planned wisely.

After 12 months of having not much productivity in life due to pain. Many blessings were sent my way in the form of these 2 meds below 😁😁

Would you trust who makes them?

An lady who is truly gifted.

Someone who’s loss of sight has not deterred her from chasing behind her aspirations..

Stay reading for her story to be featured 😉

I recieved a tremendous amount of quality in life back. All praise & thanks to the Almighty 😄

These are my 2 pain saviors. Some days I feel no pain, some days are minimal. It does not prevent flares from occurring. Flares are uncontrollable. But I have less intense pay back times & NO side effects, many complain of that problem.

Courage takes many forms.

There is physical courage, there is moral courage.

Then there is a higher type of courage –

The courage to brave pain, to live with it, to smile as if all is fine, to never let others know of it & still find joy in life.

To wake up in the morning with an enthusiasm for the day ahead.

What I thought to be the end of Neurologist number 1 turned out to be the onset of a high tide ..

A tide that crashed with havoc

A tide that challenged my inner core of faith

A tide that knocked me down repeatedly

And a tide that undoubtedly built & strengthened me