Good news… bad news (?)


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So…  let me say first, a diagnostic clinician, I am not.

The Neurologist confirmed, yesterday, I do not have MS, as was, so confidently, self-diagnosed by me, on Monday.


However, she did confirm that I do have Neuropathy.

The $64,000 question (or I guess the two questions, worth $128,000) are, what type of Neuropathy do I have, and what the fuck is causing it?

During my two-hour (Yes, you heard me, 2 HOUR!) very thorough, consultation…  I was poked, prodded, stuck with pins, hit with a rubber hammer, pushed, pulled, pinched and subjected to both hot and cold.  I was also asked a barrage of questions, until my head was spinning and I was not exactly sure which way was up.

The young, enthusiastic, female, Neurologist was lovely and warm, but at the same time, direct and meticulous.  She identified a few anomalies with me; for example, the fact that when she pricked my feet with a pin, I did not flinch!  Yeah, that was a bit alarming!  Also, I did not feel the ice-cold tuning fork, against my skin, until it was almost up to my knee.  Nor did I feel it’s vibration, until it had been pressed into the skin above my ankle.

Very odd indeed, to see a pin stuck in your foot, and not feel the “prick!”

As you’ll see if you “click,” the link above there are several different types of Neuropathy and they are:  Peripheral, Proximal, Autonomic, and Mononeuropathy. 

I have already had an EMG which tested for peripheral neuropathy and those results came back “normal.”  This means only that there was no measurable damage to my peripheral nerves or nerve coverings.  The Neurologist indicated, I may have to have that test repeated, just to confirm.

So…  “IF” it’s not peripheral neuropathy, which we’re assuming at this point, it is not, (which is unfortunate as peripheral neuropathy is the most common and perhaps the most innocuous)… that leaves us with proximal, autonomic or mononeuropathy.  

Note to self… Note to self… Note to self… the GOOD news is it’s not MS.

I guess the BAD news is, Neuropathy, not any of them, are related, in any way,  shape, or form, to PMR, GCA, or to the ingestion of high dose corticosteroids!  Bummer!

Soooooooo, THANK YOU God, Karma, and the Universe…  you’ve blessed me with yet another obscure, off-beat, exotic disease!

COOL!  How lucky am I, huh?

Now….  Seriously, I’m not complaining, because I know many of you are struggling with multiple, unrelated and disabling illnesses; and who the hell do I think I am to be spared the discomfort and indignity of having multiple medical problems?

NOBODY, that’s who!

So today was filled with an eye exam (that showed a teeny, tiny bit of “clouding,” that may or may not be the beginnings of cataracts and a trip to Hove Polyclinic, for an inordinate amount of blood tests.

And I mean “BLOOD tests!

The Phlebotomist took like 9 vials of blood (some of which she did not have a “clue” and had to ask someone in Pathology about), including one which was related to a genetic test for “hereditary amyloidoses”  (because both my brothers had neuropathy!)

It should be noted, that I have always attributed both of my brother’s neuropathy’s to an above average consumption of “alcohol,” and the fact that my oldest brother was subjected to Agent Orange, for 18 months, in Vietnam!  … so I never considered a “hereditary,” connection.  Doctor House!!!!  Where are you when I need you?

Where does that leave us?

I have no idea.  The genetic testing will take a few months to complete…  the other blood tests will be complete in a week to 10 days…   I will receive a letter advising me of my next Neurologist appointment, which will be in about two months…

Until then…

I’m  thinking about a solo trip to Jamaica!

I think I need sun, sea, sand, solitude and a lot of reggae!


  1. Wow, you may end up in multiple medical journals at this rate! Jamaica sounds like the perfect answer to this newest medical insult! Not much I can offer except to say just keep moving forward and fill your days with joy whenever possible! On the bad days just reflect on all the love your have surrounding you❤️

    Liked by 1 person

    1. Hello my friend!!! I hope you are both enjoying Italy!!!! Yes…. can you F’ing believe it???? WTF??? I am aware of the love that surrounds me.. and that doesn in fact give me comfort!!!! XXXXXXXXX


  2. Get your Fanny to Jamaica and eat, drink and dance like u never had before!!! Sun and ocean is God’s way of saying “I got you”! I just had 10 injections to my back and headed to the beach and feel FABULOUS!


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