DO MRI STUDIES ACCURATELY REFLECT YOUR DISEASE STATUS?

[Sukie427]

I found a very interesting study done by Harvard University researchers who concluded that there is no link between clinical exams and MRIs in some MS patients. Since I was diagnosed 7 years ago, I always wondered whether my really bad days or new symptoms meant that there were new ;lesions or whether if there were no new lesions whether the new symptoms or worsening symptoms were either somatopsychic or caused by something other than the MS. When I first was diagnosed, I went for a second opinion at Duke University and the dr. there said that there was a very close correlation between the studies and the symptoms so I thought for sure that it was either somatopsychic or something else. Then my treating neuro disagreed and said that the MRIs and neuro exams are tools like anything else and that they had to be considered along with symptoms to get a true picture of disease status. I have noticed a worsening of symptomatology with no apparent new lesions, and then I found this study, Characterizing Clinical and MRI Dissociation in Patients With Multiple Sclerosis published in the Journal of Neuroimaging and then reprinted in MS News Today. I can't exactly say that I feel better that the correlation between the MRI and clinical exams and the actual disease status isn't present in many individuals who have MS, but at least I feel like I am not nuts when I feel as if certain symptoms are worsening and the clinical information doesn't show it. In fact, I felt so much better about the whole thing that I went out and got Sedona hair!

[erash]

Sukie427 love the hair!

I read that article too. I also have progression of MS symptoms w/o MRI changes--SPMS?

I think the first doc is correct in that lesions on the spinal cord do seem to correlate with limb symptoms/weakness, and some areas of the brain (e.g. Lesions on cerebellum and balance problems) are likely correlated but I like what the treating neuro said, MRI is just a tool in a box of tools. 🔩🛠

[Reneeblessed in reply to erash]

So glad you wrote this Sukie427. I have noticed my symptoms relapse and remitt, and MRI are not showing any new lesions. However, I have so many lesions how can they tell. Often it has been UTI, heat, cold, noise, or some other physiological conditions my body will go haywire over, OR STRESS!!! Since my I find myself reverting to my pre diagnosis, " keeping things to myself " . Neurologist exam have been "scripted" I just forget,too fatigue, don't want to sound whinny, gotten use to pain or discomfort ...and get script for blood work and schedule appt or MRI ....OUT THE DOOR. As in " The Wiz" thankful Neurologist didn't bring me"NO BAD NEWS"...just want to take my numb, tingling, shooting pain, and drag my weak leg out of office. I already know ( knew) I had relapse, I don't like steroids or sitting in emergency room for hours to be admitted. As long as I can talk" well enough " i stay home and rest it out. That seems to be the treatment anyway. My neurologist has also change my meds. My diagnosis freed me, MS is in Our heads...but we are not " crazy" we are sick.

[greaterexp]

Sukie427 , this is surely the most maddening disease! I read that article, too, but it is still bewildering about the disconnect between lesions and symptoms.

BTW, enjoy your new hairdo!

[jimeka]

Sukie427 it does us good to do something different. Ms has a way of dictating to us, and so being a bit rebellious is good for the soul. Enjoy how the new hair do makes you feel, blessings Jimeka 🦋 🌈

[jennie62]

Sukie427 Is the article still around? It's probably not available in an audio version. I'm finding it hard to keep track when reading. Thank you for adding the title so I can look it up. I found the article online and what I've read makes me want more!

Is there any reason/symptom that tells why people have cog fog?

I LOVE YOUR HAIR! Jealous ME? YES! I've finally found the hair color(s) I want! Thank you for sharing the picture!

Jennie

[erash in reply to jennie62]

jennie62 i believe it was this article that said there were no specific areas on MRI associated wit cognitive changes

[jennie62 in reply to erash]

Oh well, I'll just ask my neuro in 2 weeks when I see him. I know I've been told more than a few times, but my memory doesn't work...hahaha

[Jesmcd2 CommunityAmbassador]

Love the hair Sukie427 it's awsome! I just cut 13 inches off mine.😄 It went to Wigs for Kids. 😊

The info is great. Here is the link for anyone that wants it. multiplesclerosisnewstoday....

J 🌠

[bavery207]

I must admit, I am experiencing a sense of relief as I read your questions/comments Sukie427 . I had Deep Brain Stimulation surgery 1 and 1/2 years ago and I am no longer able to have MRIs. Perhaps it doesn't matter so much anyways!

[WAshingtongirl]

Beautiful hair, Sukie427 . I love the colors!

My neuro has always told me that MRI results don't represent the burden of damage/symptoms. MRIs are the best tools we have today, but they don't see or tell all. Thanks for mentioning this! 💕

[Kevin_McMillan]

Sukie427 thank you for sharing, it seems I read that or one like it. I have also read that for every 1 lesion seen on MRI there are 10 you don't see. I just read where cog fog comes from, I think it is the white matter of frontal lobes?! I have read the lesions always represent the severity of disease, especially in men. My Dad had Agent Orange, my twin brother was in Seattle for an appointment for chemical poisening from work. One of the Dr's had worked at the VA and said they heard many stories from Vietnam veterans about their kids suffering from MS and they have the most severe symptoms as well as widespread symptoms. It took a while to get DX'd because of so few of lesions etc., my brother told the Dr that she just explained my brother(me).

[hairbrain4]

My MRIs haven't changed in 18 years but my symptoms have. I had 9 active lesions on my brain & 5 bands on my spine when I was diagnosed. I have had many different symptoms come & go over the years. Right now I have no symptoms. My balance is a little wobbly at times but that could be my ears. I wear hearing aides & have bad tinitis. When I don't have my hearing aids on I have balance issues. It is interesting how MS decides to act up or lay dormant. For me it acts up under stress of any kind.