This Is MS Multiple Sclerosis Community: Knowledge & Support

[LadyJane]

Hello there everybody,

Just thought I would come in and say hi and tell you a bit about myself. I have been having problems for a few years now. Started with severe fatigue, tingling in toes, numb hand, swallowing issues.

I then had an attack of vertigo and an ongoing feeling of unsteadiness which lasted for months. Failed neuro exam pathologically brisk reflexes, positive rhombergs, etc. Mri came back clear and neuro said must be anxiety go and see psychologist which I did, who incidently felt there was something "physical" happening.

This year was diagnosed with restricted breathing pattern of unknown origin and upper airway dysfunction, hand was almost paralysed went to another neuro who was convinced this wasn't related to the other "episodes" and felt it was motor neurone disease!!!!!!!!!!!!!!!!!!!!!!

Went back to see her today for all the results of a zillion tests and everything was clear including the mri!!!!!!!!!!!!!!!!!!!!!

All she can say is "possible ms" Is this sort of a diagnosis or is this just something they say to shut us up from asking questions they don't know how to answer. She said they WON'T diagnose without lesions on mri but from what I have read any Joe blow who doesnt' have symptoms could have numerous lesions. I don't get it!!!

I said can't you have ms and a clear mri and she said they are the minority. I thought it was 5 - 10% she said much less. Anyway how do they work out who the minority are??? She said because I have no lesions it is probably a benign form but she doesnt' live inside my body. I';m so upset I could scream!!!!!!!!!!!!!!!!!!!!!

Has anyone else had clear mri's?????

[robbie]

When i was first diagnosed i too had a mostly clear mri, there was what they called hot spots in a certain area, they have since obviously developed into lesions along with others.

[gibbledygook]

I believe but I'm not 100% positive about this that primary progressive patients often have clear mri scans.

[sh8un]

Hi LadyJane
Wow...you have had a pretty frusturating road. I am really sorry. I found this info for you

"On the other hand, a normal MRI cannot rule out a diagnosis of MS. About 5% of people who are confirmed to have MS on the basis of other criteria, do not show any lesions in the brain on MRI. These individuals may have lesions in the spinal cord or may have lesions that cannot be detected by MRI. Eventually, however, the vast majority of people with MS will have brain and/or spinal lesions on MRI. The longer the MRI remains negative, the more questionable the diagnosis becomes. If the MRI findings continue to be negative more than a year or two after the initial diagnosis is made, every effort should be made to identify another possible cause for the symptoms."
from this website: http://www.nationalmssociety.org/Source ... gnosis.asp
Have you ever had a spinal tap done?

There is also this website that talks about criteria for diagnosing different kinds of MS like possible MS http://www.geocities.com/hotsprings/346 ... ria02.html

And...you are right about not having symptoms even if you have lesions. It all depends on where the lesions are. We don't use eveey single part of brain so thankfully we can get away with a few lesions that missed the important areas.
Hope this helps a little. It's just infromation and with this disease you have to inform yourself and choose your own path. I found that each neuro has his own opinioin and how to help the MSer but we have to find out what works for us as long as there is no proven cure. Take care
NN

[REDHAIRANDTEMPER]

raises my hand...yep right here...have had about 10 over the last yr and they are all still clear as day..have all the problems like no feeling in my leg tremors and fun stuff like that...but the lab work spinal tap...and last but not least the mris have been clear......am sure everyone has gone thru a period of this..its been a yr for me this weekend..sooo close bday is tommorrow and right after that i started to have problems..lol....body doesnt want to be older i guess and this is its way of relaliating...lol....okay sorry had to put a joke in there somewhere..okay well just hope this helps you feel a little better..have dealt with it and yes ya get frustrated and upset..but they are all here to listen and are all great at helping

chris

[mschat]

I have PPMS and my mri scan showed that i had lesions on my brain.

Having MS does not mean it is the end of the world though.

Keep smiling

Lee

[magsnz]

i had a few clear mri scans before i was finally diagnosed in november last year. i had an mri two years ago which was normal and then the one i had in august last year had three "minor"lesions - they were tiny... i couldn't believe that these three tiny specks on a scan could be causing so much trouble for my body.

i had a frustrating 13 years of being told nothing was wrong. you just have to keep trying to be positive... life is for living and we have to do as much as we can within our limitations