Chapter 50 "You're quite right, Mr. Hatter. I do live in a topsy turvy world."

So, after four years of a diagnosis of FTD, with symptoms beginning before 2002, we now have a new diagnosis.  Central nervous system autoimmune disorder, or inflammatory  disorder.  In particular his condition is characterized by the following antibodies: 1) alpha-3 ganglionic AChR antibody disorder 2) Rheumatoid factor 3) speckled antinuclear antibody and 4) SS-A antibody.  These antibodies were detected through blood tests done by our new neurologist.  Interestingly, when I research these antibodies, they usually indicate something specific like rheumatoid arthritis - Dave doesn't have this - or cancer - Dave had CT scans of everything and no evidence of cancer - lupus - nope, no symptoms of lupus - MS - nope - no lesions showing in his MRI's - Sjogren's syndrome - nope!  Dave's symptoms have always fallen right in line with FTD - textbook - except his progression has been very slow, and his atrophy is the frontal and temporal lobes.  In summary, he has an autoimmune CNS disorder creating a number of antibodies that have attacked his brain causing his cognitive symptoms and brain atrophy.  Since he has gone a long time without severe changes, it is likely he will just continue to smolder along and it is not likely he will develop a different syndrome or get a lot worse over time, according to our doctor.  

I'm still trying to wrap my mind around this - the first couple of days after our doctor visit, I spent a lot of time crying.  Because, selfishly, all I could think was how can I do this for thirty more years?  But after letting it all settle in and percolate, I decided to try to look at this positively - it's not terminal.  I have already stopped waiting for a big shoe to drop, stopped looking for a change each and every day, waiting for the incontinence to kick in, wondering how much longer I'll be able to work.  So that's good.....the sense of urgency has receded.  He is starting on Methotrexate - it's often given to treat rheumatoid arthritis - it's actually part of the armory for chemo in treating cancer.  It's an immunosuppressant.  Scary.  It might help.  The sense is he's had this for so long, there will be no reversing things.  But what do we have to lose, right?

I also found this information tonight - "neurologists at Mayo Clinic in Rochester, Minnesota, have found that patients whose symptoms mimic those of neurodegenerative dementias can actually have an autoimmune cause for their conditions. Although autoimmune dementia responds to immunotherapy, the disease often goes untreated because of misdiagnosis as a neurodegenerative or psychiatric condition."  "It can be devastating for patients to be labeled with a neurodegenerative disease but actually have an immune-mediated dementia, because they're missing out on a treatment that can reverse their symptoms," says Eoin P. Flanagan, M.B., B.Ch., a consultant in Neurology at Mayo Clinic in Rochester, Minnesota. "If treatment is delayed, patients tend not to respond as well. It's important to recognize this condition because you might miss your opportunity for treatment."  Hmmmm.  So if this had been caught awhile ago, it could have been reversed?  That's depressing. 

Plus, how many others have received this diagnosis like we did and the right blood tests weren't done?  Oh well.  It's the practice of medicine.  Most research I find are that symptoms usually come on much much faster for autoimmune disorder and include headaches and some other things that Dave has never had a problem with.  

In researching the Methotrexate, I found several articles indicating it might cause "foggy brain" - oh great!  One thread indicated neurologists who believe it might cause FTD, and rheumatologists saying it would not happen that way.  UGH!  

I'm thinking of getting a second opinion at the Cleveland Clinic.  I'm going to let it percolate for awhile.  It has already gotten so complicated and convoluted!  

So I may be closing up my blog soon, or change the name, or something!  I guess I should wait til I see about a second opinion.  But if going through this helps one person ask for the right blood tests to make sure there isn't an autoimmune disorder, it will have been worth it all.  

Spring has finally sprung!  A beautiful day today.  Can't wait for a few more.  It lifts my spirit so much, and helps me get through the day.  And do it all again tomorrow.