There will be a new kid on the block soon.  I asked my usual question- "Do you have any friends, relatives, or enemies with MSⁱ"?  The answer was affirmative.  He should be here shortly under the  name "Skymaster" or "Skyman".  As soon as he posts with the "submit" button we can communicate with him!

 On to the serious matters.  My B-12 was actually high at my visit to my PCP Wed.   He suggested cutting my dosage down from the 10000 mcg. to 5000  I had increased it recently and it must have worked really well.  Dr. Stratton said in my semi-annual email that I seem to have the cpnⁱ under control and "in the near future" could stop Rifampin.   I  never thought I would hear such a thing.  Problem was, how was I to know when the near future arrived?  "When I no longer have reaction to the drugs."  Well, I certainly have LESS than I used to so I'm partway there.  He suggested 1 to 3 years more on a regimen to be certain. 

MSⁱ lesions NEVER go away.  This was said to me yesterday by my neurologist who at the same visit said "If you need me, call".  He also said "No MRI- there is no indication for one"  Why is that ?  "I don't get MRIs just because a patient asks for one".   Why do you think you are better?  The antibioticsⁱ, I said.  Silence and avoidance of eye contact.  (Sound familiar?).  "Have you ever seen this?"  I asked.   Finally I asked for the third time and sat staring.  No, was the reply.  Also, I have moved UP on the EDSSⁱ scale from "at least" 6.7 to 2.5.  I said I have been up running around for 10 hours. 

I am  PPMSⁱ.  I have had ONE attack and it has lasted 10 years.  I have been fighting back very hard  for over 15 months now.  Avonex is in my past which was probably the biggest shock for my neurologist.  While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark.  I said "No, not for two weeks."  His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great."  I said "Yes, with Avonex and steroids"

This disease seems to choose an area of the body to concentrate on in its "pain of the month."  Last winter was my hips which no longer hurt.  Last summer my shoulders and neck became so painful that my range of motion became increasingly  restricted.  After many nights of sleeping on my back (I am a side-sleeper)  I can now sleep on my side again.  The horrible pains of my shoulder are pretty much gone but I have adhesions from curtailing my range of motion over many months.

 All this leads to my point- stay flexible.  Easy to say, but I have been working very hard on stretching (carefully!) my right arm which has become very inhibited in range of motion.  Now that I am more cognizant of these things, these pains are more easily differentiated from the daily pains of MS.

I had not planned on witing an entry, but with all the talk of being cold, I had to.  For several years, I have been increasingly cold below 50 F. My standard  outside clothing has been t-shirt, turtleneck, sweatshirt, snow suit and a down jacket and I was STILL cold.  This winter, after 15 months on abxⁱ, I wear t-shirt, turtleneck, and sweatshirt.  When it has been in the 20's and 30's I wore a jacket but took it off in the barn,  which is not heated.  This is all absolutely incredible!.  My boots are not out of the closet and I have worn my sneakers every day. 

On a philosophical note, we are so attuned to instant everything that we can't seem to comprehend that this is NOT overnight.  As for my stopping abxⁱ, I am still improving at such a rate that I will wait for a "sign" that it is time to change something.  My conviction is total that I have a chance (maybe one) to get some of me back.  I will do everything possible not to jeopardize that, and I want to see how much.

The usual blinding fog has not descended and I am in the middle of day 4 of 5,  No.15 Flagylⁱ pulse.  But my walking has held, my mental acuity also, and the worse-every-night unpleasant "shimmering, glowing sense in my legs" is almost gone.  (That is why I began this Flagyl 1 week early)  Today I will go for LFT and will after that take my Avonex which will be 8 days.  In the past I was on an ever-declining slope of physical capabiliy, wishing earlier and earlier that I could have my interferon so that I could be a little less tired and walk a little better (with cane or walker) for a few more hours-  after the reaction of at least 20 hours had passed, of course.

 This morning  I did the test for myself that neurologists love: the shin test.  All of us who can stand are familiar with that: you stand, holding on of course, and run the heel of your bad leg down the other shin.   In the past  I could not get within 3 or 4 inches except when I hit it by accident on the way from here to somewhere else.  As a matter of fact, at some point I could not even lift my foor from the floor.  This morning I ran my right heel (the bad one) down my left shin and then again and again.  Not only could I run it up and down, it goes without saying that I could PICK UP my foot to do this.  I just  now stood up to do it again this minute and did it without holding on to ANYTHING.  Perfect, or close enough!  Where is Marie????  Remember, this is 8 days after weekly Avonex on day 4 of Flagyl!  Stay with it, guys.   Requirements are  lots of patience, choking down lots of pills,  and the knowledge that you may not be what you were before this nightmare but I bet you will be better than your worst!  None of us expected to get better so this is miraculous.   And I have two strikes against me.  I am an "older patient"  (I am 66 going on 35) and I am PPMSⁱ.  We are supposedly limited in our recovery in either case.   If this is "limited" I definitely say "GO FOR IT!

A Flagylⁱ rhythm is  emerging.  Maybe I was not mentally clear enough to see it before or maybe it was not there.  Maybe it is the stage of recovery or the addition of Azithromycin and NACⁱ a couple of months ago.  My 14th pulse of Flagyl ended 13 days ago but my body is telling me to do it again.  I have become aware the last few months of not a tingling but a "shimmeriing, glowing" after about 12 days post Flagyl.  I feel REALLY good after the fog wears off (about 4 or 5 days after finishing Flagyl) then there is a buildup, very subtle at first, now clamoring, of -what?.  I woke at 5 am wondering if I could take 1 dose of Flagyl of 500mg. (in the US we have 250 and 500mg)  per day every day or if I might just begin a week early.  My walking is not as good either- not bad, but it was better than ever 12 days ago. 

Here I am at  Day 5, post Flagylⁱ the 14th.  My mind is clear, it is winter (NC  version. That is why we are here- it is like Texas with trees).  I am walking really well and yesterday walked 1/2 mile over rough ground because I could.  I had admirers with me-  our 4 dogs.  They thought it was a great idea!

 

The most amazing thing is that I am not only not freezing, I am comfortable and it can be in the 40s F.  For a number of years I have worn as standard outside clothing below 50 F.: t-shirt, turtleneck. sweatshirt, snowsuit, down jacket.  It has been in the 30s F. and I have  worn only t-shirt, turtleneck, and sweatshirt, at times removing the sweatshirt in the barn.  Only twice have I worn a jacket because it was raining.  We have a down comforter that goes to  -20  and it is still put away.

These are symptoms that are ongoing and in view of the bigger picture did not even come to mind earlier today but I see that they are fairly common. I have had ringing in the ear several to many times, the last three fimgers beginning with the middle one, are somewhat to almost totally numb, I have had iritis for 18 years with two lens replacements (both eyes)for steroid-induced cataracts- not systemic steroids. Iritis was not part of the MS picture but I now have a count of 9 prisms (everything is double). That probably was caused by MS and half my hair fell out after onset of MS 10 years ago. Sounds worse than it is but easily dismissed when I think of where I was headed shortly and the fact that now I can walk, turn around, get up from a chair (or even the floor), climb a fence and go a

Happiness may be the realization that you don't need a cape to fly (if you are Superman) or that you don't need Avonex to walk (if you have MSⁱ). One week before I take up the Flagylⁱ thing for the 13th time. Now that it is not just on faith that I will someday see improvement but can actually expect it makes my heart sing. The hardest part may be behind me. Those are words I never thought I would say. Maybe I will call that neurologist because he may say "Let's do an MRI." Boy, would I like that. I don't think it is a delusion that I walk, talk, and think better than I ever thought I would again during the very dark, dismal days of 2003 and 2004. I only wish I could relieve my friends on these sites of even some of their anxiety and say "LOOK, friends, no hands, no walls, no canes." But we each have to make our own ways.

In 1995 on a hot July day the 450 bales of hay had to be unloaded. I had made water bottles for everyine else but, being indestructabe and in a hurry, drank and ate nothing all day. That was Tuesday. By Friday I was dim and fading and my husband took me to the hospital where I was treated for dehydration and kept for 5 days, becoming septic, caused by fire ant bites on my right foot, later to become my "bad leg", blood pressure 70/50. After coming home to recuperate, I developed shingles at the level of six inches above my waist a few days later, was treated for that and lost virtually all feeling from that site down on the right side of my body.

Like most of us stubborn people with this I continued to do what needed to be done, driving to the National Goat Shows in 97, 2000, 2001, 2002 I realized I had to face the fact that I was REALLY tired and not as strong as I had always been. And I had not been in the show ring for a couple of years because I tripped a lot. I went to Chapel Hill and they said "You are too old to have MSⁱ - (I was 55)- You have had a series of small strokes" and put me on a mind-bender called Aggrenox based on the lesions shown by my MRI. My husband, a pediatrician, took me off this horror after a week.