Chronic Illness, Sjogerns Syndrome

Waves of Neuropathy

It was good to be released from my Epilepsy doctor today.  I’m glad that I didn’t get a diagnosis of Epilepsy last year, after the video EEG.  But, as he said again today, he never could prove anything with me.

waves

He talked today about how he could never prove any diagnosis with my complex case.  I definitely had migraines with aura, and the migraines almost don’t exist at this time.  The years of Topamax therapy may have stopped them, or the hysterectomy…..who knows.  But, I’m glad that they don’t happen very often.

The neurologist today said that he still thinks there could be seizure activity, but he couldn’t ever find proof of it.  The ongoing migraine auras and deja vues are still making him think that this is epilepsy-related.  Thankfully, it’s mild and doesn’t need treatment.

We discussed the Small Fiber Neuropathy diagnosis and what to do about it. Small Fiber Neuropathy is a rare type of peripheral neuropathy.  It affects the narrow nerve fibers of the peripheral nervous system.  The symptoms include: pricks, pins-and-needles, tingling/numbness, or electric shock-like brief sensations.  It’s important to treat the underlying cause to improve the outcome.  Doctors try to prevent further damage to the nerves, because there is no cure.

He suggested Neurontin, and wrote this on my chart.  This will be seen and discussed next week with my Rheumatologist.  This drug treats neuropathy, epilepsy, and chronic pain.  It sounds like something good to try, but I want to talk to the Rheumy, first.  If I don’t need it, I would be glad to avoid the rapid-weight-gain that seems to be a side effect.  It’s a horrible side effect for someone who already needs to lose 30 pounds.

At the end of the appointment the doctor said that he would no longer call my events “spells”.  Because spells typically means seizures, he will now call my events “waves”.  He said that waves is a better term for neuropathy that is intermittent.  I like that description.  My waves are the one physical problem that prevents me from functioning on a daily basis.  These “attacks” of heart-racing, heavy sweating, and burning/stinging pain zaps all over my body are exhausting and miserable.  I’ll be so glad for any helpful treatment.

nerves

I’m thankful that now I am seeing one-less specialist.  We’ll be saving money and traveling time, too.  I’m thankful for all the ways this doctor tried to help correct my awful symptoms.  Hopefully, these waves of neuropathy can be addressed by my rheumatologist.  I’m anxiously awaiting that appointment because she will most likely increase my dose of Plaquenil.

We also got terrific news from insurance yesterday!  They authorized payment for me to see the specialist at Duke.  She’s a specialist in Cutaneous T-Cell Lymphoma and can diagnose or dismiss this concern.  I will be glad when that July appointment is done.  But, for now, I’ll just take one day at a time.

Disclaimer: I’m not a medical expert and this post is not to be taken as medical advice.  If you have a medical concern, please consult your personal physician.

@2018, copyright Lisa Ehrman

 

 

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4 Comments

  1. Hi, this was a really interesting read, especially as I have some similar symptoms (migraines with auras, numbness down one leg and spasms in the other, along with intermittent weakness in my hands). I have been told that if you have migraines you won’t have seizures – so, obviously not true? p.s being signed off and having insurance cover approved is always great news 😀 Lowen @ livingpositivelywithdisability.com

    1. xaoti

      Unfortunately, migraines can definitely happen to those with seizures/epilepsy. I’m sorry to hear about all your bad symptoms, but I do love how much we gain from seeing each other’s experiences with illnesses. I’ll have to come over and check out your blog 🙂 Thanks for sharing, Lowen 🙂

  2. Calvin

    Neuo waves are interesting to learn about..

    Those conditions Sounds painful.. yikes

    1. xaoti

      Thanks, Calvin. I love spreading awareness about these invisible conditions. 🙂

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