The whole "Event Horizon" idea is a good way to describe my fight with the disease. My orbit around the black hole that is MS is one that is constantly decaying but it is not a stable picture perfect round or even concentric orbit. Rather it is as if I were being shunted in and out tho the ins inevitably win.
The beginning of this week found my orbit doing very well indeed! I try to spend as much time as possible on my crutches rather than in the chair and for a couple of days I was up and about on the crutches far more than in the chair. No idea what or why but I will take it. Then for the past couple of days back to normal but not further decayed, just back to what ever the last normal was. As if that makes any sense.
I am now due for my second course of the Clabridine Treatment that I started earlier this year. Given that I have not felt a lot of positive impact from the first course, in fact no impact at all, I did ask the medical team at Barts for some assurances that we are doing the right thing. The bottom line is yes as there are not a whole lot of options, the treatment was tolerated well, and there is still a chance of it being effective. Did learn of a phenomenon called “therapeutic lag”; i.e. you treat today, but the effect needs 2-3 years to become apparent. So I want some of that. I just hope that the lag stops lagging before I cross the boundary of the event horizon.
Friday, December 1, 2017
Wednesday, September 20, 2017
Approaching my Personal "Event Horizon"
In general relativity, an event horizon is a boundary in spacetime beyond which events cannot affect an outside observer. In layman's terms, it is defined as the shell of "points of no return", i.e., the points at which the gravitational pull becomes so great as to make escape impossible, even for light.
I think Wikipedia is a great thing. But the above is general relativity what does it have to do with me? Well picture me as an object being inexorably drawn into the black hole. Replace the black hole with MS. Get the picture? I am not at the point of no return yet. I am hoping that we can find some way to steer off the course that sucks me past the event horizon...but...it is approaching fast.
The Claridine treatment has had no effect. Two pretty drastic treatments have now failed me and there are not a lot of options left. There is, supposedly, a new drug that may be effective on Primary and Secondary Progressive MS and hopefully next week I can learn more when I see my neurologist in London.
In the meantime the bad days are getting worse and the good days are not so hot. Taking a shower takes an hour. Getting out of bed an hour. Getting into bed a speedy 45 minutes. I can still walk around the house if just barely and not all the time. A wheelchair is a constant companion. What is more worrying is the development of significant weakness in my arms and hands. Loss of my hands would be that event horizon.
I think Wikipedia is a great thing. But the above is general relativity what does it have to do with me? Well picture me as an object being inexorably drawn into the black hole. Replace the black hole with MS. Get the picture? I am not at the point of no return yet. I am hoping that we can find some way to steer off the course that sucks me past the event horizon...but...it is approaching fast.
The Claridine treatment has had no effect. Two pretty drastic treatments have now failed me and there are not a lot of options left. There is, supposedly, a new drug that may be effective on Primary and Secondary Progressive MS and hopefully next week I can learn more when I see my neurologist in London.
In the meantime the bad days are getting worse and the good days are not so hot. Taking a shower takes an hour. Getting out of bed an hour. Getting into bed a speedy 45 minutes. I can still walk around the house if just barely and not all the time. A wheelchair is a constant companion. What is more worrying is the development of significant weakness in my arms and hands. Loss of my hands would be that event horizon.
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 (like the browser cookie law) 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.
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 (like the browser cookie law) 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.
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!
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.
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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.
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