MRI vs symptoms

[lstrl]

Ever since I started taking Avonex, my MRI results haven't progressed. Because of this, no matter what I say when I go to the MS clinic, I have to hear about how great I am doing and that my MS is stable. My symptoms, while not being extreme, still do show progression, but when the MRI doesn't back them up, they get completely ignored.

When I saw a physical therapist last week for an assessment, she explained it to me. The smaller areas of damage aren't going to show up on an MRI because they're still too small. She said they have to be pretty big in order to be detected on MRI, so it makes perfect sense why people progress, yet their MRI results don't show it. This is the first time I've ever heard this. Can someone please explain this to all the thick skulled neurologists who refuse to believe patients when they say they've got new symptoms? I'd rather see the physical therapist. At least she listens

[Temagami]

my understanding is that there are changes in the grey matter and these changes don´t show up as well on a standard, even T3 MRI machine.

I think that the 25 foot walking test at the neuro´s office is a joke- yes, if you are in dire straights, it will show up, but the subtle changes take more exertion than that to be noticeable- like when you wobble and become the Leaning Tower of Pisa.

You are able to notice the changes happening to you- do you check them off at your neuro appts. on the pre-visit paperwork?

[4boysmom]

I was the opposite. No symptoms, but new lesions on MRI. Doc changed med every year for three years! He was treating the MRI, and not me.

Either way is bad.

[lstrl]

The office I go to now doesn't have any pre-visit paperwork to fill out. I do tell him every visit on what hasn't gotten better and what has gotten worse, but because there is no visible relapse and my last MRI showed shrinking lesions and no new ones, he looks at it as things couldn't be better.

I've also told him I don't want to take Avonex anymore, but because of the MRI results, he downplays my reasoning for wanting something else. Over the summer, every week a few days after my injection, my leg would hurt so bad that it was affecting my walking (which is a bad combo when I've got balance and stamina issues anyway). It was like someone took a baseball bat and smacked my leg with it. Not wanting to go through that pain anymore wasn't a good reason to quit though.

I totally agree that the 25 ft walking test is a joke. I can pass that with flying colors, but my balance is actually really awful and when I'm fatigued, my walking is really pathetic. It takes way more than 25 ft to show it though, so they'll never see it unless I just happen to randomly lose my balance in that very short span. Last time I went in though, I did have to stand on this platform thing that moved and it tested how well I recover from any movement the platform makes. It was kinda neat and that one actually showed what I've been talking about when I say I have poor balance.

4boysmom, that and what I'm going through is exactly why they need to listen to their patients. One of the first things I learned when I started nursing school was that you're supposed to listen to your patient and believe what they say, whether you can see it or not. It seems most medical professionals forgot about that the day they started practicing.

[Waydwnsouth1]

I consider myself fortunate. My Neuro treats me not the MRI. It's only after examining me does he order and MRI if he feels it's necessary. But that's rate because he can see my progression in the exam. He listens to what I have to say then he checks me out. As for the 25' walk we don't even do that anymore. I can't put one foot in front of the other from the starting position. That's how bad my balance is.

If you are unhappy with the way your Neuro treats you or rather doesn't treat you perhaps you should consider a change.

[pennstater]

late,

I keep a symptom log and summarize/ prioritize and print both out when I go to neuro. I give a copy to him to make sure included in my medical record. So even if you don't do paperwork before visit, you may be able to get in record that way. The summary is really important though ad you won't have time to go the detail.