Tag Archives: neurologist

My One Defense

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44.  That is the number of days that I have been on this restrictive gluten-free, sugar-free, fat-free fiasco of a diet.  We’ve (me and Tob) been detoxified and cleansed.  We’ve been vitamin’ed up and herbally enhanced.  We’ve drunk a lot of water.  It’s been good and bad all at once.  The whole purpose and intention for this was to feel better.  A desperate attempt to change the direction of my health.

I wish I could say so many good things.  There are several, actually!  I am mentally and emotionally pleased with myself for accomplishing something hard.  Cutting out sugar is something I would not normally do with sound mind!  I love all the foods that are bad for me.  Getting to the point of being thankful for lightly salted vegetables and brown rice – a beautiful meal for millions in the world – was difficult for me.  Being thankful for the manna.  Will you choose to be thankful, or not?

As far as the effects of the diet on my health; I’m unsure of how this detox and cleanse have impacted my body at this point.  There are a few things I’ve definitely noticed:

1.  I have zero wart on my thumb.  My body was able to fight that off after a year of it being there.

2.  I’ve lost like 10 whole pounds!  My jeans fit better, I’m leaner and within a handful of pounds to my ideal weight.

3.  I’ve completed something I set out to do.

We are sticking with the diet indefinitely.  I know, right?  Who would do that?  It must be doing something, huh?  It’s hard to see the good that it could be doing right now.  I think I will have to give it long-term approval.  I am exhausted.  I was tired when I started this diet and I’m just as tired now, if not more.  Sleepy fatigue.  It is very frustrating.  I want to do so much, but I’m just inexplicably tired.  I’m still at that place where I’m not sure when to sleep and when to fight it.  Lately, sleep has won.  I’ve maintained a regular sleep schedule during this diet, and for most of the year so I’m not sure what more to try in this area.  There is some medication that my neurologist said I can take for the fatigue.  More pills.

My leg pain is steady.  I feel like my left knee and ankle are pretty weak these days, on top of the pain from the spasticity.  I take Baclofen for this and it definitely helps.  However, there is a deeper, wandering aching – almost like a toothache – type of pain that is almost always lurking deep in my legs somewhere.  I say “toothache” because it is often ranges like that annoying pain where you know something is wrong with the tooth all the way to needing a dentist right NOW because of the pain you can’t ignore.

In addition to needing help with the pain and fatigue, I have a few other things that I’m just now starting to personally research.  I have been studying things like “clonus” and how to differentiate benign familial tremor from tremor caused by disease or damage.  The tremor has not lessened.  I feel pretty awkward when I notice people noticing it.  It’s like wearing a bright red Britney Spears latex jump suit.  People notice.  My left hand is the back-up plan.  I’m not very good at making it my dominant hand now, which I probably should be.  It is getting more difficult to write, particularly, signing my name type of stuff.   As luck would have it, my left forearm is crapping out on me!  I’m not joking!  Lefty is the back-up plan and lefty is getting weak.  I’m unsure what this means.  I have an odd sensation of pressure wrapped around a good portion of my forearm.  It “feels” weak.  I think the neurologist felt that my right hand was noticeably weaker than the left at my appointment.  I think we should pray for lefty and possibly righty.  I will not be human if I can’t use my workin’ hands!

Not only will this particular blog serve as super record keeping down the road, it’s also helping me get my thoughts and primary concerns ready for my appointment at the Multiple Sclerosis center of  OHSU in Portland.  That’s right.  I got an appointment!  This June.  I researched the clinic while waiting for all of my paperwork to be filed.  Which is another mystery in and of itself.  My information was faxed over to the clinic in November/December.  I got an appointment with Dr. River, my neurologist here, in January, so I didn’t pursue my application at OHSU as aggressively as I should have.  Meghan, sweet Meghan, reminded me I needed to be brave and after speaking with this angel, I got courage and called the clinic to figure out the status of my junk.  I had to get more information from Dr. River sent, a week went by.  I was laying around the house feeling bad.  Doing nothing.  I called again.  They need more paperwork.  I was totally confused at what other paperwork they could want.  Turns out, my chart was mixed up with someone else’s.  After a very influential phone call from my sister at the doctor’s office here in town, OHSU called to offer me an appointment that very day.  I was so shocked when the lady said she was calling to get me scheduled.  I’m like, ‘Wait, what?  Like, the doctor is going to see me?  OH!  MY! STARS!”  I felt so redeemed.   Thank you, Lord.

The doctor I was randomly paired up with is very knowledgeable in Multiple Sclerosis and Neuroimmunology.  She has special interest in dietary influences on neurological disease processes.  Um, could I not have found her at the most perfect time?  I am totally prepped!  45 days, now, into a variant of the diet she advises for conjunctive MS therapy.  I am so prayerful for this appointment.

At the same time, I am fully aware that I cannot rely on this doctor to fix this mess of mine.  I know I can’t.  I’ve been there before.  I think the best strategy for my brains and my heart going into this is this:  she is a part of my faith journey, a very intentional act of God.  If she helps me, it is with divine guidance and wisdom from Him.  I understand that this may be nothing more than a waste of fuel to drive to Portland, she may not even want to actually talk to me when I get there.  She may be a jerkface.  Regardless of what happens, I will go with the Lord, I will come back with the Lord, I will pray for the Lord’s hand to be in this, to lead me, to help me and to be with my doctor.  My hope can only be in Him.  I am so much closer to believing He is always with me.  Amen.

 

 

T-7

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Who has two beautiful gerbera daisies and gets to see a neurologist next week?

This girl!

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I am relieved and excited!  When I think about it too much I get anxious.  Here’s the thing.

I cannot put all my stock in this neurologist.  I did that with the Mayo Clinic and it was really defeating.  I have to set my mind on Jesus and thank him for the progress that will be made at the doctor next week, whatever that is.  I pray that no matter what I will be joyful, continue praying and have a thankful heart.  I cannot come up with the number of different outcomes that next Tuesday might bring.  Definitely MS and still on a progressive slope?  A different, treatable form of MS?  Not MS at all???  Do I still have to have another spinal tap?  Are there really lesions on the left side of my brain now?  Is that what has caused the dysphagia?  How severely can this problem progress in MS?  What can I expect the tremor to do over the next five years?  Can we do anything for the pain?  Am I crazy?  I almost wish she would tell me I really am actually just crazy and this is a hallucination.

My grandma was 36 when she lost the use of her legs because of her severe and progressive MS.  Her name was Franka.  I didn’t know her as a granddaughter ought to know a grandmother.  I knew her as handicapped, drooling, in a wheelchair, confused.  She was on her horse and my Papa Roy told her to get off and get the gate closed.  He saw the cattle getting out and came over to where she was and she couldn’t move her legs to get off of her horse.

This last month I had my 34th birthday.  That morning I chatted with a friend who happens to have the same birthday as me.  His mom had MS and she died when he was 15.  It’s hard not to be scared of my disease progressing to the state of being paralyzed.  On my 23rd birthday I went to a neurologist because the tremor, muscle fatigue, and pain had all started the November before.  That was the day that he told me that we were first doing a scan for MS.  My scan came out with lesions on it, smaller than would be expected, and the week after that neurologist told me that I was a mental patient.  He said there was nothing wrong with me and that Toby needed to get me to a psychiatrist IMMEDIATELY.  There was screaming and chaos and people gawking.  Straight out of a movie.  Crazy.

Two weeks later, I wake up one day and I fell multiple times trying to stand up out of bed.  I didn’t understand what was going on and I realized I couldn’t bear any weight on my right leg.  It’s not that it was painful or there was something damaged, I just couldn’t walk on it.  I finally figured out how much of a stride I could take and though it wasn’t much, I was not going to waste it.  I called Toby and told him what was going on.  Then, I hobbled down our apartment steps and went walking.  I walked and walked around the busy Boise city blocks surrounding our apartment.  Toby came home from lunch and tracked me down.  From the way I was walking he knew I needed assistance.  We went and bought a cane.  I had to use it for several weeks and then tapered down to months until I finally was strong again.

Sometimes I wonder if I was actually spared.  I really think that if I had laid there in my bed, crying, and grieving I’d still be in bed.  Progressive MS typically starts in older patients and it usually does involve walking difficulties as the onset of the disease.  I wonder, if my choice to get up and walk was honored by God before I even knew Him.

There are so many outcomes of my doctor’s appointment.  So many possibilities.  I’m afraid to hope for comfort.  It may be in God’s will that I am meant to suffer.  We may not be able to slow down or stop this disease from happening.  I am prayerful that whatever the doctor tells me, if she tells me I’m crazy, tells me she can’t do anything, can or cannot give me medication…  whatever it is…  let my hope and my faith and my strength be in my Master and Healer, Christ Jesus.  Please pray for me.