OK – Here’s part 2 in my Optic Neuritis story.  This is how my health care providers have been “providing care.”  Am I a happy, well-taken-care-of patient.  Unfortunately, NO.  I’ve never been so frustrated with physicians  and the medical system in my life!

I really do try to give people the benefit of the doubt, but in the last 7 months my patience and tolerance for poor quality service has shortened my fuse for putting up with less than adequate care. I hate to call out people by name as I’m really not trying to slam folks, but let’s start with my experience in the hospital as they were putting my pick line in so I could administer my own IV steroid push.

I arrived at the hospital at 8 or 9am.  My head is pounding as there is enough pressure on my optic nerve that I’ve spent the last two days in tears.  Think it was about 9pm before they got my line in and gave me my first dose of steroids!  Why did I wait so long?  The nurse didn’t realize she had to call in the orders…

Once home, I had a great home-health care.  They showed up once to help show me how to administer my own drugs, and once to pull the line out.  Then I had 14 days on oral prednisone to taper off completely.

3 days after I was done with the steroids, I was worse than before it started!  Vision went quick, and was more impaired than when this started.  Called my eye doctor and he wasn’t in the Wichita office that day, so I drove an hour to Hutchinson to see him.  Worthless… His comment was to go back to the Hospital and have the doctor that prescribed the steroids before treat me.  Mind you the Doctor that saw me at the hospital was the guy on call that day.  My Wichita “eye specialist” seemed to only be able to confirm that there is a problem.  Actually treating it seemed to be beyond his scope of practice!

So I contacted the Neuro-Opthalmologist that I saw ten years earlier at the Dean McGee Eye Institute in Oklahoma City.  Dr. Bradley Ferris is a GEM!  I drove down to see him for an evaluation, and he started me on oral prednisone since another round of the 250mg by IV didn’t seem safe to repeat in such a short period of time.  Dr. Ferris was willing to help manage my medications by phone – Yippee!!  A doctor with a brain, and great bedside manner!

While the 60 mg. of prednisone daily helped take the edge off, it didn’t reduce the pressure on my nerve enough to restore my vision, or make the problem go away.  Over the next 2 months we tried to whittle my prednisone dosages lower, but less than 20mg and I’d start getting worse.  Since it’s not safe to be on such high dose steroids for this long…his recommendation was to find a Rheumatologist in Wichita who could help transition me off steroids and onto a non-steroidal anti-inflammatory.

So, my primary care doctor referred me to a doctor at ARCK – Arthritis and Rheumatology Clinic of Kansas.  At my first appointment, the doctor didn’t make it in that day…  We had to reschedule.  At my second appointment, she didn’t want to begin switching my meds because I was getting ready to go out of town.  10 weeks later, at my next appointment, she wanted to do some lab work before we did anything else and she wanted a local eye specialist to see me prior to each appointment with her. (My next appointment with her was scheduled 6 weeks after this!)  The day before I was schedule to see her, I had an appointment with a new eye specialist in Wichita.  My appointment was scheduled at 3:40 in the afternoon.  I left the doctor’s office at 7:30pm that evening!  Most of this time was sitting in the waiting room…  The doctor, who I had never met before, came into the room – didn’t bother to introduce himself, sat with his back to me the entire time, asked his tech to run 2 tests, and left the room.  They did 2 tests on my eyes and handed me my slip of paper to check out!  At the bottom it said “Call”  Which I was told meant the doctor would call me.  A week later I was in the eye doctor’s office twice (once to request my medical records, and once to pick them up.)  and asked when I would hear something.  I was told, “The doctor has your file and will call you.”  That appointment was on August 2, 2010…I still have not received any follow-up from this so called “eye-care specialist”

OK – back to the Rheumatologist drama…So, 6 weeks later, I show up expecting that today we’ll start getting me off steroids…and hear, “Well, since I haven’t received any information from the eye doctor and you haven’t been to a neurologist yet, we’re not going to change your medications.”  She then handed me the checkout slip that said come back in 6 weeks!  This was the straw that broke me…  I burst into tears of utter frustration.  It had now been more than 3 months since my OKC eye doctor had requested local help in getting me off steroids, and I was not 1 step closer to making it happen!

The Rheumatologist NEVER TOLD ME I was supposed to see a Neurologist!  She wrote it in her notes.  Nobody read them, Nobody told me, and Nobody scheduled an appointment!  The only way you get an appointment with these guys is by referral.  Without the doctor’s office scheduling the appointment, it’s a 6-9 month wait or longer to be seen.

I called ARCK for two weeks leaving messages for the gal that scheduled appointments before she called me back to tell me that my neurologist appointment was 1 day after my next scheduled 6 week-out appointment with the Rheumatologist!  Can you see the smoke, fuming out of my ears?  My vision has been impaired for almost 6 months, and the longer there is pressure on a nerve, the less chance of a full recovery!

I’m now sitting in my primary care physician’s office, discussing the LACK of care that I’ve been given in regards to this issue.  Unable to facilitate things myself, I asked if there was anything he could do?  One phone call and 5 minutes later I had an appointment with a Neurologist the following Monday.

Neurologist…nice guy – bless him for deciding that a Spinal Tap was not necessary.  Ran me through the normal battery of tests, touch your nose, balance, etc… and decided that since we’ve already done MRI’s of my brain and they’ve been normal, let’s do a full MRI of your spine and see if anything shows up.  Also did lab work to check for Devic’s disease.

Four days later I’m at the MRI place.  What they didn’t tell me as an independent company, was that payment is due at time of service.  That was the surprise at the bottom of the stack of papers you have to fill out when you arrive.  Do you know what an MRI of the Spine costs?  Almost $7,000!!!  Granted insurance would pick up most of this…but 20% of $7,000 isn’t something I’m going to pull out of my back pocket at a moment’s notice!  Also…by this point I was requesting all my medical records from each doctor at each visit.  I was told by Tallgrass MRI that I could not have a copy of my records, or a copy of the films.  (Haven’t had the energy to push this yet…but I want my films!  If I’ve got to pay for them, I should be able to have them!)  Makes life much easier when you’re running from Doctor to Doctor to be able to provide the information they need while you’re there (since record requests don’t always make it in a timely fashion before your appointments!)

Have you ever had an MRI?  It was two and a half hours of laying completely still with the sound of heavy artillery constantly ringing in your ears!  Half the tests were without dye, then they repeated everything with dye.  The tech promised I would be done by 4:30, since I had to get home to teach Pilates class.   She finished with me at 5pm.

I then waited….  And waited….  And waited…  to hear back from the neurologist!

The week of August 16^th was my Neurologist appointment and MRI.  Think it was September 23 when I finally got a follow up call from the doctor.  ( I had called his office twice requesting results.  The first time I left a message – and on their machine it said, “Please do not leave multiple messages as this will only delay our response”  A week later I called again to leave a 2^nd message and actually got a person, who said, “your records are on his desk, so I’ll move them to his chair.”  GREAT…  so how many more weeks before he returns my call?  Two days later he returned my call, and say’s everything came back normal.  You don’t have M.S. and no other protocols are indicated.

So it’s September, and now the Rheumatologist is finally agreeable to start changing my meds to get me off prednisone and onto some other non-steroidal anti-inflammatory.  But I haven’t had a good experience with this doctor…  AND the drug they are considering switching me to is methotrexate.  Which means monthly lab work to be sure my organ systems are not failing.

Have you seen the side effects of this medication???  Skim through the weenie list of side effects for the consumer, and read the side effects for the professional!  There is not a body system that has the potential to survive taking these drugs.  Read more here http://www.drugs.com/sfx/methotrexate-side-effects.html

I can’t take anything, not even vitamins for more than a couple of days without feeling toxic.  Prednisone is bad, and I know I’ve got toxicity issues being on it, but what is a year or longer on methotrexate going to do to me and the rest of my body?  PLUS, all these drugs are doing is trying to keep my symptoms under control.  Nobody’s figured out a cause, or a cure…  And I just don’t believe that drugs are my answer.  Besides, I’m looking at having to see an eye doctor once a month (who still hasn’t followed up with me from an August appt.) and it’s actually faster for me to drive to OKC and see my GEM of an eye specialist there – then to be seen locally, but the Rheumatologist is unwilling to work with my OKC doctor!  Then I’ll have to see the Rheumatologist once a month, and get lab work done monthly…. For as long as they feel I need to be on medication.  They’ll make more money keeping me half-sick, and just managing symptoms, than helping me try to figure out what I can do to get this flare of Optic Neuritis to go away!

So am I a little biased with my opinion on Western Medicine being helpful, or harmful?  Well, at the moment the answer is, YES!  I’m trying to hold a positive thought that there is good medical help out there.  In fact my dad’s a physician, and a good one.  Bless him for being a sounding board for me.  Even he is amazed at the stories I’ve shared!  And then he comments, that many of his patients express similar stories when dealing with the medical system.

Here’s my advice for those medical offices that are “too busy” to take care of their patients.

• Hire more staff and get on top of your scheduling.  Or see fewer patients!
• If you don’t feel confident to treat the problem, refer your patients to a more qualified professional.

And if you’re a patient and  happen to have some sort of medical issue that requires attention.

• Take someone with you to all appointments.
• If you’re in the hospital – always have someone there with you.
• Request all medical records from each specialist so you can help manage your care.
• Document everything!
• Be a Squeaky Wheel!

On 10/10/2010  the next chapter in my Optic Neuritis treatment plan begins…  Stay tuned for details…