I've always felt a little guilty for not doing what so many other MS bloggers do and research about this disease. I don't provide any insight into the disease besides what I learn here and there and how it affects me.
My neurologist told me that the research was her job and that my job was to "take care of myself."
I try to do that. Though I work so much I lose sight of that many times.
A week ago last Friday I started feeling chilled from the inside out. I was working from home that day. At one point I felt like I had goosebumps, but when I looked at my arms I couldn't see any. And the cold spots I sometimes feel on my legs, I felt all over.
I totally disregarded all of this to the weather change and of course to the stress at work.
The next day it got worse and I have to say, for the very first time since I have known I have MS I gave into it. I hit a fatigue plateau that I have never had before. So much so that I had to stop in my tracks and sit down, sometimes just lay down on the floor where I was.
I had the pins and needles all over my body and in my face and in my head - very strange.
The coldness from the inside out, and I'm sorry - I don't know if that's MS or what, but that's just an ick feeling.
By Sunday my period started (Sorry Gentleman - fact of life), so I thought it was that. And my loving husband said, "Ohhhh, that explains a lot." Needless to say, I had been more than cranky the day before. The rest of Sunday I spent double-up with cramps so I didn't think much of the experiences of the day before and if they intertwined I wouldn't be able to explain which was worse.
Monday morning I woke up with a sore throat and a sinus infection that I felt like I had been having for three days already. So I worked from home that day and made an appointment to see my PCP the next day. I also left a message with the MS Nurse line.
It was bad that day - lots of sharp pains. I mean, the ones where it went from my pin prick in my arm to a pin prick in my leg, to my finger, to my wrist, to my lower back and it was just over and over. And the fatigue was just tremendous. I told my loving husband that I felt like someone had a Voodoo doll with my name on it. His reply - "I wonder who it would be." Like there's so many people out there with a Voodoo doll with my name on it. Wouldn't surprise me. :-)
So Tuesday I went to the doc, who doesn't really help but gave me an antibiotic, and then one of the MS Nurses called me and said something I didn't ever really know or pay attention to before.
People with MS can sometimes have flare-ups when they get infections, particularly upper respiratory. Now, I get these all the time - upper respiratory infections that is. And I've never felt like this. She also said that I may have had the infection in my body the Friday before I actually noticed it. Nice. I love my immune system!
So I went online to look up MS and Infection - Google it. I found all these articles about how they think that MS is caused by an infection - which I had heard before, but they mainly think it's from an upper respiratory infection.
Two theories: And remember - I'm just guessing here. I don't really know how much this helps anyone - but I hope it does.
1 - I had pneumonia several times before the age of 4 - to the point where they put some little sponge or something in my stomach (my Mom always talks about it) so I would stay hydrated - not really sure how the sponge would get out - but hey - it was the late 60's early 70's.
2 - I had Mono in high school. Funny thing about that - a friend of my sisters with MS said he had Mono in high school and he thinks he got MS from that. The only reason why I feel he may be on to something is because this past week I've been so exhausted that I've needed to lay down, but as soon as I lay down I feel full of energy again. I had that same thing with Mono.
Also when I had Mono - I had a headache so bad it hurt to move my eyes in my head. I've had Migraines like that before and I've heard that Migraines and MS are linked in some way.
I have no idea if any of this means anything or if it's just a bunch of hooey. I don't want to mislead anyone. But maybe it's good to ask people - have you had Mono or Pneumonia or other upper respiratory illnesses? Of course I'd like to ask - who hasn't?
I also felt kind of dumb because I hadn't read anything about the infection thing before. I do kind of leave it up to the doc, but this past week makes me want to take a little more charge of it.
Of course when I feel up to it. :-)
I have to say - this is still going on. I worked from home all last week. I went to the office today and it was tough. There was one point where I felt like I had no energy to move my legs for like five minutes. That's the giving up part. Just too tired to move them, I guess.
Right now I sit here and keep moving them around. But they tingle - that's been almost constant for the last 11 days.
I hate this. Mainly because I look good, except for the fat part :-). I look like a normal person. People I work with act like I make this crap up. I can't explain the pain or the feelings in my legs. They can't see it - so it's not happening. I guess that's kind of how I feel too. I look fine - so why don't I feel fine?
Gees - what a crazy f'd up disease this is. I can go from feeling just perfect to standing up and almost falling on my arse.
Anyway, I'm way off topic. I think that the great MS Neurologists out there are close to something. I trust my neurologist.
For the person who asked about a doc in St. Louis - go to St. John's Mercy Medical Center and ask for the top MS Neurologist. They'll give you her name and number. Not sure if I should post that on a blog and you had an anonymous email so I couldn't write back.
I hope you're all well. I look for your updates as well as emails and worry when I don't see new postings. Of course I am guilty of not posting as well.