isnt good news supposed to be...good?

Dejibo · 03-10-2010, 10:07 AM

here is my whine/vent/rant or whatever you wish to name it.

#1 I HATE this disease!

I had an MRI recently (horribly expensive btw) and seem to be mid flare. The MRI is clean/clear/ no visible changes from the last MRI. This is good news yes? Then, what is causing all my recent symptoms? The MS folks say its "probably an MS flare or exacerbation"

I am ever so grateful that my MRI is stable, but I want answers! I want to know what is causing this up tick in symptoms, and I want tools to fight it with. I dont want a "probable" answer. I want a concrete answer of "oh! look, its right there! lets fix this!" *sigh*

am I the only one that is relieved by good news, and then...sorta disappointed by it?

gonnamakeit · 03-10-2010, 12:05 PM

There is info out there about how patients that show few lesions will show hundreds when run through a 7 Tesla MRI machine.

This machine is not in use for the general public, but it illustrates how so many of our lesions are there, but don't show up on the "normal" machines we are going through.

Your head is probably full of lesions which are responsible for your symptoms.

The fact that our lesions don't match our symptoms is a reality, but the fact is that many don't show up to be counted even though they are causing issues for us.

gmi

Debbie D · 03-10-2010, 12:26 PM

Sorry

for your "good news"...wish you had some answers...I always wonder what's going on in my body that the docs and I don't know about that could be causing flares

Ignorance is bliss, IMHO...

FinLady · 03-10-2010, 12:32 PM

I know how you feel, Dej. I've had that before. Mixed feelings when you have something going on and the MRI doesn't seem to match. My MRIs have been "stable" for three years, but I do have some uptick in symptoms. Some are probably the Fibro, but I have a few that I'm sure are from the MS but aren't showing.

tkrik · 03-10-2010, 12:52 PM

(((Dej))) I am going through the same thing right now. Symptoms and no set answer, just a take this pill and we'll see you back in 6 weeks. I too want to know what I am fighting so I can fight more effectively and efficiently. I get tired of the floors dropping and my brain quaking/shifting.

While we like to hear that good news of no progression, we also like to know why the symptoms are acting up and what we should do about it. What you are feeling is perfectly normal right now, as upsetting as it may be.

I don't have much advise, just hugs and prayers that you start feeling better soon.

sabimax · 03-10-2010, 04:42 PM

Dej I go thru this every time I have a MRI, as I almost wish a machine in my small towns would show something... is that sad to wish a lesion on me?? but with all the sxs looking and acting like a duck I think it is a duck!! but can not be a duck till certain criteria is met.... uggggg venting with you lol
sorry

hugss to you, I know what you mean, sorry about the good news, sarah

Dejibo · 03-10-2010, 04:58 PM

Spoke to my neuro at length today on the phone. He said there are just some things technology hasnt caught up to, and the human body is one of them.

We can slide a patient into an open MRI and see 2 lesions. Then slide the same patient on the same day into an old fashioned closed MRI and see 7 lesions. Then take the same patient, same day into a Telsa 5 MRI and see 15 lesions. If we could slide each patient into a Telsa 7 machine, we would see layer, upon layer, upon layer of lesions. For this moment in time, we simply cant count on the machines to give us the total picture. We must use that as the tool it was intended to be.

We must use a patient history, a physical, a full exam! and blood test, along with the MRI to hopefully spell out a good idea of what is going on. Does this mean we are gonna see clearly into each patient each time? nope! It just means that based on that patients history, and the current information in front of us, we know that probably what is happening to Dejibo is that her brain is under attack, but the current pictures show that its not this huge dramatic explosion that would make us want to crack her skull open and go in for a closer look. it means that a lower level of disease is there, pecking away, and doing its best to make a lousy day.

He was very kind, very patient, and his story helped me understand that just because the MRI didnt show the explosion that I feel, doesnt mean it isnt happening on some lower level or that the lesions are just too light weight to show up on this level of machinery.

I love my MS team! They really go the extra mile to help me understand, even when its frustrating and hard.

Thanks you guys for letting me know Im not alone in this mess.

legzzalot · 03-10-2010, 05:07 PM

Sorry for the yucky MRI. For some reason mine tend to multiply every time I have pictures taken and the solution is always a big fat "nothing we can do about it but try to treat the symptoms". It's frustrating, and I know anyone with this disease can agree.

Jules A · 03-10-2010, 06:15 PM

I am in awe over the dedication of the wonderful MS specialists that spend their careers working on this miserable, thankless disease.

SallyC · 03-10-2010, 06:23 PM

I use to hate it when I'd get an upbeat report from my Neuro.

Oh, I left the office smiling and then I'd ask myself..."what are you smiling at, idiot, you still have MS and it's never going away".