Data Dummy: Johns Hopkins - The Neuro Masters(?)

An Update-less Update
A Fruitless Follow-up to: Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha (posted 12.17.08)

Author's Note: I am typing this by muscle memory through blurry eyes and double-vision. Please forgive typos. Disclaimer: Quotes may not be exact due to short-term memory.



I have never been more more misled or lied to or misled since my diagnosis of transverse myelitis(TM) on September 18, 2008. Relative to my 33 years on this earth, that's a statistical nightmare.

Who are the culprits? Enthusiastic-I-Heal-All-Wounds-And-Ailments-Specialists.

While I appreciated the optimism (and believed it) in the beginning, I'm up to my c-spine with broken promises and the knee-knocking disappointment that accompanies them.


JOHNS HOPKINS: THE TRANSVERSE MYELITIS "MASTERS"
or
PROMISES SHROMISES
It took a lot of work: on-line-researching, faxing, phone calling, faxing, hospital-records-visiting, faxing, plane-and-train-reservation-making, emailing, faxing, referral-getting, case-worker-consulting, pre-cert getting, phone calling, emailing, faxing, work-leave-permitting (I've used up every sick and vacation day and then some for hospital stays and surgeries), and in-Baltimore-transportation-arranging to prepare for the (relatively speaking) biggest, best-est opportunity of my lifetime: my appointment with the masters of TM.

Not only was I offered an appointment quickly - less than a month after they received all of my records, but as fate seemed to have it, they were practically in my back yard (it's a 75-minute train ride). I even had to turn to down an earlier appointment because it coincided with the start of my 2nd round of plasmapharesis treatment. Getting into Hopkins was like winning an academy award, being accepting to any Ivy League School, getting a $10K raise, winning the frickin' Olympics Gold Medal in swimming without knowing how to swim.

This was a match made in heaven, and in heaven there are no sick people or alarm clocks, everyone smiles and smells like vanilla blossom, nobody loses their keys or their lunch, and all questions have answers.

On December 17, 2008 - three months after my diagnosis, and two days after my last plasmapharesis treatment - my mother (who flew to Philadelphia from Pittsburgh (again) the night before) and I rode the 7:30AM train to heaven, which in this case was located in Baltimore, for my appointment with Dr. Pardo, a specialist at Hopkins' Center for Transverse Myelitis Research.

At the end of that 13-hour day, my mother was convinced that heaven did exist - we were on the right(eous) path. But I was tired, frustrated, and admittedly a bit puffy-eyed because we arrived with questions and left without answers, and as we all know, that's not heaven's tenet.

And the reality of hope sets in:
But by the next day, once I had processed the information and awakened from my Ativan coma, I recognized that no matter what my test results were, Dr. Pardo was going to help me:

1. He PROMISED to verify the TM and seek the larger, clearer, more inclusive diagnosis that he believed he would find and begin a new and improved TREATMENT plan based on those findings.
2. He PROMISED that if they were unable to make a clear diagnosis that they would DESIGN a TREATMENT path (perhaps by trial and error?) REGARDLESS of whether or not the new data findings were conclusive, which would be based on a "best educated assumption" of what was debilitating my mind and body.

These wonders were to occur within three weeks. Additionally, we were told we'd receive the results from my latest MRI on their state-of-the-art equipment within a few days.

Triple Yay!
A new plan to come. New hope. New possibilities for recovery. A new me, more like the old me was in my future again. Recognizing that Dr. Pardo not only had a nice smile but was going to provide me with the most appropriate, best, progressive treatment available was all I needed to feel some relief.


THE BAD BOYFRIEND DOCTOR
After several calls to Dr. Pardo's office requesting the MRI results, and some in-the-mean-time-while-my-condition-is-worsening direction, we finally received confirmation on Friday that Dr. Pardo would be calling me Monday with "further instructions."

A really bad boyfriend wouldn't have called at all, so I have to give him that benefit. Plus, although he felt me up and down with soft hands and iron-hard devices on our first meeting, I didn't offer any compensation.

But like most bad boyfriends who sweep you off your feet with their charm, promise the world and the moon, and to be there when you need them, but then ultimately drop you on your ass without padding or explanation (except that it's your fault) and a devout unwillingness to answer what you perceive to be important questions, I'm remiss to state, Dr. Pardo fits that role.

Like most women who find themselves with bad boyfriends, I sniveled while he let me down, sobbed when we said goodbye, consulted girlfriends (mom, Dr. Marni, and Alicia) who rooted me on with their "you're the best", "this isn't right", "how dare he", "we won't stop until we get you better" support.

While I'm ready to give Pardo a second chance (another condition of the good-girlfriends-attracted-to-bad-boyfriends-syndrome), it doesn't change the fact that I'm pissed off - not only by his deception, but that I'm yet again in limbo. I can recover from another's perjury, but there's no way my once malleable body could fold itself into the crowd-awing back-bend required to win that game. (Sidebar: In middle school, I was quite the limbo champion.)


THE LET DOWN
Over the last four years of "dating" myriad specialists, I've devoted myself to the few who not only find the answers, but do so proactively and with compassion. I expect the same from my docs as I do from my friends, boyfriends, or employees. Do what you say you're going to do, i.e., act with integrity.

Some doctors are data doctors. Some look at the big picture. Some speak in terms anyone can understand, and some speak to you the same way they'd speak to a fifth year med student. Some give you definitive answers, and some give you possibilities. Some predict your future, and some make your future.

Dr. Pardo presents himself as a big-pic-predict-and-make-your-future doc - a total package!
But he's a data man. And my data is as inconclusive as day 1. Surprise, surprise.

Now I'm no doc, but I've had 4 months in and out of the hospital to educate myself on TM, and that included reading every scientific article available online, consulting multiple doctors, and asking infinite questions to my nurses, docs, caseworkers, and fellow TM'ers. (Sidebar: Anyone with a serious disease or disorder should be as informed as possible, because you WILL NEED TO be your own advocate.)

Though I'm a rare disease novice, I learned the psychological importance of having a plan in place as my uncle battled fatal brain cancer. The worst thing not to have when you're sick is a plan. Plans give direction, purpose, hope. Basically, a plan of action is synonymous with man's search for meaning. We need meaning to exist.

The Man with a Plan:
While my current Philadelphia neurologist (whom I adore), Dr. Schwartzman has given me a plan (which has changed as many times as my wardrobe), it was a plan none-the-less. The only glitch, and this is a major one and not Dr. S's fault by far, is Aetna Insurance's continuous denial of coverage of the plan's treatment (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story posted 11.25.08).


THE DIAGNOS-LESS DIAGNOSIS, THE PLAN-LESS PLAN
Even though Dr. Pardo ordered every test he needed to confirm my diagnosis and reveal the big immunological picture that has risen the neuro body-snatching demons, and his clinical observations confirmed a "neurological issue that represented similarly to TM," he is still unwilling to give me a diagnosis.

While my symptoms and side effects clearly match only two neurological diseases: TM and MS, and TM can exist without supporting data and MS can not, Dr. Pardo is still contrary to verify what has been diagnosed by Dr. S, one of the other world's leading neurologists, and clinically observed by the Hopkins man himself.

Pardo's plan:
He still thinks "something is going on," wants me to make another trip to Hopkins to see their psychiatrist who specializes in MS and similar diseases, as well as their Rheumatologist, who will probably just look at the blood work like every other rheumatologist.

I know I'm sounding like a grouchy baby, but even I think I deserve a moment or two of bitching and whining.

Pardo's "further instructions" included a vague diagnosis of myelopathy (without defining what it is), an unidentified systemic disorder (perhaps Lupus, which can cause TM), and he inferred that my symptoms were related to depression. Depression! Even Dr. S, Dr. Marni, my friends and family, assure me that they would be surprised if I weren't depressed by a life-changing, debilitating, painful, prognosis-less disease. Even my mother's depressed because of my TM, and she doesn't even have it.

Pardo's big but (very loosely quoted):
I don't believe your current treatment plan is appropriate or working, and I am unwilling to offer any treatment plan.

My big but thought:
BUT TM has a very short window for best-case-recovery, which for most is only 90%. I have two months left to gain the majority of my recovery, and then a year and a half more to expect minimal changes. After that, I'm stuck. I'm running out of time.

Me:
If I don't have TM, how do you explain the incontinence, the vision loss, the cognitive problems, the neurogenic bladder?

Dr. Pardo:
I can't.

Action:
Phone consultation ends. After my sob-session and friend-buttress-convos, I researched myelopathy and was lead to articles on transverse myelitis. This article stated, "You may also hear the term myelopathy, which is a more general term for any disorder of the spinal cord."

Me:
Cop out.


So here are my lay responses:

My emotional/personal responses

1. I feel betrayed.
2. I think the doctor's oath should include, Do not make promises to patients that you can not keep.
3. I cannot rely on doctors.
4. I must be proactive.
5. Accept the gifts of emotional support from friends, family, and my new special friend.
6. Accept their offers of sharing the responsibilities of pursuing plan of action)
7. Don't let disappointment/illness affect my work. (I worked from home until 11PM last night)

My plan-of-action
(developed last night in collaboration with Marni (virtual doc/BF) and mom)

1. Explore every possible option.
   
2. Swallow my pride, return to John's Hopkins and see their psychiatrist and rheumatologist.
3. Get my current reheumatologist's opinion, Dr. Huppert, who is also magnificently treating my pain.
4. See neurological opthamologist at U of Penn Hospital (Pardo recommendation; appt. scheduled)
   
5. Schedule 3rd opinion by a new neurologist (at Penn?).
6. Wait for final decision from Aetna on IVIg treatment. Hope for the best.
7. Schedule appointment with hypnotist: quit smoking by 1.15.
   
8. Reschedule my appointment with Dr. Rozenzweig, an integrative medicine doctor, at The Healing Arts Center in Old City.
9. Work with Dr. R to explore Complementary Alternative Medicine (CAM) practitioners and treatments.
   
10. See Dr. S for my 1.22 appointment.
    
11. If by that appointment, IVIg treatment is not approved by Aetna, demand next possible treatment: chemo. (Note: Dr. S is against this treatment for women of child-bearing age)
    
12. Invest in hats, scarves, and perhaps a sexy red wig, if necessary.
13. Continue rehab at Magee.
    
14. If all else fails, go to Mayo Clinic.
    

And, like Schwartzman's plan-of-action, this too will probably be revised as much as a poem.


CONCLUSION-LESS CONCLUSION
Appreciate the orange reflection of this morning's sunrise painting my apartment walls. Be good to myself. Be patient (no pun intended). Savor my extended New Years vacation and the opportunity to share it with my mother (she arrives Wednesday). Get a mother-daughter-friend Tamar mani-pedi this week (they're on sale at Jean's Nails in the 1600 block of Spruce Street!). Delight in pain-free moments. Acknowledge my improvements. Accept my deterioration...as temporary. Meditate with positive intent. Breathe deeply into my spine (OT exercise). Vent as needed. Dress better than I feel. Be bright, therefore return to Diesel and buy those perfect ass-lifting, thigh-accentuating shiny teal pants. Attempt retail therapy moderation in favor of assigning income to CAM (after I buy those pants). Drink wine and vodka...separately and in moderation. Be unstoppable.