Monday, October 30, 2006

MS and Infection

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.
Take care.

16 comments:

Anonymous said...

Mono, sinus infections, repeated strep, migraines ... all but pneumonia. My Mom who has MS gets that a lot though. I always figured that since you immune system is so jacked up, you over react to a lot of 'invasions'. The problem with linking MS to an infection is that unless the infection is in the brain, it does not seem to make much sense. But here is an article that supports some of your assertions and the critical links: streptococcus viridans and herpes simplex. You know ... cold sores.

Anonymous said...

PS: Pam, please take care of yourself, mkay?

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Anonymous said...

I have never had Mono, but 5 years ago when I went through chemo I got pneumonia several times. Growing up with Asthma I have also had many URI's. The thing about MS is that no one really knows what causes it, the thought is that it is multi-factorial. I do think they are getting closer to figuring things out though.

I hope that you get to feeling better real soon. Please take care of yourself and don't over do things.

Anonymous said...

When I was born my father, who was a bacteriologist, protected me from everything.

My baby bottles were boiled and the dried in the oven. I lived in as sterile an environment as possible until I was five. He didn't do me any favors.

When I was five I went to that great germ filled dump called public school.

I contracted everything all at once: measles, mumps, rubella, rosasia, mononucleosis, you name it. If it was a childhood disease, I was utterly unprepared for it.

Who knows what my immune system might have, and might not have, done.

But its done. Now I have an auto-immune system disease.

Sucks but there it is.

Allicannon said...

Wow. I can hardly believe what I just read, because it sounds so much like what I am going through. I recently had a pretty persistent UTI. I think it's cleared up, but I have been having pain that seems to migrate from my chest to my shoulder, then my hand or arm. I thought I was having a heart attack (my doctor says no way). Also, I've been having cold sensations in my chest and prickly fingers. Oh, and I should mention that I was diagnosed with MS three years ago. Thank you so much for posting this. I don't get to have an MRI until next week (another one, hooray!), and my regular doc (in between neurologists right now) doesn't know what's going on yet. I think I can finally sleep now... :)

Anonymous said...

Pamela,
You should look at http://www.cphhelp.org
Many MS people are recovering with a combination antibiotic treatment developed by Dr.Charles Stratton, a researcher at Vanderbilt University. I have had some remarkable recovery myself. I have been on the treatment for a year. The culprit is Chlamydia Pneumoniae.
Raven

Anonymous said...

Pamela,

Reading your blog was all too familiar. Today I am home from work with a sinus infection and feeling nasty. I too have MS and every time I get a sinus infection the vertigo from the MS kicks in. I went online to see what I could find out and that is when I found your article.

I had a bad case of pnemonia when I was 12 years old, I remember thinking I must be really sick because the doctor came to the house to see him. I could not get out of bed.

I had mono when I was 18. And for the second time, my doctor made another house call! The mono last about 6 weeks.

I also have a history of migraine headaches and I know that migraines and MS can go hand in hand.

I could have written your blog for you!! Truly it is amazing.

Nancy

Kristin said...

Hi Pamela,
It is kind of interesting because growing up I rarely got sick. I got the usual chicken pox and occasional cold & flu stuff. It wasn't till I was in my later years of high school and starting college that my immune system totally broke down. I got everything that came through the dorm and actually had to leave school because I was too sick to go to class. In high school I started sleeping really heavily and more frequently because I just felt drained all the time. When I had my first exacerbation and was diagnosed with MS my doctor looked at my medical history and said that the disease had started manifesting itself when I was in high school. I am now part of a study that is looking at the genetic aspect of the disease. I had to give blood and my parents also had to give blood so that they could make a genetic map. I go to the MS Center at UCSF in California. This disease can be frustrating but just keep positive and informed. There are so many studies going on and they learn new stuff all the time.

Kristin

Caitlin said...

I dont know how old this blog is. Something i failed to look at sorry. But i started having this numbness and tingling in my face (i've had MS for 5 years no, well diagnosed five but probably had it for 10) My symptoms first started with numbness, tingling, and muscle spasms in my arms but i dont remember if i had an infection at the time. Most i can remember was i felt relatively healthy. Well then i had my second relapse about 5 years later and that had to do with optic neuritis. I never thought of it before but i had just gotten over pneumonia at the time. Now im having this numbness and tingling on just the left side of my face. I called my doctor and he asked if i had a resp. tract infect. At the time i hadnt had any symptoms of one yet. Then about a month later (now) I get one. I never thought that maybe that could be whats triggering my MS all along. I want to thank your for your blog. I knew you arent answering all the questions out there about the mystery that is MS. But it's nice to know im not the only one who has these weird things going on to.

Caitlin

Linda said...

Infection.org is a purely informational site dedicated to the general Public. It provides a focal point on the Internet for Infection information. I am contacting you in order to inquire if you could add a link to Infection.org. We also have a section where we could post qualified resource links on Infection.org. If you have any questions feel free to email me. And hopefully you can add a link on your site to Infection.org.If you want more information on that please email me back with the subject line as your URL

Thanks for your Time and Have a Wonderful Holiday Season.

Anonymous said...

I have had MS since 1983..it was scary in all the normal ways you can remember, but now, it is mostly totally fatiguing (sp?). When it started, I knew something was wrong because I couldn't speak clearly. I could tell, other people said they couldn't, but I knew something was wrong. Eventually, the doctors got me going with the Betaseron medicines,
the shots, etc. I still have pretty servere fatigue, have mo energy, and I have not worked for the past 3-4 years. I feel like an idiot. I'm 50, and I am living my life like I'm 70 or something. My mother in law died of cancer three years ago, and pretty much she ran circle around me right up until about her last year or so.
I wish they could just tell me what I could do to get back even the barest of my old self. I used to work three jobs, the whole 9 yards. Now, my 9 year old can run
me out in a second. It is embaressing...So it goes...

Amanda said...

Hi! I can relate to you quite a bit. I decided to follow you. Please, feel free to take a look at my blog, just started it, because I am newly diagnosed with this MS disease.

I'm into my fourth sinus infection in the last three months...so, I decided to do some research to see if sinus infections and MS were related to the other. I was surprised to see all the sites with this information.

Never let a doctor tell you to leave the research up to them...it's your body and your disease...and you have every right to take the control of everything about your healthy...and it's done through self-research and making your own decisions on your health care. You're smart enough and you have personal experience to make you a great learner!

Okay, I'm off the soapbox now...take care!

Tricia said...

I just ordered, But You Look So Good, and it is a booklet about invisible chronic illnesses put out by the Invisible Disability Association. My sister has MS and gets really tired of that comment.

http://www.invisibledisabilities.org/shop/idastore/

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Susan Rogers said...

I had this "weird" illness when I was in high school. My mom is an RN, so, of course, unless my arm was falling off or I was near death, I didn't go to the doctor--so I have no idea if it was mono! At the time, I was working, in cheerleading and basketball,so she probably thought it was exhaustion. It lasted a week or so. My throat was swollen beyond believe (not to get graphic, but I couldn't talk without throwing up!), fatigue, and nausea. I've only had something similar in my late 20s or 30s, but it wasn't AS bad. It occurred when I was overworking myself. I was diagnosed with MS when I was 37. Of course, I was putting myself through the ringer when the symptoms occurred: I was in school to be a basic training instructor. Going from being a desk jockey to running 3-4 miles a day with 18 year old boys, marching 5 miles a day in the San Antonio heat 1500 miles away from my husband and daughter. I've never been under so much stress (mental, physical, financial) in my life! Just a week or so into training, my hand went numb. When I was younger, I would also get severe ear infections. I really think there is something to link infections and stress to MS.