IMHO we in a America have a “NOT FOR PROGRESS” based healthcare system.

Pardon my rant here about Dr “Butt-head” and the “For-Profit” based healthcare system we have. 

And this is just one of the many examples of why I feel this way……..

  

Just another story to add to my disappointment with the healthcare system.  Only one problem……….the story is not supposed to include me.

 

It all starts in October of 2007………….

 I agreed to participate in the Fampridine-SR study at a Hospital here in Washington.  After a few visits w/ Dr “Butt-head” the study agrees to accept me even though I use a “Bioness-L-300”.

Fampridine-SR is a new drug manufactured by Accorda Pharmaceuticals and the drug supposed benefit is that it helps an MS person w/ walking speed.  An improved gait.

Fampridine-SR is basically 4-AP in a slow release version.  The federal government will have a decision on its future here by October 22nd.  Word around the MS community is that it will be approved.  A lot of MS people have been waiting for this drug to be approved.  Hopefully it will not be delayed any longer.

For me…….Fampridine-SR (4-AP) still provides an energy boost. But IMHO…..my body has become acustomed to it and I am slowly upping my dosage now that I am out of study.  My gait no longer is impacted by 20mg/day. I kind of look at it now,…..like a little MS “energy-boost” band-aid. Each 10mg tablet gives me about 7 hours of coverage.

The first part of the Fampridine-SR study was “double-blind” for the first 12 weeks.  Meaning: You did not know if you were receiving drug or placebo during that time.  I blogged during that time that I was receiving placebo.  A report received in the mail months later would confirm my thoughts.  I stuck w/ the study because I was guaranteed Fampridine after the 12 week period. 

My first dose confirmed my “placebo” suspicion. I noticed an immediate difference.  My gait slowly improved the next few months.  Unfortunately for me my body really liked the drug.  It wanted more than the 20mg/day that the study allotted.  I told the study people of this and they told me that their was nothing they could do and stay w/ the dosing schedule of 10mg/12 hours.  I did.

 

Forward 1.75 years,…to my decision to do stem cell.  I told the study people of my decision to do stem cell well before I went for the bone marrow aspiration in July of 2009.  (I have the emails to prove it).  Dr “Butt-head” informed his staff that the stem cell procedure was risky and that I should be very careful when traveling over sea’s to do any transplant.  I forwarded Dr “Butt-head” the protocol outline of the procedure.  I don’t believe he even looked over what I sent. Dr “Butt-head” then had his staff forward me an article of why I should not proceed with my decision.  I’m not sure if he though that I would read the article he sent.  The article he forwarded me actually validated the protocol that I was to participate in Israel.

 

My response to his staff (via email) questioned if Dr “Butt-head” actually was endorsing my decision to do stem cell.  I did not here a response after that.

Those email exchanges were in June 2009……..

….Two months prior……

  ……In April of 2009… Dr “Butt-head” visited the gym in which I am now doing “Lokomat” therapy.  According to the staff at the gym…… Dr “Butt-head” liked what he saw in the “Lokomat” machine and immediately started to refer his patients to use the devise.  In the meantime…….I continued to struggle along in his Fampridine-SR study.

Never once was I informed by Dr “Butt-head” that I would be a prime candidate for the “Lokomat” machine.  I guess I was too valuable of a “Human LAB RAT” for him and his study.  He had known of my strong desire to improve my walking ability and he failed to mention his new discovery to me the whole time. 

 

After bone marrow aspiration on July 2009 I informed Dr “Butt-head”’s staff of my return from Israel.  Dr “Butt-head” and his staff allowed me to continue in the study right up to the point of me returning for the stem cell transplant in September 2009.

 

Dr “Butt-head” met w/ me upon my exit of the study and wished me luck in the future and to contact him if I needed anything.  He still failed to mention the Lokomat therapy as he was kicking me to the curb along with the Fampridine-SR study.  Dr “Butt-head” was still concerned of the Israeli stem cell validity and saw that my walking that paticular day in his office was extremely poor.  We met for about twenty minutes.  After our meeting, he had one of his assitances wheel me to the parking lot w/ a wheelchair.  My walking was very poor that day.  STILL NO MENTION OF THE LOKOMAT MACHINE!!!!!

 

I now had a new Neuro and a new institution that backed what I was doing 100%. My new Neuro validated the stem cell protocol and informed me of “Lokomat” therapy during my first visit. They also imediately gave me a persciption for 4-AP,….to continue the dosing that I had been doing w/Fampridine the last 1.75 years (remember: 4-AP is Fampridine)

 

Questions:

–         Why didn’t Dr “Butt-head” inform me of “Lokomat” therapy when he learned of it in April 2009? 

 

–         Did Dr “Butt-head” know that my participation w/ Lokomat would disqualify me from participating in the Fampridine-SR study?

 

–         Why did Dr “Butt-head” try to discourage me from a stem cell transplant?

 

–         Did Dr “Butt-head” know that my participation w/ Stem Cell would disqualify me from participating in the Fampridine-SR study?

 

–         Why didn’t Dr “Butt-head” inform me of “Lokomat” therapy once he dismissed me from the “Fampridine-SR study in September 2009? After seeing him for 1 year 10 months……..he must have known that I was a prime candidate……but he still said nothing.

 

–         Why did Dr “Butt-head” tell me to contact him if I ever need anything in September 2009?  Didn’t he realize that he had failed to provide me w/ what I really needed for the last 4 months?

 

–         Did he really think I was stupid enough not to figure it all out?

 

 

In business they say that “Time is money”

In the case of: “This MS patient”…….. “Time lost is Mobility”

Thanks for dipping into my very valuable mobility reserves Dr “Butt-head”.  Your silence may just be the biggest crime of all.

Thanks guys for letting me get this off my chest.  I know Dr “Butt-head” understands.

Even the most selfish MS neurologists know that stress is something that their patients must learn to let go.

 

Done.

 

Be Well

Todd

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