Oh… don’t worry! I don’t feel a thing. It’s like the feet, attached to my legs, aren’t really mine… it’s like, they belong to someone else.
So if I stub my toe, get a blister, or walk on a piece of broken glass, or something sharp, I imagine some poor bloke (or woman) somewhere in the world, howling, “Owwww!” And not having a clue as to why s/he is in pain and possibly bleeding!
I truly hope this is not happening, but cannot understand, for the life of me, where my sense of “feeling” physical pain (at least in my feet) as gone?
The long-awaited trip, to the Neurologist, which took place on August 21, resulted in a very thorough two-hour consultation. The Consultant’s letter, outlining that appointment and her findings, was received by me yesterday.
At first reading, the four page letter was rather unremarkable.
- PMR/GCA, blah, blah, blah…
- In March.. tingling in feet, blah, blah, blah…
- Numbness, pins & needles, electrical shock feeling, blah, blah, blah…
- Both brothers developed neuropathy… (Hmmm?)
- No other family history of the condition, blah, blah, blah…
- Reflexes all present, but reduced; apart from absent left bicep jerk…
- Hint of bilateral hip flexion weakness, blah, blah, bah…
Okay get to the good stuff!
- Ooooooo, “patchy hyperaesthesia to pin prick in the feet and shins…”
- “Cold sensation reduced from below the knee down into feet, bilaterally…”
- “Vibration sense lost below ankles.”
So basically, I’m “DEAD” from the knees down! Well… at least there’s nothing really important down there, I guess.
Glass looking half full! Cool.
The Consultant’s “impression” is that I possibly have “…small fibre neuropathy, with possible “autonomic involvement.”
Ummmm, wait a minute?
What does “autonomic involvement” mean? Ahhh, “The autonomic nervous system is a control system that acts largely unconsciously and regulates bodily functions such as the heart rate, digestion, respiratory rate, urination/bowel control, and sexual arousal.”
Glass now looking, less than half full.
Shit, and yes, I mean that perhaps quite literally!
Next steps? Await an appoinment for an MRI, wait for all blood work to come back, wait longer for Bence-Jones protien and TTR Genetics tests to come back. Meet with head consultant Dr Basil Ridha on November 5th and potentally be referred to the National Hospital for Neurology and Neurosurgery, in London.
Oh… and of course worry.
Hmmmmm? Where did I put that number for Dignitas
rantings of a madwoman 
I’m so sorry you are going through this! I developed small fiber and autonomic neuropathy 2 years before my GCA. It is likely due to my Sjogren’s Syndrome autoimmune disease My small fiber neuropathy was proven through skin punch biopsies. A year ago, I went through all the automatic testing:. TTT, sweat tests, and more. It showed that I have Postural Orththostatic Tachycardia Syndrome and I don’t tolerate standing, barely can sit. Tests also showed that I don’t sweat from my hips down while I sweat profusely around my head and neck. From age 40 to now, 51, I have a long list of diagnoses, including adult onset muscular dystrophy, inherited through my mother.
It’s been brutal, to say the least. Since finding your writings, this past spring, I have found it helps me to see you express your feelings and know that it is a normal part of very abnormal diseases. I wish that no one had to experience any of this! Yet, if we have to, at least let us lean upon one another as we try to stumble through each day!
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Ohhhh Rebecca! Look at me Boo Hoo’ing like a big baby! I don’t even know what I’m dealing with yet, and I’m throwing myself a PITY PARTY! Thank you for your comment and for reminding me that there are lots of other people in my same (or worse) situation! Wow! Your plate is definitely full! I cannot tell you how pleased I am that my writings have somehow helped you. Wow! That is the best feeling in the whole world. Thank you!
Well rest assured your comment today, has helped me!!!!
…and yes sister, lean on me as I will lean on you!
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This autoimmune crap is getting on my nerves—literally— and apparently many others as well. As I sit at my work computer, struggling with the odd “tinglings,” “sensations,” and “aches,” I commiserate with you Melissa. And, simultaneously feel fortunate that I am not worse, as so many are— including you. I hope you find answers.
All the best,
Claire
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Ahhhhh, thanks Claire! Yes, I have to remind myself that there are many others who are far worse off than me and although a small, pity party is okay every once in awhile… there is no good to come from staying for the whole rave! Have a dance and get out.. that’s what I say! I wish you well and I loved your pun… “This autoimmune crap is getting on my nerves, literally!” Hahahahahahaha me too.
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Oh mamici1, I really feel for you. All these different ailments that keep popping up and you’re still a glass half full! Love your blogs ( language very similar to mine – and growing old disgracefully due to pmr). I call pmr my pita illness (pain in the arse)! My toes feel numb , almost like they don’t belong to you – will mention it at next appt. Hope I don’t get more bloody tablets to take. Keep on ranting!! Val x
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Thank Val!!!! Sorry to hear about your toes! YES, mention it!!!! I love your “growing old disgracefully!” Perfect! Yeah sometimes that glass has a freakin mind of it own.. and it feels like one of those “magic” drinking cups where the liquid disappears into the cup without a trace!!!! Thank you for your support!
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Oh Melissa. Didn’t realise you were coping or trying to cope with loads of other ailments. Feel for you. Sending a hug. X
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Thank you!!!! What’s that saying? When it rains… it pours! And hey, what would I rant about if I didn’t keep hitting roadblocks?
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Hi Girlfriend, wish I had that magic wand we hear about, but doesn’t seem to be around lately! Sending hugs, have a relaxing trip, enjoy what and when you can, ❤️
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