Hands Temporarily Out of Order

Hands Out of OrderFortunately at this point, I can type. I am writing this article just over a month from when symptoms started appearing from what can be called a flare, exacerbation, attack, or even just an episode of Multiple Sclerosis (MS). For a period of time I lost most feeling, control, and strength through a lot of my body. Most impacting for me in my life was experiencing this with my hands! I am often asked ‘what it feels like’ to have MS, and so this is the first in a series of articles covering the wide variety of symptoms that have recently come and gone through this most recent episode.

Currently I can type, which I consider my ‘coordination’ as well as ‘strength’. About two and a half weeks ago, this was not possible! I was barely able to communicate digitally, moving a mouse was near impossible and required the use of both of my hands! I think this is most clearly described as feeling like I was wearing multiple layers of rubber gloves, as well as weighted wrist bands, over a pound, probably about a pound and a half and trying to do anything quickly. Usually if one tried to do something like this, it would be difficult when first trying to do something like move a mouse, but then after a minute or two it would get easier. Normal feelings in my experience that fit this description are compensated for by the body making impairment temporary. However with this MS flare-up I experienced it was like that initial feeling of being out of control gradually hit, it took about a week for it to manifest to the worst symptoms, and then it has been slowing waning since. At the worst part I was able to ‘type’ ever so slowly using only the pointer finger on my left hand, being slowly and strategically placed over a key, lots of errors and absolutely painfully slow.

I started getting the coordination back before the strength and the feeling, at this point it was uneven as well. I My left hand improved much more quickly than my right (I’m right handed) for instance and while I could type pretty well with my left hand, my right kept ‘floating’ over to other keys, so my “L”‘s were often showing up as semi-colons and so for th because the drifting re-aligned where my hand was placed, imagine the kind of weakness you would feel after unpacking and organizing a huge bookshelf of books and then doing a couple pages of typing and I think you will understand what I’m describing a little bit. I had to watch my right hand to make sure that I had my fingers over the right keys, which was very distracting as I usually am a very fast typer!

Right now, about 4 weeks from the beginning of all of this, I’m almost completely better in my hands, I can sign my receipts, fill out forms, drive, type, change diapers, do dishes and so forth. I think right now is the most interesting as far as how they feel though. I describe it as feeling like I just got my hands wet, dipped them in some kind of flour or corn starch, squeezed them into fists making the substance cake in random places, and then putting some tight thin rubber gloves. So I can feel, but not fine details. Smooth surfaces feel bumpy and definitely not smooth, (this makes cleaning a little crazy because it doesn’t really feel clean). I’m hanging in there though, the hardest part is keeping myself from touching everything and observning how it feels as I watch and take note of what it looks like it should feel like.
In addition to all of this I experienced a symptom called “L’Hermittes,” “MS Hug,” and a kind of burning ring around my neck. MS is a very interesting condition to have.

This post was written by Kristin Bennett in February 2010 and is re-posted here with permission.

Breastfeeding and Meds (by Hannah)

This week is going to be a very difficult time for me emotionally. Tomorrow I have to get back on my MS meds. Tecfidera cannot be taken while pregnant, so I got off of it when I got pregnant with my sweet #3. Then she was born and I wanted to breastfeed for 3 months while I pumped enough breast milk to get her 6…read more

This story (in its entirety) originally appeared on Mormon MS Momma and was republished here with permission.

MRI Results + Action Plan

As I close out 2014 I’d like to express gratitude. November in particular was a crazy month for me. On November 1st, I hit my head. This wasn’t a huge deal when it happened (or so I thought) but then about 3-4 days later, I had a brain fog unlike any I had ever experienced. I was hardly able to think of words and definitely spelling them was a huge challenge, I found myself repeating words in my head to try and figure out the letters that made them sound like that. I was typing about 35wpm, which for someone usually typing between 70-80wpm was definitely a hit.

I knew this could be my MS coming into play, and I admit I was kind of relieved when I googled “concussion” and found that the symptoms I was experiencing were sometimes found during a concussion too. I decided to go to Urgent Care and they were able to convince me to contact my long lost neuro so I could get an MRI just to “check things out” you know “just in case”.

It has been a long time since I saw my neuro, and it had been five years since I got an MRI. The MRI was taken about a week after the fall, and the visit with the Neuro to evaluate it was about three weeks later. This has it’s benefits in that I don’t usually worry about my MS, and I’m lucky because I don’t usually have very many symptoms, also those that I do have are pretty intermittent. The cons though, are that we don’t know if this all “just” happened when I hit my head or if it has been getting worse this whole time. Here is an example of one of the active lesions, look at the white spot that has almost an aura around it here:

See active lesion in the right side of the picture.

See active lesion in the right side of the picture.

Not to mention the number of other less active lesions shown. My Neuro would like me to start one of the many drugs that are on the market, so that I don’t get so many lesions. Her interpretation of the lesions seemed almost that they are landmines, and that one of them could ‘go off’ and knock me into disability. We decided that I would continue doing what I’m doing, and take good care of myself and then we would see if any change has happened in 3mo or so.

I also had an appointment with my Naturopath, to go over the MRI and get some suggestions about what to do. Interestingly the goals and philosophies of the different doctors were very dramatic, for example the lesions I was told are NOT an indicator of disability. He pointed out that my brain was pretty lit up yet I am doing great (my symptoms went into remission and I’m no longer having trouble walking/speaking). He said that sometimes there are people with hardly any lesions that are in wheelchairs for example.

Life IndiegogoIn the middle of all this I got both my MRI bill, and an email that Indiegogo had started their Life.Indiegogo.com platform, so I promptly created a campaign to help me cover the MRI bill (which is over $1,000 dollars). Money is really tight right now and it is frustrating to have another big bill like this. I don’t have a “job” and so like the campaign says, any little bit helps!

Some of what I’m doing to take care of myself is to continue with my pretty strict diet of no grains, lots of vegetables and little bit of meat. I aim to eat a rainbow of plants each day and I’m getting reacquainted with my juicer. I am continuing on my Spiritual Journey and am signed up to take a “Self Mastery” class at the Center for Spritual Living. My doctor also encouraged physical exercise, so my bike and the pool I have access to near my house will be getting a lot of attention, emphasis was put on physical activity that forces the two sides of my brain to work together, I might start jogging too and yoga will definitely stay in the picture. I love getting exercise and appreciate having an excellent reason to get more of it!

I’m also reading a great book called Radical Acceptance. This is because I still have a lot of unresolved issues in my life (aka I’m human) and the holidays really bring them to the forefront. The book goes into detail and meditations and more to stay in the present and to not get stuck in the past or worrying about the future. Lots of self love, and it is doing me good so I thought I’d mention it!

Other than all that heavy stuff I’ve been working on clearing out clutter…piles of paper, cleaning the kids room and that sort of thing. Moving so many times in the 8 years since I have moved to Seattle has taken quite a toll and I think I’m about done with carrying around all of this “stuff”.

This story originally appeared on KristinBennett.com and was republished here with permission.

Mom Story :: 10 Years Later

Mom Story :: ChristinaIt was June 2004 and I was so busy getting ready for my September wedding that I was planning for almost 2 years. It seemed as though one day I rolled out of bed and could barely stand on my own two feet. I was so dizzy, a very strange light-headed dizziness. Everyone was convinced it was stress or maybe an inner ear infection. I started noticing other weird symptoms…like my right arm would get very cold and numb, my eye would start twitching out of nowhere, and these wierd “muscle-jumping” sensations. Of course when I googled all of this it came up that it was MS, which everyone laughed at and thought I was just a stressed out bride to be on the verge of a nervous breakdown.

After going to an ENT and even getting round of antibiotics (imagine it was that simple!!) I finally went to another doctor who sent me for a brain MRI in fear it was MS or a brain tumor. After the test I will never forget that my films were placed on the top of the pile…which is never a good thing. The next morning as I was in training for my job at the time there was a bunch of calls coming in and I found out that I had 13 legions in my brain and I had MS. It was a very emotional time and I was unsure what my life would become.

My soon to be husband stood strong by my side as well as my family and friends and we made it to the wedding and thankfully I felt good by that time.

I just had my 10 year MS anniversary and will be celebrating my 10 year wedding anniversary this September. I like to think my husband and I have a very strong bond after going through that right before our wedding. Our “in sickness and in health” started before our vows were even spoken. He has never missed one doctor’s appointment or one treatment in 10 years. I have an adorable little boy and a beautiful life. I also am under the care of an extraordinary doctor who has halted the progression of my MS and kept me attack-free for years.

This summer I will start planning my first MS fundraiser, which will take place in May 2015, so I can give back for the many things I have been blessed with.

**Event information coming soon!!

By: Christina Benevento