Monday, February 18, 2013

My Myoclonic Seizures




Myoclonic seizures involve brief one to two second jerks of the extremities (i.e., "lightning" or "shock-like" jerks), usually on both sides of the body. The movements created during the event can look awkward and sometimes be mistaken for clumsiness. Several epilepsy syndromes exhibit myoclonus, including juvenile myoclonic epilepsy (JME) and Unverricht-Lundborg disease. People with JME experience these seizures upon awakening or in response to flickering light. Irrespective of condition, the anticonvulsant valproic acid (Depakote) manages myoclonus well.

Tonic-Clonic and Clonic-Tonic-Clonic Seizures

As its name indicates, tonic-clonic seizure designates an episode with both tonic (i.e., muscle locking) and clonic (i.e., involuntary convulsion) phases. Early in the tonic phase, the airways constrict forcing out breath and producing audible gasps. The individuals will then collapse and experience clonus, during which time they might bite their tongues or lose bladder control. Emerging from a tonic-clonic seizure, people will often feel confused and exhausted. It might take hours to recover. The Epilepsy Foundation states that tonic-clonic seizures represent the most common type of generalized seizure, although seizures following a clonic-tonic-clonic pattern can also occur.


 My notes:  I was tired in the video, yes, and sometimes when I'm tired I have the worst jerks.  It is just as it looks like..uncontrollable jerky movements, sometimes my hand jerks and I drop what's in it, sometimes my torso jerks (it does a little in the video as well) and sometimes my entire leg jerks itself like a kick to an invisible dance!  Occasionally after a set of small seizures or after a big one I get tired, very tired and feel a bit confused and just de-energized.  Most of the time it's just like having an annoying habit.  A step farther than the twitch under my eyes during nerve attacks.

I have learned that epilepsy can be many things.  I denied I was having seizures for a very long time.  My rheumatologist and pain management doctor waved it off as well.  Possibly because of the conviction set forth by my denials, lol!  But I knew the jerky movements were getting worse, and I started having them while fully aware and awake..so there's no brushing them off.  My EEG found slowing in the left side of my brain- and my neurologist pinned it as seizures.  Over a year ago my GP, a smart brilliant ole guy nailed it as well.  I am having seizures!  I never thought I'd be saying this..what a shocker.

Is it from my lupus?  Of course it is.  I believe it has more to do with lupus damaging my nerves and the inflammation of those nerves then it does with any brain damage.  It has the same result I suppose, but I'm convinced it would be wrong to label it as CNS lupus!  Yes I have peripheral nerve issues (bodywide nerve entrapment syndrome-bilateral carpal and tarpal tunnel, ulnar, trigeminal neuralgia and occipital neuralgia but no brain lesions found in my MRI.  That clears me of true CNS lupus.

Now I do have the slowing and I have some short term memory issues without a doubt!  I write things down, everything down, I play memory games and problem solving games at lumosity.  I play word games as well.  I do what I can.

The most important thing is I am still ME.  Losing control of nerves and muscles IS scary, yes, but its not the end of the world.  Some people can't walk.  Some people are dying of cancer.  I'm not.  I'm a lucky woman with a wonderful family and many friends I adore that I have met online with lupus like me.  They are all blessings!  

I am happy and feel fulfilled.  

Surgery in FOUR days now!  Had my presurgery appt today and all went well!  I'll update after the surgery!  If your reading this, then thank you!!!!  HUGS and may you have more good days then bad!  Love Julie




Thursday, February 14, 2013

Anterior Cervical Fusion & DIssectomy Next WEEK!

For those of my friends that don't know, I'm having a cervical anterior fusion and dissectomy next Friday, Feb 22nd.

I have osteoarthritis in my neck, and it's gotten really bad. This is from "birthdays", lol and not my lupus. Although inflammation from lupus does make it a bit worse.

I have 3 discs herniated over 5mm with severe neural foramina on the right, a radiculopathy, some balance issues, carpal tunnel, some incontinence, tingling in my 4th and pinky fingers and numbness in my third. And I might be needing that one especially if the surgeon messes up, lol. heehee.

I've had radiofrequency ablations, cortisone and nerve blocks for the last five years for it and they aren't working any longer, plus I keep getting rashes and lesions at the shot site!

Considering my occipital and trigeminal neuralgia, my rheumatologist and neurologist agree that A) the surgery is necessary since I'm close to where it could give me permanent damage and B) it may after healing REDUCE the inflammation which has a domino effect with my cranial neuropathies.

That is my best case scenario. I know it will fix my radiculopathy. I know in the long run I will have less pain in my neck. If it works on the TN and ON then it's a true winner of a surgery!

I've got a good surgeon I trust, a very good hospital and I feel like I'm in good hands. I go in on Friday and I'll be out and about by Sunday. I wear a cervical collar for a few weeks, do some PT and the bones will fuse together all on their own. The surgeon is using some bone from my hip for material.

:) ps. here's an animation for anyone who wants to know what it is and/or may be going through a similar problem: 



Wish me luck and give me an extra thought and prayer for next Friday (a week from this Friday)..Love and HUGS, Julie

Tuesday, February 5, 2013

Pemphigus Erythematosus or AKA lupus discoid rash with weeping

First my rash.  I saw my rheumie and he said something about it being pemphigus.  I thought it was just subacute cutaneous lupus.  (in addition to my SLE)  Btw I am very confused about lupus rashes, lol. 

Here is a pic of the rash and then another pic of it healing five days later.  It itched, it seeped it was in a circle with dark edges.  It hurt and pulled the little hairs on my neck.  I"d wake up with my long hair stuck to my neck.  Really gross stuff.  I had one like this on my chest (left me discolored but not scarred) and one on my face and one on my head.  (see my rashes page).




The various types of pemphigus include pemphigus erythematosus, pemphigoid, pemphigus vegetans, pemphigus vulgaris, and pemphigus foliaceus.

Pemphigus erythematosus, also known as Senear-Usher syndrome, is an overlap syndrome with features of lupus erythematosus (LE) and pemphigus foliaceus. Pemphigus is demonstrated by acantholysis and immunoglobulin deposits in the interkeratinocyte substance (see the image below).
Direct immunofluorescence microscopy performed on Direct immunofluorescence microscopy performed on epithelial biopsy specimen obtained from a patient with pemphigus vulgaris detects immunoglobulin G deposits at the epithelial cell surfaces. 
 The lupus component of pemphigus erythematosus is demonstrated by circulating antinuclear antibodies (ANA) and sometimes by immunoglobulin and complement deposits at the dermoepidermal junction
For a thorough description and introduction to the possible causes of pemphigus, see the article "Pemphigus: An Acronym for a Disease with Multiple Causes ", published by the International Pemphigus Society.[1]