I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.

Friday, March 1, 2019

New Lesion - Journey from 11/2/18 to 3/1/19

On November 2, 2018, I awoke with the feeling that my forefinger and thumb had super glue on them - you know that feeling when you get super glue on your finger and you can still feel things but the sensation is duller or abnormal somehow?  That is what it felt like.  I immediately recognized this as an MS symptom.  Then I took a shower and in the heat, the feeling of dulled touch sensation began to spread to my entire hand and then I was even more sure this was something to do with MS.  I had taken part of the day off because my son was out of school.  For the majority of the day, the "numbness" remained mostly from the tip of my thumb to the tip of my pointer finger.  In the afternoon, we went to Chuck E Cheese and played some games which was fine, but there is a gorilla strength game where you're supposed to grasp these handles and then they vibrate and I guess the point is to hold on as long as you can.  My son wanted me to try the game after he had taken a turn; I found it quite easy since the sensation to my hand was quite dull.  I found it to be quite strange and I'm still not really sure what the point of the game was, but oh well.
Throughout the weekend, the numbness continued, varying between two fingers to whole hand to up the arm.  Monday I was scheduled for my regular neurology appointment where we discussed this new symptom and how this was likely a new lesion on my cervical spinal cord.  I knew going into the appointment that this was likely caused by a new lesion - I had dealt with this same issue before but in my left hand so when it happened to my right hand I knew this wasn't just an exacerbation of an old lesion.  I was glad to learn, however, that my strength in my right hand was still good and it was just the lack of sensation that ailed me.  We decided at my last appointment that it was time for me to get an updated brain MRI so after this newly-discovered symptom the decision was made to also get a new cervical spine MRI (I haven't had a cervical spine MRI since right after my diagnosis).  I was very curious to find out what the cervical spine MRI shows because I don't think I had even had the issues with my left hand before my original MRI of the spine.
Monday and Tuesday were frustrating with work creating some aggravations due to having issues typing due to my lessened sensation in my fingertips - kind of like trying to type when your hands are REALLY cold (but it is only one hand having the problems).  Also, the sensation (or lack thereof) began spreading into the right side of my torso, ugh!  Monday evening, I had a private volleyball lesson and was a little worried that I would have issues there but I did not - thank goodness for muscle memory!  The lesson actually gave me a chance to take my mind off of my hand for a bit which was very nice!

Today (November 7th), I am struggling!  My hand feels kind of limp and it is kind of painful to try to type, utilize the computer mouse, manipulate binder clips, and otherwise use my hand.  The pain and "limpness" goes into my arm from time to time making some of these day to day activities even more difficult and frustrating!
What has been most frustrating over these last few days is how hard it is to deal with this while taking care of children - when I was first diagnosed, we had no kids so I really only had to take care of myself (and a little bit, my husband), but now I have to take care of myself and two little ones (my husband helps tremendously, but I don't like to be weak and admitting that I can't do something or need help or need a break is really hard for me).  I know it has been many years since I last posted on this blog, but I felt that I needed to memorialize my symptoms as well as my frustrations and other feelings.
What seems most crazy to me is that the issues I had with my left hand began in November 2010 - eight years ago to the month!  I wrote the following in a blog post from January 27, 2011:

Since My Diagnosis

As I sat at work today, I had the sudden realization that I had regained almost full feeling in my left hand!  In late November, I began to notice some numbness in my left forefinger and thumb.  That numbness quickly spread into the rest of my left hand.  Now, for clarification, I don't mean to say that I had absolutely no feeling whatsoever in my hand, just that I had reduced feeling.  The numbness I experience almost feels as though the skin has gone numb.  I can feel pressure, but the sensation is reduced and feels abnormal.  It was really bad at one point - I had problems picking up the phone and typing with my left hand, but I got used to it and just made it work.  The numbness started to dissipate toward the beginning of this year and by the beginning of this week, I was only noticing numbness in my fingertips.  Today, it feels almost normal, I only notice slight numbness in my fingertips when I rub my fingers against an object.  Very exciting stuff!  It is weird how I just get used to the numbness and then all of the sudden it hits me that the feeling is gone.


Also, back in December, I experienced numbness in my torso, mainly the left side.  At one point or another, the numbness had affected every area on my left torso and some parts of the right torso.  By the end of December, that feeling had mostly gone away, but there were times that although it didn't necessarily feel numb, it definitely felt weird and not normal.

Facinating, right?!?!?!

UPDATE (11/30/18):  Had MRIs  (brain & cervical spine) done on 11/20/18. My symptoms have gone from just 2 fingers (pointer and thumb) to whole right hand to entire arm to entire right side of body including up the back of my neck and into my ear and down into my right foot. From 11/19/18 through 11/22/18, my symptoms have just been isolated to my right hand.  My hand has also felt swollen at times and it can be hard or painful to bend my fingers. I reviewed my MRI scans and could see active lesion at top of spinal cord. Waiting to hear radiologist's opinion still.

UPDATE (12/3/18): New lesion at the top of spinal cord that I saw is all that was seen by neurologist which is good.  I have now began experiencing L'Hermittes occasionally (which indicated inflammation of an old lesion) along with continuing right hand numbness as previously described.  The issues with my hand have still remained isolated to my hand as of late without spreading into my arm and body.

UPDATE (1/8/19): For about a week now, I have noticed my hand feel normal from time to time and the "numbness" has been minor mostly flaring up with heat.  I can still feel slight dullness to the touch sensation, but am feeling much closer to normal!  Hoping to have that same realization I had back in January 2011 of a return to full feeling soon!!!  I still experience L'Hermittes occasionally also but that seems to be less severe as well and seems to happen less frequently.  For about 2-3 weeks, the L'Hermittes has been much more noticeable than the numbness in my right hand.
Towards the end of December, I got a letter from my health insurance company informing me that my Copaxone would no longer be covered and that I would have to switch to the generic glatirmer acetate.  This is something I have been dreading for some time (ever since they announced the generic).  Generally, I am all for generics - I am find with generic ibuprofen, acetaminophen, antibiotics, etc..  However, when I know that a generic medication can vary up to 20% from the original (and I have no way of knowing how much the glatirmer acetate generic varies) and we are talking about a disease that cannot be reversed, I am just not okay with becoming a guinea pig.  I have had ONE new lesion in EIGHT YEARS, which is pretty incredible.  I was lucky/blessed that we chose Copaxone at the onset (before step therapy reared its ugly head) and that Copaxone has worked so well for me.  If I switch to the generic and due to variations (of up to 20%), it wasn't as effective for me and I started getting new lesions or even bad exacerbations, then I may have to try other therapies and fail (possibly leading to various disability) before they'd allow me back on Copaxone.  Step therapy may be the DUMBEST thing I've EVER heard of!  So when I received that letter, I cried then started thinking about what I needed to do to try to stay on Copaxone.  I made some calls and was eventually told that I was approved to remain on Copaxone until 2023 (YAY! I hope...).  The days after receiving the letter and hearing that I may actually get to remain on Copaxone were stressful and emotional which is not generally a good combination for a person with an auto-immune disease and I definitely noticed my symptoms were stronger during those times.  On 1/4/19, I called the specialty pharmacy to refill my Copaxone prescription with the expectation that I'd be told that I could only get the generic and having to jump through a bunch of insurance red tape, but I was pleasantly surprised to have no issue whatsoever and today (1/8/19), I received my medication and it is Copaxone!  YAY!!!  Praying that I truly have no issues with refilling the prescription in the near future.

UPDATE (3/1/19): The "numbness" in my hand/right side has gone away completely!!! The L'Hermitte's is a little more stubborn but is only occasional now! Still no problems getting Copaxone!  All is looking up!  Remaining optimistic.

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