nerve damage

Being Goldilocks and Bearing the Weather

Everyone knows the storey of Goldilocks and the Three Bears. The tale of the little girl with the golden ringlets who commits criminal trespassing and theft at the home of the bear family, while the bears were out for a stroll. She breaks in their house, tries out their beds and partakes of the porridge that mother bear lovingly slaved over a stove to make for her family.mama bear.jpg

The little girl tastes each bowl of porridge, spreading germs may I add, until she finds one that is satisfactory. Papa Bear’s porridge is too hot. Mama Bear’s porridge is too cold. Then finally Baby Bear’s porridge is deemed just right, so she eats the poor infants food all up. Depriving a child of nourishment.baby bear

Even as a child I had misgivings about the little girls actions and thought the Bear family would have been fully in their right to eat the selfish little Goldilocks. But I digress…

With Multiple Sclerosis I find a parallel between this Mother Goose tale and how  I deal with weather in all of it’s variants.

During the peak of the summer months  the weather is just like Papa Bear’s porridge-too hot! If the weather is hot and humid I have all vigor of a limp noodle. Once the temperatures creep over 83 degrees my legs feel so heavy that simply walking across the yard makes me feel like Sisyphus eternally pushing that boulder uphill.

According to the National M.S. Society these temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree). An elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

Granted these heat induced issues are just a temporary worsening of the symptoms, but it does suck when you want to enjoy the season. There are measures to be taken when I know I will be out in the heat. Wearing body ice packs on my torso, wrists, ankles and neck- while not stylish does keep my core temperature down thus staving off the the weak, wobbly and woozies.

Then there is Mama Bear’s porridge-i.e. the way too cold winter season.winter poem

Living in the midwest we have
the full gambit, from way below freezing temps, sleet, wind and loads of snow. While the cold does not cause anything like the heat of summer it has it’s own ‘lovely’ way of making your body miserable in regards to M.S.

With the very cold my nerve pain goes throught the roof. Those icy tingles that one gets from too much exposure to me feels like daggers delving deep into my hands, feet and thighs. It is as if everything is amplified tenfold. My muscles are stiffer and thusly walking on icy surfaces is a particular feat. Imagine a giraffe on rollerskates, that is me.

Of course you plan ahead for the weather. Additional layers are a must, especially on the extremities with lack of feeling. Keep moving also helps, if your blood is circulating well you will feel marmer. Either way you do it you have to be conscientious at all times of how your body is doing.

Then there is Baby Bear’s porridge, like Spring and my absolute favorite Fall–just right.springandfall.jpg Not too hot and not too cold. The happy body weather. The weather where a sweater or light jacket is the only thing you need when going out of doors. I love being outside any time of the year but unfortunately only certain times work for me.

It’s those other times of the year…where you can only get so many layers on before you cannot breath or (for decency sake) you can only get so naked. So for now I am content sitting in my air conditioned home drinking iced coffee and dreaming of the Fall to come.

 

Ever find yourself wondering what the heck is this happening to me? Like most of us with some ailment this is more often than not. With Multiple Sclerosis it seems like it it is everytime I turn my head, or in this case it is literally everytime I bend my head.

Over the last three months it has become more and more frequent. I will be going along minding my own business turn my head looking down and zap! A shocking jolt of electrified pain flies down my left side and down the outside of my left leg. It lasts a mere moment but definitely doesn’t feel good. In fact it hurts like touching live electrical wire, it’s best not to ask how I have the unfortunate first hand knowledge of how that feels.

Google as we all know is a very dangerous thing to use for self diagnosis.google Search some symptoms and next thing you know you have some rare and incurable brain cancer. Knowing this I of course Googled.

*Herniated disc? Possible, back in 2000 I was hit by a 3 ton truck while driving Ford Festiva, maybe it is a latent (16 yrs latent) injury.

Nah, not likely.

*Ankylosing Spondylitis a type of arthritis that strikes the spine? Well arthritis does runs in the family, but not this variety.

Probably not.

*Lhermitte’s Sign, an electrical sensation that runs down the back and into the limbs. A symptom of other syndromes but commonly associated with M.S.

Ok, this one makes sense.

What causes Lhermitte’s sign?

In multiple sclerosis, Lhermitte’s sign is caused by damaged nerves responding to the movement of the neck. The movement causes inappropriate communication between the nerves because they are no longer fully protected by their myelin sheath. Sometimes the brain interprets the messages as pain even though there is no physical cause for the pain.

Evidently there is no way to get rid of it and it is not detrimental but it is literally a pain in the neck…er…back…er…leg. Well one more thing to try to get used to.

Jumping Out of My Skin

A few years ago I started to have issues with startling at the drop of a hat. I can be going about my business and somebody drops something sending me into a near cardiac. Granted when I’m deep in thought the whole world drops away and I’m completely oblivious to my surroundings. That being said it hurts when I am startled, literally it causes me physical pain. Like a electric shock in my chest. It is triggered by sound and sometimes by not noticing a person is approaching.

Now this is not a continuous thing…thank goodness. If I was constantly startled by every noise it would be crippling especially with 3 children and their friends rampaging through the house. Seriously at any given time there can be around ten kids coming and going, ringing doorbells and making noise.

This extreme startle reflex I discovered is called Myoclonus. In my case it is stimulant sensitive Myoclonus. Multiple Sclerosis has so many and varied symptoms. Each and every individual stricken with MS has a separate experience with the disease. It is not a one size fits all thing. Of the symptoms many suffer Myoclonus is one that can be overlooked or not readily associated with MS.

I wanted to know what causes Myoclonus and found that there are many different causes but in regards to Multiple Sclerosis it is likely the result of brain or spinal lesions.  As with everything to do with Multiple Sclerosis it is not fully understood what causes this but it is believed that in cases of stimulus sensitive Myoclonus, the brain becomes overly sensitive to the signals caused by external stimuli such as sound.

Myoclonus according to the National Institute of Neurological Disorders and Stroke
It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

In its simplest form, myoclonus consists of a muscle twitch followed by relaxation. A hiccup is an example of this type of myoclonus. Other familiar examples of myoclonus are the jerks or “sleep starts” that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties. When more widespread, myoclonus may involve persistent, shock-like contractions in a group of muscles. In some cases, myoclonus begins in one region of the body and spreads to muscles in other areas. More severe cases of myoclonus can distort movement and severely limit a person’s ability to eat, talk, or walk. These types of myoclonus may indicate an underlying disorder in the brain or nerves.

There are drugs you take to help with this and I find it most helpful for me to be as aware of my surroundings as possible. I still jump here and there but at least I am getting more used to it. More importantly those around me know I have this issue and no longer get upset that I freak out when they come around the corner unexpectedly. If nothing else I am sure that I’m entertaining to watch.  😉

Nerves Misconducting

The saga of getting my prescription Multiple sclerosis medicine, as I shared in earlier posts, was finalized as of last Thursday. I was simply overjoyed when the UPS man came bounding up the porch steps with my package in hand. By that point my walking was terrible and many of my old symptoms come roaring back. Now I wish that I could report instantaneous relief and normalcy after taking the first pill but I cannot. After lots of rest and sheer dogged determination I am certainly getting around better but the other things are lingering.

It is amazing what you get used too. A person can deal with much and manage just fine. It is when one new thing is added or an old thing changes that creates the proverbial straw that broke the camel’s back.

I have had issues with paraesthesia, a kind of pins and needles, numbness, and maddening crawling sensations on my back for years. It will increase in intensity sometimes due to stress, weather changes, fatigue and Lord knows what else. As long as I take care not to absentmindedly claw my skin raw I can usually deal with it.

Then there is the MS Hug. It is definitely not a sweet as it’s name leads people to believe. Anyone who has experienced this can attest to that. For me it is as if a 800 lb gorilla is embracing me around my lower ribs & abdomen area. While the gorilla is not crushing me he is also not letting me take in decent sized breaths and thus I’d feel as though I could faint.

Numbness was one of my first symptoms of multiple sclerosis. All over my body are areas of varying degrees of numbness. I cannot feel anything in the majority of both of my feet, areas of the left side of my body and nearly all of my left hand and half of my right. I once absentmindedly moved a casserole dish without potholders, forgetting it had just recently come from a 400 degree oven. I didn’t feel the pain that I should have when I realized my mistake and suffered burns. Then there are the number of things I have dropped, crushed and broke(once a wine glass) in my hands. Greater caution and the number of burns, messes and lacerations over the years have been minimized.

Lhermitte’s Sign is a strange one. When I tip my head forward, chin towards chest a momentary electric shock sensation shoots down my back and to my finger tips. It doesn’t last long, simply a momentary zap.

The straw that’s trying to break the camel’s back…

The thing that I cannot completely deal with is an uptick in the level of spacticity and pain in my left thigh muscles. The pain as of late has been horrible, a stabbing burn deep into my quads. Bad enough it brings tears to my eyes when I allow myself moments of solitary weakness. I take a variety of things supposed to aid this but for some reason they are not doing their job as well.

The other thing is tonic spasms. Tonic spasms involve the extensor muscles (quadriceps-front of the upper leg & the adductors-inner thigh muscles) is an involuntary straightening of my leg. It is so bothersome and there is no way to keep it from kicking out. I try to mentally restrain it to no avail. The best way to describe it is like holding your breath too long, to the point your body is screaming for a breath until it suddenly gasps, only in this case it suddenly and painfully kicks straight. These spasms interfere with sleep, walking and climbing stairs.

I understood that I was going to have detrimental things happen during the 3+ weeks while I waited for the insurance company to do what they were supposed to do. I also know this is just the right now and may not be my forever. If it ends up being a ‘forever’ symptom I will just have to deal with it. I take solace in the fact that I have learned to adapt to so much already and my rate of success on that has been 100%.

Migraines & M.S.

The other day I was thinking back to when I was a kid living in an apartment complex full of single mothers. Not really sure what prompted it but I recalled who lived in which apartment and what kind of car they had. How we used play basketball and generally roam like wild marauders sometimes armed with squirt guns. Then I thought of Jeremy. One of the neighbor boys I played with frequently, Jeremy, often had to stay outside for quite a long time during the day. I recall how he told me it was okay and how he would rather be outside because his mother was ill with migraines. I didn’t completely understand.

He said the house had to be kept dark and quiet or it made her head hurt worse. At the age of 10 I thought that seemed silly, couldn’t she just take an aspirin like my mom. There would be long periods where we didn’t see his mother outside at all. Family and friends of theirs would stop by frequently during those times. She would have migraines sometimes for weeks and occasionally would end up being taken to the hospital. I must say in retrospect I feel very sorry for how much she must have suffered.

I have had migraines off and on for years. There have been some stretches where I had more days with a migraine than without. It was at those times where I have been at my least productive, if not my least human. When the pounding in one’s head is coupled with the severe stabbing pain, light and sound sensitivity, malaise, aura, dizziness and nausea you become a useless quivering mass of misery.

It was after my Multiple Sclerosis diagnosis that the Headache from Hell became more frequent. Granted by then I was more acutely aware of every little variance in my body day to day and hour to hour. I looked into this some years ago-do I have more migraines because of my MS, or is it just coincidence that I migraines & MS? There has been correlation between multiple sclerosis and migraine with many studies to find out if migraine is a precursor of MS or a result of the disease. There are around 321 million Americans and 420,000 Americans with MS, so what can be interpreted by that?

Headaches according to the National MS Society

Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

One report noted that migraine headaches were more than twice as common in a group of MS patients than in a matched group of people without MS. Other investigators found a prior diagnosis of migraine in one-third of the MS group being studied. A third study found that 20 percent of a sample group of people with MS had a family history of migraine, compared to 10 percent of controls, suggesting that there may be a common predisposing factor to both MS and migraine. Vascular or migraine type headaches have even been reported as the first symptom of MS.

  

Then Daniel Kantor, MD says in his paper 2013 MS and Migraine: More than Meets the Eye

For most people who have MS and migraines, the migraines came first and are not caused by the MS itself. Some people, however, had no history of migraines prior to their first MS symptoms. In fact, in some cases, a bad headache led to a first brain MRI (magnetic resonance image) which eventually led to a MS diagnosis. Sometimes, however, migraine may be a symptom of MS or even a sign of a MS relapse.

Basically as with everything else about MS nothing is black & white or for certain.

I’ve done as much as I could think of to mitigate the migraine triggers in my life. I tried altering my diet, meditation, always staying well hydrated, exercise and rest to no avail. My neurologist has tried her best to find the right cocktail of prescriptions to keep my migraines under control. Over the years I have been on many things to try and keep the pain under control. It got to the point where I felt like the proverbial wall and they were throwing things at me just to see what would stick. Now I take muscle relaxers, blood pressure pills (I have naturally low blood pressure so this is a small dose), and two antidepressants just to keep the roaring migraines down to minor growls.

The latest thing spreading around the internet is Daith piercing. daith-piercingA Daith piercing is a piercing in the innermost cartilage fold of the ear. Some say it works in the same way as acupuncture, targeting pressure points on the body to alleviate pain.

I thought this sounded wonderfully easy, just go down to the tattoo/piercing parlor get some metal shoved in my ear and leave never to have headaches again. Just like so much else in this world it is not as simple or assured as that. In the last two weeks I did some considerable investigating into this. Even picking out what I would have for jewelry.

There is no proof this works. Some people have found this to be a wonderful way to reduce or nearly eliminate their migraines. Others have had this done and found that it was not the miracle cure they hoped for.

So I have decided to relax, sit back, drink coffee, take my pills, and wait for a day where the powers that be find a grand solution to migraines.

 

 

Illness & Hate?

Anna Akhmatova
“I seem to myself, as in a dream,
An accidental guest in this dreadful body.”
Anna Akhmatova, The Complete Poems of Anna Akhmatova

WIN_20160207_162603 (2)
Today sequestered in my bed at home I unfortunately find that I am alone with myself. My family is here and they are in no way ignoring me. Yet I am internally alone with my thoughts and feelings, in my bed my awareness of all the things my body is going through is screamingly apparent. I am generally not one to have a pity-party and I tell myself that I sure as hell am not going to start having one now. Yes, I have been better. I remind myself that I certainly have been far worse. The problem is when a person is alone with their internal discord of thoughts and feelings they can become somewhat pessimistic. Given enough time your thoughts will boil down to…this sucks & I hate this.
I hate the disease.
I hate the fatigue.
I hate the need for assistance because my body is uncooperative.
I hate the looks of helplessness I see in the faces of those who care.
I hate the uncertainty.
I hate the burning cold heaviness in my legs.
I hate the bouts of cognitive soup.
I hate the headaches.
I hate missing out.
I hate letting people down.
I hate the worry I cause.
I hate the pain.
Hate is a awful word. It is a word I rarely use. Hate is such a strong expression of detestation and loathing that there is few things in my life I can honestly attribute it to. It is when I am at my weakest that I feel free to apply it to things. When that happens I must stop myself-refocus, breath, take stock, and have faith.
If I were honest right now I must amend the fore stated list.
I wish there was no disease.
I accept the fatigue.
I love that I have people to help me.
I appreciate that people care enough to be concerned.
I understand that I do not know what will happen.
I adapt with layers to keep warm.
I laugh at my tendency to lose my track of thoughts.
I believe my headaches are temporary.
I enjoy what others can do.
I acknowledge that others will worry.
I undertake the pain, knowing that despite it I will not relent.

thomas bernard
“Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it’s the worst possible condition, because, if it is, we’re finished anyway, whether we go on the journey or not, and it’s better to die having made the journey we’re been longing for than to be stifled by our longing.”
Thomas Bernhard, Concrete

M.S. Diagnosis

It was on the morning of February 20th 2004 when I woke up with some numbness in my left arm and leg.  I decided to write it off as I slept wrong or maybe had a pinched nerve. I got myself, my toddler and the baby ready for the day.  My husband Tony had already gone to work a couple of hours earlier and the boys needed to be taken to Nana’s so I could get to class at the community college I was attending.  After dropping them off, while I was driving to school the numbness was worsening and my left side started feeling heavy.  I figured there was no harm in calling the local hospital’s ‘Ask-a-Nurse’.

I spoke to a wonderful lady at the hospital, telling her all of my symptoms.  It wasn’t long into the conversation that her tone changed a bit and I became a bit more concerned.  I parked the car and continued the conversation which ended with her advising me to get to the ER.  The nurse believed my symptoms sounded like I was having a stroke, possibly in part due to my birth control.

So turned around and headed to the hospital, calling Tony on the way.  He immediately went looking for his boss in the factory to let them know he needed to leave.  Upon arriving at the hospital I told them all that was happening and they rushed me back and hooked me up to an EKG.  My heart was fine.  By then Tony was there and the hospital staff was sending me for a CT scan.  That came back fine as well.  Next they had me do an MRI.  While sitting in the impossibly cold room waiting to hear about this final test I prayed…

“GOD please have them find whatever this is, I know this is not all in my head, give us answers and we will deal with them as we need to”.

You see for years, even as far back as high school, I have had these odd things come and go.  Pains, numbness, severe fatigue, and a whole myriad of other little things.  Physicians had on more than one occasion said ‘yes you have these things but we see no underlying cause’ alluding to it may be all mental.  Sitting there I was terrified that I was going to be told it was all in my head again.

When the doctor returned his face was concerned looking and he sat down on a stool and slowly began to tell us their findings from the MRI.  The physician said it looked like I had M.S. (multiple sclerosis) and that he wanted to send me to a neurologist as soon as possible.  I looked at my husband he looked like he just saw a terrible injustice; he looked at me with strong devotion and sympathy.  I wasn’t sad, scared, or even upset.  The sick thing is I was relieved.  It was ‘real’ and it had a name.  Granted I didn’t know anything about this disease at the time and I am sure I was exhausted from the hours of tests, but at that moment I was numb mentally as well as physically.

When we were finally allowed to leave the hospital we were both spent. Tony assisted me to car because by then I could not walk without aid. I didn’t want to tell anyone until I understood more but as it was we had to get our kids from Nana’s.  So there was no choice in telling them or not.  It was strange seeing the faces of my grandparents as Tony explained for me what all had happened.

Papa sat very still and listened but the old man’s brow was furrowed as if he was working on some sort of difficult task. Then there sat Nana in her chair, she looked helpless.  This woman is a rock, never did she put up with anyone’s guff, and she could do anything she wanted to put her mind to.  I didn’t comprehend this until years later when she told me what was going through her mind.

“I felt like the universe betrayed me, you are my first grand-baby and you were never have anything bad happen to you.  I was always going to make sure of that.”

There was certainly some humor that night though.  My mother has always been ‘special’ in her comprehension and certainty in her knowledge.  She began to tear up and pace about the room while Tony was explaining all of the events and results of the hospital trip.  I don’t know why but the whole scene for me was like I was outside of it all.  Watching the people in that comfortable, if not overly furnished room, as though it could have been on the television. Granted I was right there in the middle of it sitting in the chair by the fireplace holding a wiggly toddler on my lap.

That is about when my mother said,
“I am so, so sorry. You must have caught it from me and your father.  Something in our genes must be faulty.  It’s just not fair that my only child is one of Jerry’s kids!”

That’s when I snapped back into reality.  One of Jerry’s kids?  This struck me oddly funny seeing as I used to watch the MD Telethons and I knew at least this much, Multiple Sclerosis is definitely not Muscular Dystrophy.  So tired as I was and mildly irritated for reasons I’m still not sure I responded with a bit of biting yet giddy tone,

“MS not MD! GOD bless them but I’m not a telethon kid! “

The rest of the evening must have been unremarkable, seeing as I recall little about it. Tony got me home and put me to bed.  It would be one more long and uncertain day before I would see the neurologist.  The next day I saw my new neurologist, a Dr. Bekavac.  I had to have more MRIs done, with and without an injection of contrast to show active lesions.  I learned lesions are scars where the immune system is attacking the protective covers on your nerves.  Fun, huh?  That was followed by a spinal tap, not enjoyable but if you have ever had an epidural it is a similar process.  Instead of putting stuff in they are taking fluid out- gives you a wicked headache afterwards.  The diagnosis was a definitive MS.  The doctor wanted me to get on a disease modifying drug to treat my newly discovered disease.

The next morning Tony again stayed home to care for me and the boys, he also made phone calls to his mom in Manchester IA and my dad in West Bend WI.  The news was met with mixed feelings of denial and disbelief.  It was a lot to take in for everyone. Between the things the doctor said and all of the informational booklets about this disease I started to feel overwhelmed…and scared.

The drug treatments turned into a couple of month ordeal.  A nurse practitioner would come to the house and teach me and my husband on how to do the injections.  She was a wonderful woman who took her time and did her best to make us feel comfortable with the process.  On the third day of the drug Rebif the nurse noticed I was developing a reaction, a bad reaction, my tongue started to swell. She shot me with and EpiPen and called my doctor to let them know I could no longer be on that drug.  So a week later they switch my treatment drug to Copaxone.  I broke out in blistery hives. Same as last time I got shot with and EpiPen to stop the allergic reaction.  It was a few weeks after that that they had me try Betaseron.  Also a no go.

My symptoms progressed during that time. On top of the left arm and leg issues my right leg was starting to go numb from the knee down and the fatigue was unbearable. My neurologist started me on a run of IV steroids followed up with oral ones.  It would be years and a few trips to Mayo Clinic before I would be able to level out. During that time I went from using walkers, wheel chairs and canes interchangeably with periodic bouts of near normalcy with a smattering of steroids in the mix.

Through the days, months and years I ran a gambit of feelings-anger, fear, mourning, depression, detachment and finally acceptance.  Every day is it’s own day.  One day I may be absolutely fine and the next day find my limbs unresponsive.  But I did learn one thing and it is so desperately important…

….you can get through more than you ever thought you could and still see there is beauty and joy even in the little things all around you.

msbutterfly