I'm just past the 4 month mark post HSCT. I feel progress in different ways. I have more days of decent typing dexterity, straighter walking and the all important and scientific study measuring how much of the bottom of my feet I can reach with my sponge in the shower... I bet you're all a bit surprised I'm capable of scientific experiments and about twice as surprised I use an exfoliator in the shower...Both are true.
Most days it's impossible to hide that something is amiss with my walking but I think I'm handling it better. Stairs continue to baffle me and there's no disguising I need to take them slow. If there's more than 2-3 I need a railing to get down safely. I have recently discovered peace in using a cane in public not only physically to support the inevitable missteps but psychologically to obviate my innate instinct to try with all my might to appear that I'm not defective. When I use a cane it's out there for all to see. I get a lot of stares and an occasional question about why I'm using a cane like yesterday at my son's game a parent asked me "did you get hurt or something?" with the emphasis on something. I gave the usual retort, some days my legs don't work so good.
The big question is whether the HSCT has improved my disease from pretransplant condition. The answer is, the jury's still out. I know I'm worse than I was in October 2011 but that was after I stopped Tysabri and I had further progression before HSCT in May. Last year at this time we were waiting to move into our house and we lived in a 2nd floor apartment. There were 20 steps to get up and down and I could get down without the railing consistently. I have an appointment in November with my Neurologist at which time I will go for a brain and C-spine MRI. The results will show if any additional lesions have appeared in the past year.
The most important aspect of my recovery is how close I am to stressful situations. It is amazing how even the slightest stress will immediately impact my ambulation, leading to more stress, leading to more physical problems...
That's all for now. I will update again after my MRI's in November.
Sunday, October 7, 2012
Friday, August 3, 2012
Day +73
During the research, application
and…waiting… stages for my HSCT treatment I read several blogs from people who
went through the procedure. I followed them closely absorbing every morsel of
technical knowledge while attempting to grasp the emotional nuances of going
through this difficult process. There’s a consistent theme in most of these
blogs that upon arrival back to their respective homes such as California, Texas,
Oregon, Australia and many parts of Europe, the postings drop off precipitously
and without warning.
I believed that when HSCT’ers arrived home they would begin to feel better and have more time to bloviate about their myelin, their recovery and any other inane topics they determine to be their zeitgeist. This doesn’t usually happen and blog after blog you see days turn into weeks and months between postings leaving us hanging on the edge of our seats to decide for ourselves whether their respective adventures were worth the effort! I promised myself that when I returned from Chicago I would continue to write with dedication and consistency to my tens of followers to keep them abreast on my strong recovery and recuperation.
I believed that when HSCT’ers arrived home they would begin to feel better and have more time to bloviate about their myelin, their recovery and any other inane topics they determine to be their zeitgeist. This doesn’t usually happen and blog after blog you see days turn into weeks and months between postings leaving us hanging on the edge of our seats to decide for ourselves whether their respective adventures were worth the effort! I promised myself that when I returned from Chicago I would continue to write with dedication and consistency to my tens of followers to keep them abreast on my strong recovery and recuperation.
Alas, on day approximately +73 since my transplant I have posted
only a few times since my arrival home and not once in the past 6 weeks.
Strange even to myself but true. So you ask, why have I been dragging my feet
leaving everyone hanging without the proper ending a story like this should
have??? Well, probably because I have been dragging my feet…literally.
The affects of chemotherapy have all but disappeared from my
body. Occasionally I’m overcome with waves of nausea but I think that’s usually
from my lack of attention to those all too important four words: “best if used
by ” in the refrigerator… After all, how can sour cream go bad??? Badaboom!
Seedlings of fuzzy hair are now visible on my still shiny head, my lab draws
are pretty normal including my WBC count which hovers around 3.5-3.8 (4-10 is
normal range) and those crazy chemo induced dreams are now replaced by good old
fashioned nightmares about work!! Work you say?? Yes indeedy, on July 16th
I returned to the office full time to prepare for the all-important Open
Enrollment season later this year blah, blah, blah. I truly can’t believe it
went by so fast. I believe it more today as I opened my pay check to see they
began deducting for some of the hours I was out. CEOs just don’t get away with
half the stuff we used to. Damn you Enron and Tyco! I was out a total of 52
work days and while I worked for most of that time from home there was still
plenty of time for rest and recovery and I'm grateful to my employer for
granting me this leave of absence.
I think the best explanation for the elongated delay between
postings was my eternal hope that tomorrow, or the day after the BIG
breakthrough would happen and I would post a video of me sprinting through the
streets. My friend Chad an HSCT’er from Oregon posted not long ago that he was
able to “run down the street” after his daughter. Those aren’t just words to
me, that thought slowly oozes through my mind like poured gravy on mashed
potatos (make your own joke here). Another blogger Andrew from Australia recently posted a video on our
FB group for fellow HSCT’ers showing him running in a park for the first time
in years. His clumsy strides one after another running no more than 20-30 yards
in all was emotional to watch. Over and over I watched him go, seeing me in his
shoes, understanding how demyelination affects muscles and therefore ligaments
and tendons as a result of decreased structural support.
That day for me is not today. It may be tomorrow or next week.
Today, while grateful for what I can do, I still yearn for what I could do
before, and in truth what others can do that I cannot. I have always yearned
for that which hangs beyond my reach. On one of Kurt Vonnegut’s birthdays late
in his life someone asked him if there was anything good about getting old and
I’m paraphrasing, he said it’s great to be able to walk down the street and not
want to bed every attractive woman I see. This is obviously not metaphor for me
because I'm a happily married man. However, with other non-women related topics there are some similarities that with age I'm more accepting and grateful for what I have. Mr.
Grace, Mr. Vonnegut was a friend of mine… You are no Kurt Vonnegut…
Anyway, enough nonsense and back to the matter at hand for the
2-3 people still reading this diatribe. My walking is as clumsy as ever. I still
use the cane occasionally but the support I receive having an extra “leg” to
lean on is often overshadowed by my inability to relate to my surroundings or
more precisely the people who inevitably stare at an otherwise normal looking
dude with no leg cast or brace to justify the walking stick. I feel very
uncomfortable drawing attention to myself and while the pretend therapist in my
mind (Looks more like Dr. Melfi from the Sopranos than Dr. Weston from In
Treatment) tells me constantly to block out everyone else and focus on myself,
I can’t avoid the stares and I frequently stare back with less than friendly
thoughts going through my mind (many of which include using my cane for less
than friendly purposes)
So there you have it. What’s new with me?? I can walk today. It
is painful to do and watch but I get my ass out of bed, into the shower and to
work to support my family as I will do for the next 25-30 years, yikeees! For
this I’m thankful to the good Lord above. Some days are better than others. Nights
are usually better as my symptoms are less pronounced. Two weeks ago Tuesday
there were a few hours in the evening I felt great and my walking was
effortless and without pain. An increasing number of people ask me what’s wrong
with me and why I am limping? I was at a meeting earlier this week with a high
powered shaker and mover in the insurance industry. I was pitching him to start
selling our insurance services through his agents and brokers. He was perplexed
by my bald head as it didn’t fit my body especially with the peach like fuzz
beginning to surface. When he walked me out he was further baffled as to why I
walk at half the pace as a normal New Yorker. As we shook hands at the door, it
was clear I didn’t make that sale, yet.
What will happen tomorrow??? Anyone’s guess. It is strange for
me to be on this side of the procedure because at this point there’s nothing
left to do but wait, take good care of myself and ask God to give me the
strength to execute his plan for me to the best of my ability. When MS
progressed last year this time I had more hope. Gilenya, the new medication I
began in October would be great for me! I would see HUGE improvement, but I
didn’t. Then I found HSCT and this would surely “stem the tide” on this
dastardly manipulation of the immune system, but it hasn’t, not yet. It’s a
strange emptiness not having the next best thing to look forward to. This has
not been lost on my wife who rides these waves with me. She’s in PR for a month
to visit with her family and for a well-deserved break from me (not necessarily
in that order). She comes back in a few
weeks, I hope…
Most of my family and friends have fallen off of my blog so
those that do read this post are probably either contemplating HSCT for
themselves or have a family member affected by MS and are considering this
treatment. Heed my words, this is not an easy procedure physically, emotionally
or financially. I read many postings on FB from those that are on the front
side of this procedure and they would give their right arm to be accepted into
one of the increasing number of facilities around the world performing HSCT for
MS and other autoimmune diseases. They have hope and sometimes hope skews
reality. Scientific studies and data show that this doesn’t work for everyone and
particularly for those who have had their particular flavor of autoimmune
disease for several years, like me. This IS the answer for some of us, it
greatly improves our condition in most of us but it’s not without a serious
toll on our lives for a long time. It’s too early to tell what the final result
of this treatment will be for me but I see more and more people grasping on to
this as THE answer.
That’s all for now. As an optimist by nature it’s difficult to
write a less than positive report but the purpose of sharing this experience
was to never sugar coat this process in any way. I still do believe I will run
again one day, maybe tomorrow...
Tuesday, June 19, 2012
Day + 29
Just a quick note to give an update on recovery. I have spoken to many MS'ers in the past couple of weeks who have received HSCT and have provided great support for what undoubtedly will be a longer than expected recovery.
On the positive side, the affects of the chemo on my bladder have subsided and this week for the first time in 2 months I slept the whole night without a pee run :))) Also my energy is almost back to pretransplant levels. Bea and I are up early each day and I put in a good day's work from home. Most days I'm down to one afternoon siesta for an hour or so which in truth most of us could use each day even without a stem cell transplant!
On the less positive side my walking is at a level worse than it was before the transplant. Most days I'm using a cane to get around or a shopping cart if I'm shopping. It's amazing how much easier it is to get around using a shopping cart. People can't even tell I walk with a limp. It gets a little uncomfortable when Bea piles the cases of water on top of me as I'm sitting in the cart at Whole Foods but I deal with it...
I have lost so much muscle in my legs that coordination and mobility in addition to the spasticity has made walking painful and just plain ugly. Arm and hand strength seem worse than before as well. Lastly, the L'hermitte's continues down my right leg particularly in the mornings. It's not as scary as when it first began a few weeks ago as I can kind of predict when it will hit. It still throws me off balance and I gasp with each bolt of lightning down my leg but it's more manageable.
I'm dealing with the slow recovery as best I can. Honestly I thought by now I would be ready to go back to work and moving a lot better not worse than I was before Chicago. Walking out to the field to my son's soccer practice today was a real challenge. It was only a few hundred yards but my body completely locks up making for a walking like motion similar to something out of a Frankenstein movie dragging my left leg along. After practice on the way back to the car Jose Miguel was kicking the ball down the field than running to it. It rolled in front of me and I clumsily kicked at it with my right foot. He said it looked like I had never kicked a ball in my life. There are moments that are incredibly maddening and make me want to scream but it doesn't change anything. I played soccer for 10 years and my son meant no disrespect... He was right.
MANY people I respect very much have told me it is not uncommon to experience a worsening of MS symptoms for 3 months or so. No matter how many times I tell myself this will hopefully be temporary it's still frustrating to have gone through this procedure only to be in my current condition. I'm still confident this was the right decision and I'm hopeful improvement begins soon.
Tomorrow I will buy the Nintendo Wii Fit as I understand this can help to build stability and strength. Also I will begin working out in our pool now that the temperature of the water has finally made it north of 70 degrees :))
Although my body is weak my resolve to fight with all the inner strength I have is not broken. I thank all of you who continue to pray and think of me.
On the positive side, the affects of the chemo on my bladder have subsided and this week for the first time in 2 months I slept the whole night without a pee run :))) Also my energy is almost back to pretransplant levels. Bea and I are up early each day and I put in a good day's work from home. Most days I'm down to one afternoon siesta for an hour or so which in truth most of us could use each day even without a stem cell transplant!
On the less positive side my walking is at a level worse than it was before the transplant. Most days I'm using a cane to get around or a shopping cart if I'm shopping. It's amazing how much easier it is to get around using a shopping cart. People can't even tell I walk with a limp. It gets a little uncomfortable when Bea piles the cases of water on top of me as I'm sitting in the cart at Whole Foods but I deal with it...
I have lost so much muscle in my legs that coordination and mobility in addition to the spasticity has made walking painful and just plain ugly. Arm and hand strength seem worse than before as well. Lastly, the L'hermitte's continues down my right leg particularly in the mornings. It's not as scary as when it first began a few weeks ago as I can kind of predict when it will hit. It still throws me off balance and I gasp with each bolt of lightning down my leg but it's more manageable.
I'm dealing with the slow recovery as best I can. Honestly I thought by now I would be ready to go back to work and moving a lot better not worse than I was before Chicago. Walking out to the field to my son's soccer practice today was a real challenge. It was only a few hundred yards but my body completely locks up making for a walking like motion similar to something out of a Frankenstein movie dragging my left leg along. After practice on the way back to the car Jose Miguel was kicking the ball down the field than running to it. It rolled in front of me and I clumsily kicked at it with my right foot. He said it looked like I had never kicked a ball in my life. There are moments that are incredibly maddening and make me want to scream but it doesn't change anything. I played soccer for 10 years and my son meant no disrespect... He was right.
MANY people I respect very much have told me it is not uncommon to experience a worsening of MS symptoms for 3 months or so. No matter how many times I tell myself this will hopefully be temporary it's still frustrating to have gone through this procedure only to be in my current condition. I'm still confident this was the right decision and I'm hopeful improvement begins soon.
Tomorrow I will buy the Nintendo Wii Fit as I understand this can help to build stability and strength. Also I will begin working out in our pool now that the temperature of the water has finally made it north of 70 degrees :))
Although my body is weak my resolve to fight with all the inner strength I have is not broken. I thank all of you who continue to pray and think of me.
Friday, June 8, 2012
Day + 18
The past few days have been interesting as the early strength and symptom improvement I experienced upon my return to NY has been followed by a few days where I feel like I did mid week last before my discharge from the hospital.
On Monday and Tuesday of this week I received 1G of IV Solumedrol each day to attempt to "cool" the L'hermitte's I was experiencing last weekend. This was very effective and today is the second day without any symptoms. The steroids created huge fluctuations in my blood counts which have made me extremely tired and weak. For the past two nights I have had ridiculous night sweats and my bladder is waking me every 2 hours like clock work. These same symptoms dominated most of my inpatient admission so I can assume my WBC is back down to a low level as it was while inpatient. One big positive difference is I have not had fever like last week so I'm able to walk around the house.
I'm resting all day today and this weekend. The truth is it's not hard to do as my energy is very low and my legs are very weak and stiff. I have lost so much muscle through this process. The weather is perfect and although I wish I were on the golf course or tennis court, resting in our yard with a cool breeze is not terrible.
Although I looked forward to a significant reduction in medications post transplant, this is not the case. For the next 12 months I need to take Acyclovir, Fluconazole and Bactrim because of my suppressed immunity in addition to the Baclofen, Pristiq, Detrol and Ampyra which treat symptoms of the MS. I think that's more pills than my 75 year old mother! The combination of all of these medications has me in a somewhat foggy state and a bad taste in my mouth always but I'm hopeful these will subside in the near future.
Great weekend to all!! NY will be sunny and warm :)) I need to get a little color on this body and head to stop scaring the neighborhood kids!
On Monday and Tuesday of this week I received 1G of IV Solumedrol each day to attempt to "cool" the L'hermitte's I was experiencing last weekend. This was very effective and today is the second day without any symptoms. The steroids created huge fluctuations in my blood counts which have made me extremely tired and weak. For the past two nights I have had ridiculous night sweats and my bladder is waking me every 2 hours like clock work. These same symptoms dominated most of my inpatient admission so I can assume my WBC is back down to a low level as it was while inpatient. One big positive difference is I have not had fever like last week so I'm able to walk around the house.
I'm resting all day today and this weekend. The truth is it's not hard to do as my energy is very low and my legs are very weak and stiff. I have lost so much muscle through this process. The weather is perfect and although I wish I were on the golf course or tennis court, resting in our yard with a cool breeze is not terrible.
Although I looked forward to a significant reduction in medications post transplant, this is not the case. For the next 12 months I need to take Acyclovir, Fluconazole and Bactrim because of my suppressed immunity in addition to the Baclofen, Pristiq, Detrol and Ampyra which treat symptoms of the MS. I think that's more pills than my 75 year old mother! The combination of all of these medications has me in a somewhat foggy state and a bad taste in my mouth always but I'm hopeful these will subside in the near future.
Great weekend to all!! NY will be sunny and warm :)) I need to get a little color on this body and head to stop scaring the neighborhood kids!
Wednesday, June 6, 2012
Day + 16
Good things come to those who wait. The events from over the weekend causing bothersome L'hermitte's symptoms have subsided significantly. My Neurologist in NY fit me in for an appointment on Monday afternoon and recommended 2 days of high dose steroids 1 gram of Solumedrol to cool me down. After confirming with Dr. Burt this was ok I received the steroids Monday and Tuesday. This round affected me more than usual assumably because of my suppressed immunity. The major symptoms of high dose steroids to me are agitation, insomnity and hiccups but they worked and today I have had a lot less attacks than the last 5 days!!!
After the infusion yesterday I went for the weekly lab draws for Chicago. I received a call today from one of Dr. Burt's nurses informing me Dr. Burt reviewed some of the results and my white blood count is 36!!! This is the same WBC count that for 10 days recently was <0.1 The normal maximum level for WBC is 13. She informed me this is probably because of the high dose steroids and it will normalize shortly. She advised it will probably increase my fatigue and she is correct. Bea and I still did some running around today but I am more tired than the last few days.
Today I broke down and went for the handicapped parking permit. I have resisted this for the last couple of years but reading posts from fellow MS'ers recently convinced me that this was nothing to be ashamed of. There was one post from someone who wrote "I'll give you my parking permit but you have to take my MS with it" I think that was the turning point for me. Bea and I got the paperwork together and the doctor's note and it was processed within 10 minutes :)) I can't wait for my first opportunity to race some 90 year old lady to the last handicapped spot at the mall!! Haha! In truth I will use it sparingly on days that I feel I need it (anyone buying that??)
As of 4:00 today our pool is officially open. It's a cool 72 degrees but it's blue and mostly clear! We ordered a solar pool cover which will be installed next week. Our pool has great sun exposure all day so I think it will be very effective.
It's actually nice not to have much to report. I'm settling into a good routine of working from home, getting some errands done and I will force myself to rest a good part of the day as well.
I have received some interesting messages recently from blog readers with great questions. This is why I wrote this so please keep them coming.
After the infusion yesterday I went for the weekly lab draws for Chicago. I received a call today from one of Dr. Burt's nurses informing me Dr. Burt reviewed some of the results and my white blood count is 36!!! This is the same WBC count that for 10 days recently was <0.1 The normal maximum level for WBC is 13. She informed me this is probably because of the high dose steroids and it will normalize shortly. She advised it will probably increase my fatigue and she is correct. Bea and I still did some running around today but I am more tired than the last few days.
Today I broke down and went for the handicapped parking permit. I have resisted this for the last couple of years but reading posts from fellow MS'ers recently convinced me that this was nothing to be ashamed of. There was one post from someone who wrote "I'll give you my parking permit but you have to take my MS with it" I think that was the turning point for me. Bea and I got the paperwork together and the doctor's note and it was processed within 10 minutes :)) I can't wait for my first opportunity to race some 90 year old lady to the last handicapped spot at the mall!! Haha! In truth I will use it sparingly on days that I feel I need it (anyone buying that??)
As of 4:00 today our pool is officially open. It's a cool 72 degrees but it's blue and mostly clear! We ordered a solar pool cover which will be installed next week. Our pool has great sun exposure all day so I think it will be very effective.
It's actually nice not to have much to report. I'm settling into a good routine of working from home, getting some errands done and I will force myself to rest a good part of the day as well.
I have received some interesting messages recently from blog readers with great questions. This is why I wrote this so please keep them coming.
Sunday, June 3, 2012
Day + 13
Well that didn't long! Back by popular demand from an early blogging retirement I will give you an update quicker than anticipated. Actually, there was no demand, at all, but there is an update that I will share with you.
Earlier in the week while in Chicago (or last week) depending if you consider Sunday the last or first day of the week (I'm still on the fence), I began experiencing a condition called L'hermitte's Sign which is defined as: Sudden transient electric-like shocks extending down the spine triggered by flexing the head forward. Due to a disorder such as compression of the cervical spine (the portion of the spinal cord within the neck).
The sign is named for a French neurologist, Jean Lhermitte (1877-1959) who originally described it in a patient with multiple sclerosis (MS). It is a classic sign of MS.
I can recall many years ago experiencing this for the first time. It was before my diagnosis and I had no idea what to think of these strange, painful sensations shooting down my arms and legs. I remember experiencing these most while driving and I was convinced there was a loose wire somewhere in my seat that was shocking me. This feeling is exactly like touching a live wire.
I have had Lhermitte's on and off since my diagnosis but in recent years the condition had lessened in its severity and frequency. During treatment in Chicago I felt it on a day I wasn't feeling great. I informed Dr. Burt and he responded Lhermitte's was not something he's seen related to HSCT.
This past Friday I had a few episodes in my right leg but by yesterday morning I was experiencing frequent, painful bursts of electricity down my right side through to my right foot. I was standing in the kitchen yesterday morning when an episode occurred so powerful I spilled my cup of coffee on the floor. Not only is it painful but it disrupts my equilibrium requiring me to reach for something to maintain my balance. I began to get vey anxious as this was the last thing I had expected and fears of a new and active MS lesion is my worst nightmare, particularly so soon. I emailed Dr. Burt and of course within 10 minutes he responded reiterating he has not seen this as a result of HSCT. He did ask me what medications I had stopped taking since treatment.
Last fall when I had found a Neurologist accepting my new health plan he prescribed for me a Selective Serotonin Reuptake Inhibitor (SSRI) or crazy pill as I call it. He said his MS patients react well to antidepressants reducing pain and also assisting with depression which is part of MS. I had never taken medicine for depression and was hesitant but truth be told it was a difficult period. My health was spiraling down, we had no house, we were living in a hotel, we had to change our son to a second new school since arriving to NY because we had to leave our apartment and in short, I was depressed. He prescribed Cymbalta and I rationalized it to say it would relieve the pain associate with MS... A few weeks later I manned up and took the mild dose on a Monday morning and went off to work. These are "time release" capsules. I remember around 12:30 in the afternoon I was in a meeting with my sales management and, it released. I felt immediate anxiety at a very high level. Some of these medications make your symptoms worse for a period before improvement is seen, this apparently was one of them. I was one and done with Cymbalta and felt the effects for a few days after. A month or so later I tried another flavor of SSRI because I still had "pain". I tried Pristiq at a very low level and my body tolerated it well and after a few weeks of slightly elevated anxiety I felt better. Of course by this time our lives had settled considerably domestically as we were in our home, the kids were happy in school and as the saying goes "happy wife, happy life". I didn't see a huge benefit from the Pristiq and looked forward to stopping after HSCT when I had time away from work to absorb the side effects of coming off an SSRI. During my hospital stay I was taking so many pills in addition to IV treatment I just started skipping days of Pristiq. So Dr. Burt, I stopped taking Pristiq.
Mom and Dad were packing up yesterday morning and sadly my goodbye and thank you was brief and not nearly sufficient for how much they helped over the past several weeks as I headed upstairs to rest in bed hoping this would stop. I rested for a few hours and the episodes reduced in frequency.
Matthew had a soccer game in the afternoon so off we went. It was great to be outside in the sunshine. I took my cane to assist when the episodes hit my leg which were not infrequent. Matt's team won 4-2 and coincidentally one of my cousin Tom's sons was refereeing Matt's game and the other son was playing on the adjacent field. It was nice to spend time with him and my aunt and uncle who came to watch Conner's game.
I slept very well last night as my routine is normalizing and my body is clearing from toxicity. This morning I awoke and carefully walked around and downstairs trying to avoid leg problems. Within an hour the L'hermitte's attacked hard and fast. What is normally predictable based on the movement of my neck and the consequential strain on my spinal cord was now random, frequent and painful not to mention scary. I was having them every 5 minutes or so.
This entire post is pretty negative BUT in the spirit of maintaining some positive note to each update here it is. Because I knew it was L'hermitte's I looked it up on the Internet to learn more. Within the first paragraph it says this can be caused from MS (we knew that) but it also could occur during or after chemotherapy or upon sudden discontinuation of SSRI!!
This obviously elated me as two of the potential causes for this were recent, identifiable and not a probable new MS lesion or exacerbation!! The only better news I could have read would be that these are guaranteed to stop within a short period followed by several years of increased sexual performance! Sadly they were both missing.
Dr. Burt sent me an email today to see how I was feeling. I responded that the episodes are more severe and frequent in the morning but less in the afternoon. I told him what I read on Wikipedia regarding the correlation of chemotherapy, SSRI sudden discontinuation and L'hermitte's. Based on all I have described about Dr. Burt to you thus far, how do you think he would respond to me self diagnosing based on Wikipedia??? Yep, you guessed it, Poppycock! He actually told me earlier in the week about the SSRI discontination potential but completely discounted the potential correlation with chemotherapy. He said he's well aware of the correlation between the two but not with the chemo drugs he uses for autoimmune disease... Ok, I'm in no position to question the wizard.
He asked me to page him. When we spoke he told me he has never seen this before and he thinks it could be the SSRI issue. He told me he did research today whether L'hermitte's could be "some sort of weird pathway to PML based on my Tysabri, Gilenya history". Those of us in the MS world cringe when we hear any mention of Progressive Multifocal Leukoencephalopathy (PML) from a physician. This is a rare and progressive neurological disease. I know what you're thinking, don't you already have a rare and progressive neurological disease?? Yes I do but this one is MS on steroids. PML is fatal in about 50% of cases and causes rapid, severe and permanent disability in the unlucky half. The good news is he didn't find any connection between the two. I asked him if I should get an MRI and he didn't recommend it at this time but to keep him posted. Again, kudos to his amazing dedication to his patients reaching out to me on a Sunday, researching the issue and then initiating a phone call? Unheard of.
While I didn't anticipate posting so soon after announcing my slow down, I managed quite the recap of just two days. In truth I wasn't planning to slow down the posts so quickly I was just a little annoyed because my readership was dropping like a rock in China (I receive stats of readership by country daily) and I was getting frustrated (joke).
Earlier in the week while in Chicago (or last week) depending if you consider Sunday the last or first day of the week (I'm still on the fence), I began experiencing a condition called L'hermitte's Sign which is defined as: Sudden transient electric-like shocks extending down the spine triggered by flexing the head forward. Due to a disorder such as compression of the cervical spine (the portion of the spinal cord within the neck).
The sign is named for a French neurologist, Jean Lhermitte (1877-1959) who originally described it in a patient with multiple sclerosis (MS). It is a classic sign of MS.
I can recall many years ago experiencing this for the first time. It was before my diagnosis and I had no idea what to think of these strange, painful sensations shooting down my arms and legs. I remember experiencing these most while driving and I was convinced there was a loose wire somewhere in my seat that was shocking me. This feeling is exactly like touching a live wire.
I have had Lhermitte's on and off since my diagnosis but in recent years the condition had lessened in its severity and frequency. During treatment in Chicago I felt it on a day I wasn't feeling great. I informed Dr. Burt and he responded Lhermitte's was not something he's seen related to HSCT.
This past Friday I had a few episodes in my right leg but by yesterday morning I was experiencing frequent, painful bursts of electricity down my right side through to my right foot. I was standing in the kitchen yesterday morning when an episode occurred so powerful I spilled my cup of coffee on the floor. Not only is it painful but it disrupts my equilibrium requiring me to reach for something to maintain my balance. I began to get vey anxious as this was the last thing I had expected and fears of a new and active MS lesion is my worst nightmare, particularly so soon. I emailed Dr. Burt and of course within 10 minutes he responded reiterating he has not seen this as a result of HSCT. He did ask me what medications I had stopped taking since treatment.
Last fall when I had found a Neurologist accepting my new health plan he prescribed for me a Selective Serotonin Reuptake Inhibitor (SSRI) or crazy pill as I call it. He said his MS patients react well to antidepressants reducing pain and also assisting with depression which is part of MS. I had never taken medicine for depression and was hesitant but truth be told it was a difficult period. My health was spiraling down, we had no house, we were living in a hotel, we had to change our son to a second new school since arriving to NY because we had to leave our apartment and in short, I was depressed. He prescribed Cymbalta and I rationalized it to say it would relieve the pain associate with MS... A few weeks later I manned up and took the mild dose on a Monday morning and went off to work. These are "time release" capsules. I remember around 12:30 in the afternoon I was in a meeting with my sales management and, it released. I felt immediate anxiety at a very high level. Some of these medications make your symptoms worse for a period before improvement is seen, this apparently was one of them. I was one and done with Cymbalta and felt the effects for a few days after. A month or so later I tried another flavor of SSRI because I still had "pain". I tried Pristiq at a very low level and my body tolerated it well and after a few weeks of slightly elevated anxiety I felt better. Of course by this time our lives had settled considerably domestically as we were in our home, the kids were happy in school and as the saying goes "happy wife, happy life". I didn't see a huge benefit from the Pristiq and looked forward to stopping after HSCT when I had time away from work to absorb the side effects of coming off an SSRI. During my hospital stay I was taking so many pills in addition to IV treatment I just started skipping days of Pristiq. So Dr. Burt, I stopped taking Pristiq.
Mom and Dad were packing up yesterday morning and sadly my goodbye and thank you was brief and not nearly sufficient for how much they helped over the past several weeks as I headed upstairs to rest in bed hoping this would stop. I rested for a few hours and the episodes reduced in frequency.
Matthew had a soccer game in the afternoon so off we went. It was great to be outside in the sunshine. I took my cane to assist when the episodes hit my leg which were not infrequent. Matt's team won 4-2 and coincidentally one of my cousin Tom's sons was refereeing Matt's game and the other son was playing on the adjacent field. It was nice to spend time with him and my aunt and uncle who came to watch Conner's game.
I slept very well last night as my routine is normalizing and my body is clearing from toxicity. This morning I awoke and carefully walked around and downstairs trying to avoid leg problems. Within an hour the L'hermitte's attacked hard and fast. What is normally predictable based on the movement of my neck and the consequential strain on my spinal cord was now random, frequent and painful not to mention scary. I was having them every 5 minutes or so.
This entire post is pretty negative BUT in the spirit of maintaining some positive note to each update here it is. Because I knew it was L'hermitte's I looked it up on the Internet to learn more. Within the first paragraph it says this can be caused from MS (we knew that) but it also could occur during or after chemotherapy or upon sudden discontinuation of SSRI!!
This obviously elated me as two of the potential causes for this were recent, identifiable and not a probable new MS lesion or exacerbation!! The only better news I could have read would be that these are guaranteed to stop within a short period followed by several years of increased sexual performance! Sadly they were both missing.
Dr. Burt sent me an email today to see how I was feeling. I responded that the episodes are more severe and frequent in the morning but less in the afternoon. I told him what I read on Wikipedia regarding the correlation of chemotherapy, SSRI sudden discontinuation and L'hermitte's. Based on all I have described about Dr. Burt to you thus far, how do you think he would respond to me self diagnosing based on Wikipedia??? Yep, you guessed it, Poppycock! He actually told me earlier in the week about the SSRI discontination potential but completely discounted the potential correlation with chemotherapy. He said he's well aware of the correlation between the two but not with the chemo drugs he uses for autoimmune disease... Ok, I'm in no position to question the wizard.
He asked me to page him. When we spoke he told me he has never seen this before and he thinks it could be the SSRI issue. He told me he did research today whether L'hermitte's could be "some sort of weird pathway to PML based on my Tysabri, Gilenya history". Those of us in the MS world cringe when we hear any mention of Progressive Multifocal Leukoencephalopathy (PML) from a physician. This is a rare and progressive neurological disease. I know what you're thinking, don't you already have a rare and progressive neurological disease?? Yes I do but this one is MS on steroids. PML is fatal in about 50% of cases and causes rapid, severe and permanent disability in the unlucky half. The good news is he didn't find any connection between the two. I asked him if I should get an MRI and he didn't recommend it at this time but to keep him posted. Again, kudos to his amazing dedication to his patients reaching out to me on a Sunday, researching the issue and then initiating a phone call? Unheard of.
While I didn't anticipate posting so soon after announcing my slow down, I managed quite the recap of just two days. In truth I wasn't planning to slow down the posts so quickly I was just a little annoyed because my readership was dropping like a rock in China (I receive stats of readership by country daily) and I was getting frustrated (joke).
Friday, June 1, 2012
Day + 11
Today was a great day! What a wonderful treat to wake up to bright sunshine, beautiful green trees and most important doing it in my own house. The night wasn't great for sleep. I think it will take a little time to rid my body of all the drugs but coming downstairs around 6:00 to my own coffee, my own newspaper and morning TV shows was priceless.
My day today was dominated by overwhelming fatigue. I can't believe how powerful the effects of HSCT have been on my body. In a day that did not have any other pain or major symptom, the fatigue was unrelenting. A trip up the stairs required rest!
It was very nice to sit outside and feel the breeze and just rest and share with Mom and Dad before they head home to SC tomorrow. I spoke with Kim from Dr. Burt's office who called just to check in to see how I was feeling and confirm I had the plan set for weekly lab draws and my medications. Their care and commitment is so appreciated.
Bea and I got a lot done around the house. Lot's of appointments for next week: Pool, lawn, roof, AC, garage door. Next week will be a busy week. I also got a lot more work done than I have in over a week.
Despite the fatigue I did notice a couple of cool things. On a weekly basis I have to sign about 150-200 checks for work. This task had become increasingly difficult in recent months as the numbness in my right hand was not only making it difficult to turn the stack of checks one at a time but the fatigue in my hand made holding the pen difficult. Today I could actually feel the edge of each paper with my finger to flip the checks one by one! The fatigue from signing was about the same. Also, coming down the stairs in my house I actually felt my left leg bend a little bit! It wasn't completely locked up with spasticity requiring unnatural gyrations in my back to find the next step. It was slight and the fatigue was so strong I was moving very slow but it was there.
Unfortunately the next week will be cool and cloudy so I'll need to wait to tan my cue ball. Tomorrow the big item on the agenda will be Matthew's soccer game and a lot of rest.
My future posts will be limited to days with significant updates to report. I hope this journal serves to help at least one other MS patient considering this aggressive procedure to stop their MS. I have enjoyed writing this as it has brought feedback from many I love and it was those messages from you that helped me get through the difficult days.
If anyone has any questions regarding HSCT for MS please do not hesitate to contact me. The best way to reach me is kevmgrace@aol.com
Thank you again for all of your support!
My day today was dominated by overwhelming fatigue. I can't believe how powerful the effects of HSCT have been on my body. In a day that did not have any other pain or major symptom, the fatigue was unrelenting. A trip up the stairs required rest!
It was very nice to sit outside and feel the breeze and just rest and share with Mom and Dad before they head home to SC tomorrow. I spoke with Kim from Dr. Burt's office who called just to check in to see how I was feeling and confirm I had the plan set for weekly lab draws and my medications. Their care and commitment is so appreciated.
Bea and I got a lot done around the house. Lot's of appointments for next week: Pool, lawn, roof, AC, garage door. Next week will be a busy week. I also got a lot more work done than I have in over a week.
Despite the fatigue I did notice a couple of cool things. On a weekly basis I have to sign about 150-200 checks for work. This task had become increasingly difficult in recent months as the numbness in my right hand was not only making it difficult to turn the stack of checks one at a time but the fatigue in my hand made holding the pen difficult. Today I could actually feel the edge of each paper with my finger to flip the checks one by one! The fatigue from signing was about the same. Also, coming down the stairs in my house I actually felt my left leg bend a little bit! It wasn't completely locked up with spasticity requiring unnatural gyrations in my back to find the next step. It was slight and the fatigue was so strong I was moving very slow but it was there.
Unfortunately the next week will be cool and cloudy so I'll need to wait to tan my cue ball. Tomorrow the big item on the agenda will be Matthew's soccer game and a lot of rest.
My future posts will be limited to days with significant updates to report. I hope this journal serves to help at least one other MS patient considering this aggressive procedure to stop their MS. I have enjoyed writing this as it has brought feedback from many I love and it was those messages from you that helped me get through the difficult days.
If anyone has any questions regarding HSCT for MS please do not hesitate to contact me. The best way to reach me is kevmgrace@aol.com
Thank you again for all of your support!
Subscribe to:
Posts (Atom)