MS without brain lesions?

[Pinto440]

I'm a 49 yr. old female with problems the last ten years.  Started with not being able to lift right leg.  OK for a short period then optic neuritis in right eye.  Quit sleeping at night.  Constantly dropping things, forgetting things (and I used to have a near photographic memory).  Some test (don't remember name, should have been under 20) was 43 revealing some kind of inflammation in my system.  BUT - clear MRI so no help.  No pain pills, anitinflammatory, sleeping pills....only advice Neuro doc gave me was take TV out of my bedroom.  

I'm interested in finding out about MS patients that don't show lesions.  Doesn't ten yrs. of walking problems, vision problems indicate anything?  After many years of grinning and bearing it, now it's become noticable to my employer and because of the memory loss, I'm no longer working (and of course was denied disability-and am single and own a home).

My sister has MS and didn't show lesions until after 14 yrs. of problems and in a wheelchair.  Can anyone give me any advice - even just to let me know of a safe sleep aid if nothing else.

[Pinto440]

Heather,

Left you a note, but it appeared in MY notes.  Please read.  New to site and navigation of site. (Hey, lucky I got my picture in there!! Ha ha).  Thanks for your time.  I am going to call the clinic to find out what type of MRI machine I was on.

Thanks !!!

[young at heart]

PINTO,

SWEETIE WELCOME AND NO YOUR NOT NUTS!!!!  YOU HAVE FALLEN INTO THE REALM OF THE DEFECTIVE NEURO'S.

MANY NEURO'S ARE TO DISMISSIVE OF PATIENTS WHEN MRI'S ARE CLEAR.

MY MRI'S ARE LESION FREE,BESIDES BRAIN AND SPINAL CORD ATROPHY,PAST LESIONS CREATING THE ATROPHY.

FOR STARTERS YOU NEED TO GET ALL YOUR MEDICAL RECORDS,INCLUDING MRI FILMS IF AVAILABLE.

MAKE A TIMELINE AND FIND A NEURO THATS GONNA BE WILLING TO STICK WITH YOU FOR THE LONG HALL.

OTHER TEST BESIDES THE MRI'S ARE THE EVOKED POTENTALS,THE VEP,THE SSEP AND THE BAER.THESE TEST CAN DETECT LESIONS IN THE CETRAL NERVOUS SYSTEM THAT MRI'S HAVE MISSED.

THE T1.5 MRI'S CAN MISS MUCH,IT DEPENDS ON HOW THE SCRIPT FOR THE MRI IS WROTE.THE NEW MACHINES THE T3'S ARE DETECTING LESIONS NOT FOUND ON A T1.5.

HAVE YOU HAD A LUMBAR PUNCTURE.

YOU NEED TO FIND A NEURO WILLING TO STICK WITH YOU FOR THE LONG HALL AND TAKE YOU SERIOUS.MANY NEURO'S WHEN A PATIENT PRESENTS WITH OPTICAL NEURITIS CONTINUES THE TESTING OR REPEAT THE TEST.

WHEN WERE YOUR LAST MRI'S.

HUGS

T-LYNN

[Pinto440]

Thank you for response.  I am glad I found others like me and no longer feel the "Why Me" syndrome.  MRI was done in back of semi truck outside Cleveland Clinic, as they had a flood in the building prior to my test.  I was seen by a neurologist.  Don't know much about MRI machines.  They did brain with and without contrast and cervical spine without contrast.  Don't have good health insurance anymore and these MRI's were $12,000.00.  My sister said her lesions were on her spine, not her brain and it took 14 yrs. for them to show up.  I didn't mention all of my symptoms.  I figure pain and numbness were a given.  Lost bladder control too in year 2000, the year the eye problem occured.  I would think with the optic neuritis, sister having MS, and having these problems for so many years the doctors would take ME a little more seriously - but the only thing they listen to are these tests which show nothing.  It appears that my nerves swell.  It is painful and dibilitating but I look normal and tests always come back normal.  I was never sick before except for strep throat my entire life - and everyone is treating me like I'm some kind of nut looking for a disease to have.  I have to prove I'm sick right now to get any kind of financial help - I worked the last 34 years all except the last 8 months.  I've had to rent my house out for cash as my parents are both deceased and I have no children to help me.  (Finally applied for disability in Sept. and was denied in January - I have a lawyer and am appealing).  I don't think I'm nuts and I just don't know where to go from here.  Thanks for being a good listener !!!!!

Don't want to be too lengthy but, got a 2nd opinion outside of Cleve. Clinic and they found carpel tunnel and right foraminal stenosis.  Both were said to be mild.  I believe the cervical stenosis stems from whiplash 3 yrs. ago in a car accident.  I don't think this has anything to do with my condition because I was sick long before I got hit from behind.  Lastly, my symptoms USED TO come and go.  It's only been in the last year or so that they seem to have "stuck around".  Again, a million thanks for your time and understanding.  I wish more people understood neuro.

[Charley123]

Thank you for your questions.  I have had the same questions and found this site, quite by accident, yesterday.  I had MRI's done without dye and my doc said that I had lesions but they were the sign of aging.  I gotten more information in one day on this site than in the two years since I've been trying to find out what is going on in my body.  I would like to know where the updated MRI's are located in the North East.  I also have a sister with MS and my mother has it as well.  More info please!  You have described what has been happening to me for the last 15 years.  In the last two years there has been little relief.
Charley123

[Heather3418]

Welcome.  I am so glad that you found us, but certainly not glad to hear about all the problems you are having.

Yes it is possible to have MS without lesions.  There are a couple of questions I need to ask you about some of your testing thus far.  Did you have an MRI of the brain and the entire spine with and without contrast dye?  Do you know what strength machine your MRI's were done on?  On the older weaker MRI machines, lesions are missed all the time.  Especially in the spine. The newer more powerful magnets, 3T and above, will find lesions that a machine called a 1.5 telsa will miss altogether.

Have you had all the testing for mimic diseases than resemble MS?  I know that with your sister having MS you do have a slightly greater chance of aquiring the immune system problem that also occured in your sister.

Your symptoms are suggestive of problems like MS.  The fact that you have had very little break in between from your symptoms, concerns me.  Are you seeing a doctor that specializes in MS?  Seeing nothing but patients with suspected MS?

I am so sorry that I am full of questions.  I just need to know more in order to be able to try and answer your question as thoroughly as I can.  I'm sorry if I sound evasive.  I am not trying to be.

I really want to help Pinto.  We are so glad that you are here and will do everything we can to find you answers, short of diagnosing you over the Internet, which is impossible as you know.

Hang in there....Help is on the way.  Again,  welcome.

Hugs,
Heather