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!

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.


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.


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.