CME is Now “GFAP Astrocytopathy”!

Twelve years ago I was diagnosed by doctors at the Mayo Clinic in Rochester as having a rare autoimmune condition that they’d identified only five or six times before but had not yet named.    While I was being treated, they arrived at the name of Chronic Microglial Encephalomylitis.  During my recovery, I wrote about it in this blog.

At the time, the primary confirming evidence was the shape of the lesions formed in the brain and getting that evidence required invasive surgery.  Recently it came to my attention that within the last few years, Mayo has discovered an antibody marker that can confirm the diagnosis and as a result, they have renamed the condition to GFAP astrocytopathy.

Articles about these discoveries can be found at the links below.

https://jamanetwork.com/journals/jamaneurology/fullarticle/2548268#noi160060t1

I am patient M/53 in the table available at the above link.

https://discoverysedge.mayo.edu/2017/12/18/autoimmune-disorders-unmasked/

http://n.neurology.org/content/90/15_Supplement/P1.156

Musical Hallucinations

My wife brought my attention to this article about Musical Hallucinations.  It was of interest to both of us because I “suffered” from these during my recovery from Chronic Microglial Encephalomyelitis (CME), a rare autoimmune neurological ailment.

One of the songs that played in my head – over and over and over – was one whose tune I knew I’d heard but whose name and writer I knew nothing.  A year into my recovery, after the hallucinations finally stopped, I heard the song on the car radio and rushed home to search the web for a match to the one lyric I had memorized.  The song?  Tears for Fears’ “Everybody Wants to Rule the World”, which is now one of my YouTube channel favorites.

Singing (and playing) in the New Year

I began playing guitar when I was thirteen years old but after being glued to it through my college years, my enthusiasm waned as marriage and career claimed primary places in my life.  When I was in recovery from the serious illness of CME I realized I’d let go of something that was really a part of me and as part of my self-designed recovery therapy, both physical and mental, I picked up the guitar once again.

At first, I was able to play for only a few minutes a time, and what I did couldn’t really be called playing; the nerve damage my body was slowly repairing would made me unable to move my fingers in any coordinated way so most chords were begginer’s efforts and right-hand picking gave way to strumming.  In addition, the pressure of the strings on my fingertips caused severe pain and left indentations that remained for up to an hour after playing.

Despite the pain and frustration, the mere act of trying focused the mind on something in the future rather than the present and gave one hope.  Gradually, the nerves healed and my mind began to remember songs I’d not played for years and my body began to allow those memories to translate into something approaching music.

Once fully healed – or as fully healed as can be expected – I began first to record my playing, moved to posting on Youtube, and then began to attend open mics in the area.  The latter efforts pulled me away from Youtube but since I had a lot of vacation days remaining, I decided to post a few more tunes, the links to a few of which are below.

These were all done using a ZOOM Q3 recorder wothout amplification.  In some instances the audio was enhanced in Audacity and recombined with the video in Avidemux (both programs are free).  The video quality is something I need to work on and a Christmas gift of the newer HD version of the ZOOM should help with that. 

Oh, and it’s also becoming clear I need to work on my stage presence, which is pretty much absent.

Ponies:  http://www.youtube.com/watch?v=ucLWiiDmZJM&feature=share&list=UUzE3-aPNSV3E9QKuBMtVnmA

Quando Quando Quando:  http://youtu.be/HnuE_EHGm2U

California Town:  http://youtu.be/ucLWiiDmZJM

Chronic Microglial Encephalomyelitis; It’s Official

UPDATE 6 NOV 2018:

CME is now known as GFAP Astrocytopathy https://wordpress.com/post/paulashley2.wordpress.com/120

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Several years ago I blogged about my experience with an autoimmune condition that was only then being identified by the Mayo Clinic, where I had ended up after I could find no one in Chicago to help me. I let this site, and the subject, languish for several years, but was reminded both when I received an email notification of a response to that old blog post, apparently made by one of the few others (only seven have been identified by Mayo) who had this affliction and had been helped by Mayo. So when I received some interesting news from my recent Mayo checkup, I decided to post it here.

At that visit to Mayo, upon questioning my doctor as to whether there had been any new occurances of the condition, I was told that In October of this year, a Mayo team, including my neurologist, had finally presented a paper on my disease at the 2012 Annual Meeting of the American Neurological Association. Thus the disease’s name, chronic microglial encephalomyelitis (CME), is now official.

A summary of the presentation’s contents can be found on line in the ANA’s 2012 Abstract Book, the relevant text of which I offer here:

2012 Annual Meeting of the American Neurological Association in partnership with Association of British Neurologists

October 7–9, 2012, Marriott Copley Place Boston

T1802. Chronic Microglial Encephalomyelitis (CME)

Allen J. Aksamit, Brian G. Weinshenker and Joseph E. Parisi; Rochester, MN

Six patients presented with a unique corticosteroid responsive disabling subacute encephalomyelitis evolving to chronic cognitive and behavioral dysfunction, tremor, myoclonus, and optic nerve swelling. Five patients also had myelopathy with longitudinally extensive T2 hyper-intensity on MRI of the spinal cord. MRI head was characteristic with periventricular diffuse T2 white matter abnormalities with a prominent pattern of radially oriented, linear perivascular increased signal, that enhanced after gadolinium. All had spinal fluid pleocytosis. All had a poorly defined systemic autoimmune illnesses. Brain biopsy in each case revealed prominent perivascular microglial activation and lymphocytic cuffing without demyelination or other specific features. The initial outcome after high dose corticosteroid therapy was favorable. Chronic immunosuppressive therapy was required to prevent relapse. We propose to call this syndrome chronic microglial encephalomyelitis (CME).

Whether this condition represents a single disease entity or a common syndrome of many causes is unknown. However, it can be recognized and differentiated from CNS sarcoidosis, lymphoma, vasculitis, and multiple sclerosis. It can be treated effectively, but requires long term immunomodulatory therapy to prevent relapse.

Study supported by: NONE.

My first Youtube upload …

My recording device is on the fritz so I thought I’d give Youtube a shot.  I don’t have the right equipment so just whipped this up using a little Casio Exilim.  Not the greatest sound –  or scenery – and it shows my age!, but I can live with that.  It was fun and I’ll try it again.

Rudy’s Gone Home

Last Monday, after a slowly declining for several weeks, we put to sleep our 11-year-old cat, Rudy.  He had succumbed to a rare cancer of the oral cavity.  He went quickly and wasn’t in great pain. Rudy got his name from our kids who, when they first saw him shouted "He’s so little!", a famous line from their favorite movie, "Rudy".  Rudy didn’t stay little, however, and grew to hover around 15 pounds.  But it was 15 pounds of fun and love.  He was an extremely affectionate boy who would purr like a motorcycle at the drop of a hat, even when growling, which he didn’t often do. During my long recovery from illness, when all I did was sit on the couch and read, or soak my feet in the middle of the night, Rudy was always there next to me, keeping me company. He will be greatly missed.

I’m Back, and with ReverbNation

For many reasons (tough times at work, health problems of parents, children, and pets) I’d taken a several-month hiatus from using Spaces.  Now on my return I find it quuite changed so decided to make some changes myself.

 

 I’d always been frustrated that other browsers couldn’t run the embedded Windows Media Player offered on Spaces so I’ve added a widget from my new ReverbNation site that I’ve tested in Firefox and Google Chrome, and even using Ubuntu Linux (another story).  I’ve still kept my my song list exposed for now but the RN widget lets you scroll through songs and pick one to play, and the link above it goes to my RN site.

 

The new "Now Playing" song, "The Moon is Still Over Her Shoulder",  is one I did for Valentines Day, using my new Simon & Patrick Woodland Cedar 12-String.

Moonstruck

	Moonstruck, one of my favorites, was on tonight. I saw myself, past and present combined, in both Ronny and Loretta’s father. It has it all, a raven-haired Italian beauty… with passion and music to match. A wonderful movie full of life, sadness, regret, the full moon, hope and love.

Timing is Everything

 

It’s amazing when we think of how much of life hinges on timing. 

 

"If I hadn’t turned the corner at that specific time, I wouldn’t have met …"

 

If I hadn’t stopped for gas, I wouldn’t have hit that car …"

 

I had one of these yesterday while riding my bike.  I had meant to ride in the morning but it was too cold.  I instead went for a ride in the evening, and after starting out I remembered I had forgotten to take my cell phone and had to return home.  All the timing of the little decisions that day led to the day’s highlight …

 

I fianlly got on the bike path I had intended to be on 12 hours before and was riding resting on the handlebars and only seeing a few feet of path in front of me.  All of a sudden something appeared on the path in front of me – a beautiful hawk.  Both of us were startled and as I rose in my seat he flew off the path.  I must have just missed running him over.  I looked up for him in the middle distance and saw nothing but as I scanned to my left I found him not 6 feet from my shoulder, flying right alongside me at the same speed.  I could see his speckled chest, his eyes, and the sharply curved beak.  He veered off to perch on a power pole and I rode on.

 

Made my day.

 

Timing is everything.

Are You Better Off?

 

A great article by George Will, in which he discusses the often-asked political question, "Are You Better Off than Four Years Ago?", got me thinking …

 

In 2004 I was recovering from an autoimmune attack on my lungs, my house needed repairs, my neighbors’ yards looke like dumps, my daughters were still home (!), and I wasn’t playing guitar because I wasn’t much interested in anything outside of work.

 

Today the kids are on their own and do pretty well (I still worry about them), the house is getting needed repairs, new homes with friendly families (and nice landscaping to look on) have built, and I’m back to my guitar and have even bought a new one.

 

Four years ago I was not exercising much and had on more weight than I wanted.  This week I just passed 330 miles on my bike for the season and my weight is down.

 

I’ve recovered from a second autoimmune attack, am back to work, and yesterday just lazed on the deck in the sun.

 

Not too bad at all.