Friday, March 3, 2017

Completed Clabridine Treatment

I got the final injection of Clabridine yesterday.  A blood test done last week indicated that my immune system had been whacked pretty hard but was still active enough to need another smack on the head.  Dosages for this second treatment are determined by lymphocyte levels with a range of injections from none to another set across three days.  I only needed the one day.

While I was at the hospital I talked about my worsening condition in light of an immune system that was measurably compromised.  I got what I hope is good news in that the anti-viral drug that I am taking as part of the therapy can cause a temporary worsening of symptoms.   I hope this is the case. As in sincerely hope!

A couple of side notes.  First on Brexit and the NHS.  My primary neuro is Italian.  The nurse that injected me is French.   The Lead Nurse that is running the program is Spanish.  There is ludicrosity that comes out of the EU but there are a lot of benefits as well.

My disease and the meds that I use to manage symptoms have robbed me of my ability to drive.  This has resulted in my not having a fancy car parked out front costing me money as I now have a relationship with a young (compared to me anyway) taxi driver that has also become a friend over the years we have been driving into London together.  I have to be man handled into the car and Jimmy is always happy to help me.  I pay him well for his service as it is his income and he does a great job but he also goes out of his way for me.  I know that if I needed to call him for help in an emergency that he would be there for me.  During a long day at the hospital it has not been unusual for him to show up with lunch for me.  His wife has also sent us home cooked meals and she does a particularly good curry.  You might expect her to do a nice curry as Jimmy is a nickname and his real name is Zamir Sabbir and he is a devote Muslim.  When he is not keeping me company, or fetching me a lunch, you might find him in the prayer room of the hospital or in the mosque down the road.  Zamir represents mainstream Islamic Culture in a very positive light.  Sure there are radical members of the faith.  Just as there are from every faith.  Zamir is as appalled by the terror as anyone.  He sees nothing in the Koran that supports the terror and he reads it a lot.  Worth thinking about in my opinion.

Monday, February 20, 2017

Part Way Through Clabridine Treatment

Am partway through the Clabridine treatment.  The first set of injections, two injections each of three days, was done four weeks ago and next week we will do another set.  A blood test today will determine the dosages for next week.  Depending on the status of my immune system I will get anywhere from no injections to a full set across another three days.

I have mixed feelings.  I really do not enjoy the trip into the City for this treatment...but...I am hoping that my immune system is still cranking pretty well.  The reason I say that being that my symptoms have continued to advance even over the past weeks.   It is a little worrisome.  Everything is a little worse but most profoundly the over levels of fatigue when I move and the developing weakness in my hands and arms.

On the good news front, and this is questionably the worst good news that some will have ever heard, I have been provisionally approved by Dignitas.  Basically, that means that I can be assured that when the time comes I can choose to end my life rather than be trapped inside a body that no longer functions.  That is good news of a sort.

Thursday, January 19, 2017

New Year New Treatments

The start of the new year has me trying two new treatments.  

The first is medical marijuana which is prescribed for muscle spasms, stiffness, and for pain (though this is not one of my complaints).  I have just started taking it so am not sure how it is working.  It is only available on a private prescription and it is not cheap.  I think that I would be better off financially if I bought a bag of the real stuff.  At least I would get stoned out of the expense.

The above is only a treatment for symptoms but there is also the hope that it might have a positive effect on the nervous system and its ability to repair itself.  There is at least one trial being run with this as the experiment.  I figured it was worth a try for either reason.

https://www.mssociety.org.uk/cannabis

The other treatment is similar to the one that I started this blog with in that it is an immune system suppressor that is less toxic, and therefore better tolerated, than the Lemtrada which was decidedly NOT well tolerated two years ago.   This one is injected over three days, and then again a month later,  and then again in a year.  There are a fair number of potentially scary side effects but there are not a lot of other alternatives for my disease so here we go again!

https://www.mssociety.org.uk/cladribine

My treatment started with some screening blood tests and then yesterday an MRI and a Lumbar Puncture to document my baseline.  I also got the first injection yesterday, the second today, and the third will be tomorrow.   The bad news is that this treatment is only offered at the Royal London Hospital which is all the way into the City of London.  Hour and a half each way with normal traffic, two or more with rush hour traffic.  Painful.

Lastly, and not exactly a treatment, but I have finally completed the application process for Dignitas in case all of this fighting MS does not work.   It has been a bit of a grueling process to assemble all the documentation that is required but finally we got there.   Getting doctors reports that included a prognosis that would support an end of life decision was decidedly difficult.  My doctors would tell me that they would support me but I never felt like their hearts were in the game.

Note to the religious right.  I get the whole sanctity of life thing.  If you want to protect yours feel free.  Leave me to deal with mine though.  It is my bleeding life!

Thursday, December 15, 2016

Current Status

My current status is pretty much summed up by the medical report that precedes this post.  Not so good.  Have just had a pretty bad relapse that has taken me that much closer to being in a wheel chair. This on the heels of a fairly heavy programme of supplements and diet management.  So much for that hope!

Current Medical Report

What follows is NOT an actual medical report but rather a construction that I was hoping my doctor would use for such a letter. There seems to be some reluctance to help me with this process...which I can understand if that is truly the case. Right up to the point where it occurs to me that it is my damn life!

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Our mutual patient, Mr. Kostelecky, has requested that I provide you and he with a medical report in regards to his Multiple Sclerosis that contains substantial information about its diagnosis, history/development of the disease, treatments to date, current level of suffering, and finally a prognosis.

Diagnosis

According to medical transcripts Mr.Kostelecky was first diagnosed with Relapsing Remitting Multiple Sclerosis in 2000 by a Dr. Genut in the United States.  When I first saw him in May of 2012 he was relatively stable with some secondary progression and an EDSS of 5.5 to 6.  He is currently continuing a somewhat more rapid secondary progression and now has an EDSS of 6.5 approaching 7.

History and Development of the Disease

According to transcripts from Dr. Genut our patient first developed symptoms consistent with Optic Neuritis in 1995.  In 2000 he was formally diagnosed with Multiple Sclerosis and in 2002 he suffered his first muscular relapse with a significant weakening of his right ankle.

By 2011, when he moved to the United Kingdom he had advanced to an EDSS of 4.5 to 5 using a cane to walk shorter distance and a powered scooter for longer.  As stated above when I first saw Mr. Kostelecky in May of 2012 he had suffered ongoing secondary progression and was at an EDSS of 5.5 to 6.

I saw Mr. Kostelecky on the 04/12/2016 he had further advanced to an EDSS of 6.5 approaching 7.  He constantly requires crutches for any walking and has episodes when he struggles even with crutches.  He fatigues easily and suffers constant urinary incontinence.  Balance is severely compromised and vision in his right eye is increasingly impacted as well with some periods of disturbed vision lasting hours.  He has indicated that transition from bed in the morning is also becoming increasingly difficult.  Most worrying to Mr. Kostelecky is the development of significant weakness of his arms and hands with the right being worse than the left.

Treatments to Date

When first diagnosed Mr. Kostelecky was treated with Avonex and then moved to Copaxone for ease of self injection.  He was briefly off the Copaxone and moved to Fingolimod in 2011 but felt worse on taking it and moved back to Copaxone.

On moving to the UK he stopped the Copaxone in order to participate in the Ascend Trial for Tysabri.  He developed some side effects, without apparent benefits and withdrew from the trial after a little more than a year.

In early 2015 Mr. Kostelecky had five infusions of Alemtuzumab in an attempt to slow the immune systems attacks on his mylen.  There was some skin reaction, which is not unusual.  His admission for treatment was prolonged, however, due to some blood abnormalities which were worrying but stabilized and allowed treatment to resume.  Routine blood and urine analysis continues for tracking purposes.

Mr. Kostelecky does not feel that the Alemtuzumab had any positive effect.  In fact he feels that he left the treatment with more of a disability than when he entered given that he moved from being able to use a single cane some of the time to needing crutches at all times.  He has declined a second course of Alemtuzumab for this reason.
Mr. Kostelecky has also had a number of steroid infusions over the past years in an attempt to stabilize him after a relapse.  He is unsure of the net benefit of these infusions, one of which was administered the first week of December in 2016.  He will typically feel much better right after the infusion but will then degrade back to at or near where he was prior to the steroid being administered.

Early next year Mr. Kostelecky will be treated using an off-label drug Clabridine on a compassionate basis by The Royal London Hospital.  This drug acts in a similar manner to Alemtuzumab but is better tolerated.  It will be administered as three injections over three days and then, like Alemtuzumab, will be followed up in 12 months with a second treatment.

Current Level of Suffering

Mr. Kostelecky recognizes that he is lucky not to be experiencing any significant level of physical pain at this stage of his disease progression.  He does suffer from severe cramping and muscle spasms and is extremely stiff in the morning and whenever moving after having been still for a period of time.

Prognosis

There is no certain prognosis for Mr. Kostelecky as we hope that either treatment by Cladribine is of help or, somewhat more wishfully, that the disease burns itself out on its own accord.  Though the latter is rare it is a possibility.

Mr. Kostelecky’s understandable concern revolves around the disease progression continuing.  If it does at the same pace as he has recently been experiencing he will be moving towards a point in time where he is left unable to care for himself nor to do any of the things that lend his life quality.  This would be around an EDSS score of 8 to 8.5 which could be reached within one to three years.  

Monday, August 22, 2016

Scientific Method be Gone Here

Am taking a more rigorous, and enthusiastic, approach to diet give that it is one of the few avenues open to me.  Have retained the services of a nutritionist and have made some changes based on her advice...at least one pice of which most of our mothers would have advised.  The latter being "Eat Your Vegetables!".  In support of this latter decree we have gotten a nutribullet to augment my normal meals with a veggie smoothie every day.

The nutritionist has also started me on a regime of supplements (including mushroom therapy) designed to fight inflammation and we have done a food intolerance test.  The food intolerance test came back with three foods that caused a distinct reaction (cow's milk, yeast, goats milk)  and three that caused a moderate reaction (gluten, egg yolks, zinfandel grapes).

We have not met yet to discuss the results of the food intolerance test but I have cut all dairy products from my diet.  Goats milk was not an issue!  Yeast is a whole 'nuther matter as it is in everything.   Will have to talk about this one.   Our goal is to try to adhere to a diet that completely avoids some or all of the intolerance items for some amount of time in which results should be noticeable.

Here it becomes obvious that scientific method has gone out the window.   We have a change of diet to include more vegetables, two streams of supplements, and avoidance of multiple food groups.   Oh well.

Monday, August 1, 2016

Thinking About my Life and MS - Era 6 - 2012 to ----

The previous episode of this series did not actually mention MS other than the diagnosis.  In reality the disease progressed through the entire period as can be read elsewhere on this blog.  By the end of that "era" I was walking with a noticeable limp and starting to use a cane.   Unfortunately the this era, from the point where we moved to the UK, is all about the disease and its progression.

We moved over in August of 2012 and rented a nice flat on the Thames in the town of Maidenhead.  My wife knew the area that she wanted to live in and Maidenhead was a good place to start a home search.  As I start to write this entry it has occurred to me that I really did not talk about what I did with myself when I left Black & Decker post their acquisition.  While still in Baltimore I did look for a job for a while before deciding to just retire.  Early retirement had always been the plan, this made it happen a bit earlier than planned but that was ok as well.  I decided to try and retool my self back to the dawn of my career and developed a couple of websites.  One for photography and one that was a development tool.  I think they were both good ideas but the idea of selling and marketing things bores me.

When we moved to the UK I got interested in micro electronics and started developing software for the Arduino and for the Raspberry Pi.   My test platform was a robot that trundled around the floor of the apartment controlled by a Raspberry Pi integrated with an Arduino.   This led to a volunteer gig with the NHS to develop an instrument, based on the same technologies, to measure the recovery of heart disease patients.  This led to 3D Printing and all of the above can be found in another blog here!

After a little more than a year we did find a new home and after successfully navigating Englands home buying process we were able to take possession, redecorate the place from top to bottom, and move in.   The place did not have the spectacular view we had in Baltimore but it is on the Thames, has a beautiful garden, is large enough for our furniture (American), and most importantly has a man cave for me and my toys.

It is now going on five years that we have been here in England and things have been good though degrading on my health front.   Each year it is harder to do the things that I would like to be able to do.   When we first moved over we were able to explore the area restaurant scene, and we were able to travel to France a couple of times, as well as to Ireland, and to take a cruise down the west coast of Europe.  All of these trips, however, were constrained by the logistics of my disability and not what I had hoped for in all the years that I had thought about, and looked forward to, living in the UK.

We also lost my wife's father to cancer in the past year.  He had been fighting prostate cancer as long as I had known him but during that time it was in remission and he was able to lead a very good and active life.   I remember talking to him about our respective diseases on one of their first trips to see us in the States.   I told him, as I have told others, that I would rather have cancer than MS.  With cancer there is a chance that it is not going to kill you and even if it does in most cases you can lead a full life until close to the end.   With MS the progression of the disease is a constant drain from the quality of your life and the ability to enjoy that life.   We were both committed to making the most of the rest of our lives but I think that he was able to do a better job than I given the nature of our diseases.   His last year or so was painful and, of course, stressful for his family.  When the end did come it was a relief.  He did have a pretty darn good last ten years (before falling ill for that last stretch) as he and his wife were able to take four of five "trips of a life time"!

During this time my mother developed the first signs of dementia and the disease has progressed fairly rapidly.  She still remembers me but did forget who her husband was.  Ironic.  This may have been a good thing though as it did make his passing much less painful.

The rest of my story is all about the disease progression and is talked about in detail through the rest of this blog.  I came to the UK using a cane occasionally and am now using two crutches constantly and contemplating the transition to a wheel chair.    Weakness of my upper limbs has now become very noticeable and my hands are impacted as well.  I have failed to respond to some last ditch treatments and am not sure that I will make it long enough to take advantage of some new therapies on the horizon.  In the meantime these "Eras of Will" are part of the documentation package that I need to apply to Dignitas.