Tuesday, September 22, 2015

Month 8 - Wasted Day - Diminished Options

So I spend a day in London, with most of that in a tube for scans, only to find out that my body chemistry is, after all, NOT compatible with the tracers used for PET scans.   In other words, the scan was a waste of time.

They had done a blood test to ensure that I was good to go but the verbal result and the written result apparently did not match.   It was, obviously, the written result that corroborates with the scan not working.  Bummer.

I still have not heard from the doctor that I am to see for another opinion as to possible courses forward.   I guess I need to do some more nagging.

Thursday, September 17, 2015

Month 8 - PET Scan...Long Day with Crazy Ending

I spent the day in Hammersmith getting a PET scan yesterday.  I am getting this with the support of my Neuro's but am doing so as part of a study on the use of PET scans in diagnosing and treating MS.   This is great for me as the study paid for transport into London AND even gave me some money for my trouble (for a test that I wanted done and would have gladly paid for transport)!

It was also nice in that the test was done at a private facility and their version of the traditional hospital gown was fab!

Got to the hospital early for 0900 start.  Blood work, some other tests, into the PET scanner at 1000 for a 90 minute test.  Slept most of it.

Out of the tube for lunch, did a cognitive/memory test that I failed.  My memory for drawing a page full of shapes that I saw for 10 seconds was not good.  MS, age, impending dementia, or just a crappy memory?

Was able to move the MRI scan (part of the study) up in the schedule in hopes of beating some of the traffic out of the city.   Did one more questionnaire, this one with a mental health focus.  This is where things got interesting.

Got into and out of the MRI.  Slept through much of this one as well.  Nothing better to do.  Have had so many that am used to the noise.   Got back to the room I had been assigned, changed back into street clothes, and then started to head for the door.   Was intercepted by the doctor that was running the tests and asked if he could have a few minutes for close-out.  Was escorted to the staff lounge.

Proceeded to wait for thirty minutes with my mood progressing from optimism at beating traffic, to irritation, to anger.  I don't get angry very often but I was getting there.   Sent two nurses looking for the doctor with urgent message that unless it validated the study my ass was getting out of there!  Was told to please wait.

Finally in comes my doctor with another doctor.  My first thought was that this was the lead for the study but he was dressed in jeans which would have surprised me.  Then I noticed that he was holding my mental health questionnaire.   His introduction as a shrink and my realization of the possible interpretation of a couple questions on my coincided!

The questionnaire was all about depression.  My score indicated that I might be a little depressed but not at the level of "clinical depression" where treatment is needed.  In my opinion I would be surprised if anyone with a progressive, incurable, and ultimately fatal disease would not be depressed but I digress.

The question that got the attention, that I should have explained to the doctor but did not in my haste to beat traffic, related to suicide.  I strongly believe that patients with a terminal illness should be able to opt for a doctor assisted suicide.   I was disappointed when the UK rejected this concept recently but am happy that Dignitas, located in Switzerland, provides this service.

I am hoping for the best in terms of treatment for my disease but I am also preparing for the worst.  If you read through the EDSS chart that I posted earlier you can see that at some point it is very likely that my quality of life will have reached a point where it will be time for me to exit stage left.  I have joined Dignitas and will be working through the process to be prepared for this point should it come.

My answer to the question on suicide should have included the above explanation.  In absence of that my checking the box that said I occasionally think of suicide triggered the intervention process that required a screen by the resident psychologist!

This was something out of an episode of Holby City or Casualty.  I am sure that all the staff knew why I was in the "holding pen" and probably would have tackled me if I had tried to escape.  Not that a guy with advanced MS riding a scooter and carrying two crutches was going to be much of a tackle.

I recognize that choice in this matter is one that causes great angst and debate.  Some may believe that there is never a time when one should be able to take a life...even their own.  I respect that belief but do not share it.  Hopefully if someone on the other side of the coin reads this they can respect my position even if they object to it strenuously.

Tuesday, September 15, 2015

Month 8 - Next Steps

Well the letter to my doctors seemed to have helped with one of my two next steps.  Tomorrow I am scheduled for a PET scan to help determine where the disease is attacking my nervous system.   I am not totally sure what this information will help in terms of treatment options but I will hope for the best.

Interestingly the test is part of a clinical trial so expenses for getting in and out of London are paid for by the trial.   The procedure is an all day one given that I have to have both an MRI and the PET scans.  I am not claustrophobic but spending almost three hours in a tube does not sound like fun.

Tuesday, September 1, 2015

Month 8 - Letter to My Doctors

Doctors Scalfari and Nicholas:

I hope that your summers have gone well.   Hard to believe that it is already the end of August already.  Even harder to believe that it has been six months since I was in Charing Cross for the Alemtuzumab treatment that as of my last appointment with Dr. Scalfari seems, unfortunately, to have been ineffective.

It is interesting that my most recent MRI is not showing signs of new lesions as the disease is most certainly progressing, and progressing somewhat rapidly.  All of my existing impairments have continued to worsen, right leg in particular, but also lack of balance, right eye vision disturbances, and fatigue.  Added to this in the past months has been weakness in my left leg, my right arm, and significant tingling and weakness in both hands though my right is worse than my left.  The impairment of my hands is something that was very intermittent but is now constant.  As an example of progression, it is increasingly difficult for me to get up from bed unassisted…or from the couch for that matter.

I feel that my decline  is accelerating and that the trend is not a good one!   It took 2001 until 2011 to move from EDSS Scale 1 to 4 and from 2012 until 2014 to move from 4 to 6.   Now in six months I have moved from 6 to the top of 6.5.  It is not hard to map this rate of progression against the rest of the EDSS scale and be very concerned. 

With this being my current state of affairs I wonder if:

  • First, given the rate of my decline can we expedite the next steps (PET Scan and second opinion) that we discussed in our last meeting?
  • Second, if we do deem the Alemtuzumab to have been ineffective, is there anything(!) else that we can do to slow disease progression (NHS or private)?
I am getting desperate to save any amount of function as my quality of life is declining quickly.  I recognize that my case presents a challenge but appreciate any help that you can render.

I look forward to seeing Dr. Scalfari in October.  I do appreciate the help that I have gotten thus far and am hopeful for any possible assistance on the above.


Will Kostelecky