Thursday, December 30, 2010

A Mini-Rant as we leave 2010: Please, just do your job!

Is there anything more frustrating than dealing with people who can't (or won't) do their jobs?  We see this all the time and it's become so pervasive that many of us have come to expect poor or incompetent treatment from salespersons, service people, bureaucrats, government officials, et. al.  It's a sad state of affairs, I tell you.  But I don't expect that attitude from my treating physicians.  The last two months have been so strange in dealing with my neurologist and his staff that sadly, I feel it's time to make a change. 

My first clue:  I had a follow up appointment in November to discuss treatment options following my venoplasty.  I was excited to show Dr. S. the small improvements I had.  I told him I had applied for SSDI back in October and asked if he had sent the records they requested.  He leafed through the chart and said, no, he didn't see a request.  Strange I thought  - I'd have to call them to follow up.  At least I had sent in whatever MRI records I had which contained my diagnosis.  I later called and they said they sent two requests.  I suggested they make another request by fax since that office seems to respond to faxes... I hoped.

I'm getting a bit annoyed now. 
Clue two:  His plan was for me to go on Tysabri, but after a lot of research and thinking, I decided that was not the route I wanted to take.  Too much risk for a possible benefit.   The other drug available to me was the newest flavor on the block, Gilenya (generic: fingolomid).  This oral medication was unbelievably expensive and the list of side effects would make anyone run for cover.  Even Dr. S agreed it was too new and too scary to try.  So as a person with SPMS, there were no other 'approved' options left for me.   I wanted to try LDN - Low Dose Naltrexone - which a lot of MS patients swear by.  It is a very safe option, and if it didn't help, well, it couldn't hurt.  Dr. S. said he didn't know much about it but was willing to prescribe it after he got more information.  I came prepared with written LDN Fact Sheet, and I also said perhaps he could speak with Dr. X, another MD in the practice who was known to prescribe it.  Here's where it got weird:  he asked ME to call Dr. X's office and find out what the dosing should be.  I said, wouldn't it be better if you or your nurse called and got the information.  He said they were too busy (he said it nicer than that but that was the bottom line).   Too weird.  I didn't pursue it - but I did call, and Dr. X's nurse and I had a long discussion about how strange this was.  I was told to call Dr. S. and have him call Dr. X directly, (no shit).   So I did - left 2 messages for his nurse and it's now December 30th and I've yet to hear back from anyone.    (So I ordered the LDN on line and started taking it a month ago, titrating per the fact sheet.  No side effects so far.)

Clue Three:  Last week I get a call from the woman handling my disability claim asking me to go to two independent doctor's appointments before they make a decision.  I questioned why this was necessary since by now didn't they have all my neurologist's records?  No, she said.  They never received them after numerous requests and now I would need to get an independent exam.  Plus she wants me to see a psychologist as well.  Why I asked?  Because you're on an antidepressant.  Oh, I say, but that's only because of the MS medication I used to be on.  She said, that's our policy.   So of course I agree to the exams and then fire off a fax to my doctor asking, begging them to send the records so I don't have to endure this.  No freaking response and so, I had a 45 minute appointment yesterday with an odd doctor in an awful part of town which I can only hope will help my application.  The shrink is scheduled Jan. 10th.

So now I have to find a new doctor and hope the SSDI people actually read and listen to the reports that they do have.   I have no idea who I want to use as my neurologist now... a whole 'nother dilemma.

Next: had to call my old job about a benefit question.  Called twice last week; sent a follow up email, finally called again yesterday and left yet another message.  Geez people - just do your jobs!  Finally got a call back with an answer.  One down.   I'm just fed up and aggravated because if people would just do their jobs the world would work so much better!  OK - rant is over.  On to something positive!

I'd like to leave you with this excellent video of Doctor Salvatore Sclafani who explains CCSVI and the current state of knowledge and research in a very realistic way that anyone can understand.  I love the comparison he makes with vaccines - listen and you'll see what I mean.
       Click here for the Interview wth Dr. Sclafani

I will actually get to meet Dr. Sclafani in January when I'm at the ISET conference in Miami helping at the CCSVI Alliance exhibit booth.  I may even get to meet Dr. Zamboni!  The book I'm working on is coming along and I'm hoping we get it done in time for the March Tampa event. (I'll have to tell you about that in my next post.)  Looking forward to singing with Andrea Bocelli on Valentine's day and to the Verdi Requiem in March with Master Chorale.  Many good things to look forward to in the new year!
No resolutions this year.  Just a promise to myself to do whatever I can to get healthier and to continue promoting education and research about CCSVI.  

My wonderful friends and family, I wish you a happy, healthy, new year filled with learning, loving, music and joy!

1 comment:

  1. Yes and we should subtract what we do for them from their bills too!
    Years ago there was a plan that patients who waited in doctors waiting rooms for exorbitant or ridiculous amounts of time were allowed to charge back to the doctors for their time.
    Sadly, I never heard whether it ever got off the ground as a bill in congress as so many do get vetoed. But I did write an editorial comment about it way back in 1997 when I had been made to wait, in agony and finally left after two hours of waiting in my GPs office!