willingtocope's blog

And yet again..

This time during the day, yesterday.  Okay until about 2pm, then chills...fever around 100F.  Legs completely gone.  After trying to go pee twice, and having to call the care attendents to get me back in my chair...twice...I decided to get in bed around 5pm.  And, of course, I had to call for help to do that.

Fell asleep.  Slept until about 10pm.  Tried to get out of bed to pee...couldn't...but luckily, I have a bottle.  Went back to sleep.  Woke again around 3am...got up just fine.  Peed.  Went back to sleep until 6am.  I got up, got in my chair, and I've been "normal" all day.

Whatever these episodes are (psuedo-exaccerbation?), they only last about 12 hours, then I'm good to go for another couple months.

Once again...

This time in the middle of the night.  Woke up with chills...lasted about 2 hours...then low grade fever.  Trying get up at 5am, and my legs were completely stiff.  I couldn't bend them at the knees.  I had to call the care attendents to get me out of bed and into my powerchair.  At 7am, I stood up to urinate and everything appeared normal.  We'll see how things are when I try to go to bed tonight.

This all puzzles me.  I'm still taking NACi, doxyi, and rithro daily.  Most days are pretty good.  I'm not walking any better, but its not any worse either.

I don't pulse anymore...last time my PA noticed my heart skipped beats and suggested I stop.  I did, and my last checkup two weeks ago showed no problems.

I haven't blogged in awhile...

Yet again...no real improvement...but...no further progression.  So, I'm going to call the protocol succesful.  I'm sure, if I'd get off my but and exercise a bit, improvements would come.

I did, however, have one of those episodes Aug 2.  I'd been feeling a little off for a couple days.  Low grade fever in the afternoon.  Monday, chills in the afternoon.  Went to bed, couldn't get up again.  Finally, about 5am, I struggled to my feet and then collasped (gracefully) to the floor.  Had to call the care attendants to pick me up.  No damage.

Turns out there was indeed a bug of some sort going around the building. 

Everything seems back to normal now.

I haven't blogged in awhile...

I also haven't pulsed for awhile either.  Pulsing seemed to turn my burner down to "simmer" and I need to be coherent because I still work for a living.  Things seem to be improving...slighty...without pulses, so I've let it slide.

Last Sunday, however,I had one of those "episodes".  Developed chills in the afternoon, went to bed with a low grade fever, spent the night unable to get out of bed...woke about 6am...everything back to normal.

I don't know if this is Cpni related or if I just caught something else.  Whatever it is...its been quite awhile since it happened before...and it only lasts about 18 hours.  Weird.

Potassium?

So, since none of the neurologists or MSi specialists in my area have anything to offer for SPMSi, the only "medical" care I get is from a visiting physican's assistant.  I have edema in my feet from sitting all day working on the computer.  A year ago, she prescribed Furosemide...40mg daily.  She also prescribed 10meq of potassium to "pull water back into my intestines".

5th Flagyl dose

Got my dates mixed up, so I did this one a week early.

Again, nothing major to report, other than I'm still extremely sleepy.  I would guess I'm sleeping about 12 hours a day...not all at once, but "naps" of an hour or two.

4th Flaygl dose.

Really, really sleepy...even now, two days after last dose.  I'm not sure what to attribute it to.

1.) I added Low Dose Naltrexone to my pill pile 4 weeks ago.  I'm still getting vivid dreams at night, and, instead of eurphoria mid to late afternoon, I get a little anxious. 

b.) I'm having bowel/bladder issues.  (I do have some probiotics but the last thing I need is rushing to the bathroom.  Sluggish bowels are pushing on my bladder).

Between the two, I sleep only an hour or so at a time.  I'm in bed for 11-12 hours, but I have to get up frequently.

3rd Flagyl pulse

Completed 12/11.  Nothing to report.

2nd Flagyl pulse...then, whammo..

So, Thurs. Nov 6, I completed my second full Flagyli pulse.  No real difficulty.  Feeling a little weak, but manageable.

Woke up Friday morning feeling fine.  Normal routine thru the day.  About 5pm, chills.  Went to bed early.  Around 8pm, legs were immobile.  Feverish.  Called care attendent.  Temp around 101.8 ...restles night.  Couldn't get out of bed saturday.  Temp spiked at 103.5  CA called nurse to room.  Nurse suggested I go to emergency room.  I decided to wait.  Stayed in bed. Still couldn't move Sunday, but fever fell back to 99.0

Low Dose Naltrexone

So, I got me some LDNi.  Before I moved to the big city two years ago, an internist at the small town hospital I went to agreed to Rx 120 4.5mg pills for me and they seemed to have a positive effect from what I remember.  When I moved here, the MSi specialist I saw said no, and my current PCP wants no part of an "experimental" treatment so I found an internet site.

i've been having increased "restless leg" symptoms at night and around about 4am, I develop extreme stiffness in my legs and my bad arm.  The stiffness makes it painful to move, but once I get out of bed, it goes away.  i've seen ancedotal info saying LDN helps with that.

But, I have two concerns:

Completed 1st complete pulse.

Yesterday, 10/16, I completed my first 400mg Flagyli, 3 times a day for 5 days pulse.  No real problems to report...perhaps a little sleepiness, some stomach cramps, some itches and joint pains I haven't felt in awhile.

Overall, walking still comes and goes.  Morning, getting out of bed to make coffee, I take real steps.  Then going from ther to the frig and to my desk, I have to drag my left leg.  Getting up during the day, I drag my foot.  Getting up to go to bed in the evening, I drag for 5 steps or so and then take 35 actual steps into the bedroom.

So...slow but steady progress...

So yet another Kidney stone...

No real pain.  Some discomfort.  Certainly knew when it passed.  I wondering where they're comin from.  Would CPni dieoff show up as stones?

3rd pulse...sort of...

Started 3rd almost pulse on the 21st.  200mg Flagyli, 3 times a day.  Stomach is a little unhappy, but so far so good.

Not all NAC created equal?

I get my supplementsi from Puritain Pride.  I must admit I'm a little sceptical that all of their thousand of concoctions do indeed contain exactly what the label says, I think I've discovered an analomy.

They offer two brands of NACi..."Source Naturals", 1000mg big nasty tasting pills...and "Puritan Pride Premium", 600mg capsules.

When I started the CAP protocol a year ago, I began with the 600 mg capsules.  As I built up too 4 a day, I had all the expected reactions and actually began to improve slightly.  In May 2014 I ran out, and thinking that 2 pills a day would be easier to manage than 4 capsules, i switched to the 1000mg pills.

Alrighty then, first pulse.

Five days...1 200mg Flagyli midday.  A little weaker and a little dizzier.  Interesting.

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