Tuesday, March 4, 2008

I learned something new today!

I got the phone call from the nurse at Shands Jacksonville today in response to that email I had sent my doc. I told her about my hand being numb for 3 days and the increased spasticity in my legs for those same days.

She asked me if I had a cold or any type of infection preceding that 3 day period. I thought back. I remembered that I pretty much have an ongoing UTI since my bladder doesn't empty well and I am slacking about drinking enough water.

I told her that while I was feeling lousy from the increased symptoms I was also trying to drink more water and take cranberry supplements to get the UTI under control.

It was kind of an "aha!" moment for both of us. She said they have to document any increase in opportunistic infections (such as upper respiratory infections and UTI, etc.) because the MS drugs, since they suppress the immune system to one degree or another, have a tendency to allow these infections to slip through past the immune sentries.

I asked if what I had was an exacerbation then. (Which was my original question) She explained to me that for those three days, while my immune system was sending out the infantry to fight the UTI, some of the army was misdirected and went chewing on my myelin instead. Therefor it was a "pseudo" exacerbation. Real in it's effects, but not instigated by the MS process to begin with.

So this is why it's so important to treat any type of infection...so it doesn't make the MS sit up and say "hey! we want to play, too!!"

UTIs apparently are lumped in the same group as the head colds when it comes to things Fingolimod (or Avonex) will allow to happen to you to a more pronounced degree.

Lucky me.

I get to go see the doc on Thursday for my scheduled 6 month trial checkup, so if I am further enlightened, I'll spread the knowledge then.

I always thought a pseudo exacerbation happened when you got over heated or too tired and the nerve paths that were already damaged were just not functioning right. With rest or a cooling off period, things returned to normal. I didn't realize it could be actual disease activity.

I'm thrilled to learn something new about MS -- especially during MS Awareness Week/Month. How very appropriate.

7 comments:

LISA EMRICH said...

Wait a minute....I'm with you on the 'pseudo-exacerbation' does not equal 'actual disease activity.' My neuro (prominent in the Consortium of MS Centers) and his MS nurse (International Organization of MS Nurses) have said repeatedly that pseudo-exacerbations are NOT caused by new or ongoing damage. So the army of disease-fighters is not going about chewing on fresh myelin. Please let us know what the doc says on Thursday. I'm curious now.

TickledPink said...

That's exactly what I always thought, too, Lisa. My doc is the head of the MS Clinic at Shands Jacksonville and his nurse is highly respected and knowledgeable in the field of MS as well.

On top of that, my doc is also the lead investigator in this clinical trial.

Either I misunderstood or I've always had it wrong.

I'll be sure to bring this up and find out if it's some kind of new activity brought about by opportunistic infections causing inflammation.

Meanwhile I'm googling pseudo exacerbations and UTIs. A lot of interesting reading out there in medical papers. If I find anything definitive I'll post it.

TickledPink said...

I just found this in a book called Multiple Sclerosis: The Questions You Have, The Answers You Need by Rosalind Kalb:

http://tinyurl.com/3a9ss9

If that link doesn't take you directly to the correct page, the info is on page 91 and basically says that UTIs can cause pseudo exacerbations and that it's technically not a real exacerbation due to it being caused by the underlying infection and not disease activity.

I'll be sure to take notes when I see the doc.

Linda said...

Love your blog. Years ago my then junior HS aged daughter asked "Mom, is the pope older than you?" We were watching the poor man wheeling around in his little car.
I've never been really clear on what's a psuedo-exacerbation. I've had a slow, steady deterioration for years. Until the last violent,virulant attack two years ago. It laid me up for weeks. Our daughter got very proficient at changing my diaper. Add to this my neuro was having some sort of crisis and skipped town. So, two years later, my new neuro has diagnosed secondary-progressive(like it really makes a difference), I'm stuck in a wheelchair, the daughter does the cooking (minimally), the house is a disaster, the trash hasn't been hauled out to the road in two years (we live in the country and no one cares if trash bags are stacked shoulder high by the barn)

But it's frustrating not being able to walk. It's been a hard adjustment for everybody concerned. The other day my husband observed that sitting at my computer I look just fine.

But anyway, I was wondering, what injectable do you use beside the Fingolimod pills?

TickledPink said...

Hi Linda! Thanks so much for stopping by! Wow...you are really fighting a battle with this monster, huh. I'm sorry that things are rough but it's great that your daughter is helping out.

The only injectable I take is the one that the Fingolimod is pitted against in this clinical trial. The way it works is, I give myself a shot once a week with something that may or may not be Avonex. Then I take a pill once a day of something that may or may not be Fingolimod.

Either way I'm on one of the disease modifying drugs. Only the drug company knows for sure which one, but I strongly suspect I'm on the real Fingolimod since I have no reaction whatsoever to the shots.

Thanks for reading along. It's so nice to meet new people through blogging. Do come back and visit again.

LISA EMRICH said...

Hi,

I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.

Thanks,
Lisa

TickledPink said...

Lisa -- and anyone else reading along -- got the definitive answer from MS doc today. NO. There is NO demyelination with a pseudo exacerbation. The end.