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.

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.

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.

Sincerely,  

Will Kostelecky

Month 7 - Need to Rename Blog

The name of this blog is obviously not accurate at this point.   I was hoping to blog about a positive result and that has just not been the case.  So the first question is whether to blog at all?  My rate of entries has gone way down but I am still adding the occasional article so I guess I will keep posting as the mood strikes me.

So what to call the blog?  Maybe just Fighting MS.

I am still going to try to be open in my posts but the high likely hood is that I will not tell all.  Some things are just too hard to talk about.  Some of the things that I may mention might also be upsetting to some readers.  I dunno.  We will see.

Month 7 - Everything in Slow Motion

I used to be in a hurry.  Not sure I knew why at times but in a hurry.   I still feel that urge, which is really strange because I am retired and while I am busy there is nothing that I am doing that requires me to hurry!

Unfortunately even if I did need to hurry I could not.   I guess this is relative.  There is my normal pace which varies from slow to really slow so I guess on a really slow day a hurry could be just slow? I don't mean just walking either.

There were times on business travel where I could wake up, take a shower, dress, and be in the hotel lobby in 10-15 minutes.  This was usually when I had gotten a call from my boss who was in the lobby ready to go and asking where the hell I was so there was a sense of urgency!

Now taking a shower is 45 minutes to hour experience with an hour or two to recover from the heat.  Everything in slow motion from getting undressed, to getting in the shower, to showering, and then given the impact of the heat, down to extra slow motion for the getting out of the shower, dried, and dressed.  Frustrating but what can you do?

Month 7 - MS and Cancer

Everyone knows someone that either has cancer, had cancer and survived, or had cancer and did not survive.  With one in five people destined to have cancer in their lifetime the odds make it at least somewhat likely that the reader may face, or have already faced, the disease.

These numbers make it obvious why cancer research gets the attention that it gets.  Luckily there has been some spin-off from that research to the field of MS treatment.  The drug Alemtuzumab being an example (whether it worked for me or not)!

I can imagine a scenario where it was first realized that Alemtuzumab might help with MS.  Maybe this is far fetched and whimsical but here is what I would like to think may have happened.

Imagine someone with that is already suffering from MS getting the news that they have cancer.  As if things were not already bad enough they have a possible death sentence on top of a death sentence.  I would like to imagine that they are pretty severely impacted by the MS, severe difficulty walking, if they are not already in a wheelchair.   Part of the treatment that they get for their cancer is Alemtuzumab.  They have to be pretty depressed at this point!

Now in order for my story to have the ending that I want it to have they have to get the news that post treatment scans have indicated that their cancer is in remission.   Imaging the surprise of all involved, however, then the MS suffering cancer patient walks into their appointment to get this news rather than having to be wheeled in!

I know it probably did not happen like this but it could have....

Month 7 - Met an Alemtuzumab Miracle

Last week I was in Charing Cross for a follow-up appointment with my Neuro and visited the MS day ward to get my monthly blood test done.   While I was there I met a young woman that was one of the first MS patients in the UK to get Alemtuzumab. 

When she got the treatment a couple of years ago she was in a wheel chair and was not able to work.  She now walks quite well though still uses a cane for balance and is back at work.  This is what I was hoping for as a best case.  Well, not the work part, the walking part!

Unfortunately it does not seem that the treatment has had any impact and it really should have shown its face of improvement by now if there was to be any.  What I am seeing instead is continued disease progression.

The visit to the neurologist did not provide any positive light.   The scans show no new damage to my mylin (in the form of lesions) yet the disease has progressed.   It seems there are two flavours of MS...one that shows as lesions and one that does not.   The former is the one that responds well to treatments such as Alemtuzumab and the stem cell regimen that I was hoping might be a final chance.   The one that I seem to have is not so cooperative.

The next step is a PET scan to see if there are lesions that are being missed and a consultation with another neurologist for a second opinion.   The NHS is doing what they can.  I guess it is just a matter of hoping for the best.