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).
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