MS without lesions

I have had classic MS symptoms for 10 years.  (numbness, weakness, tingling, hyperreflexes, etc.)  Two neurologists diagnosed me with MS 8 yrs ago. I have been hospitalized several times and received steriod treatments.  At times, it was so bad I could not walk and had to go through physical therapy.   However, I do not have any lesions on my brain or spine.  Spinal tap revealed two bands indicating autoimmune.  I took Avonex for a year after the spinal tap diagnosis.  I stopped when additional MRI's revealed no lesions.  This year, I went to a MS clinic and the neurologist there performed every test under the sun (evoked potential to see if it was peripheral neuropathy, blood tests to rule out other autoimmune diseases including Lyme, etc) to try to rule out everything BUT MS.  Every test came back negative.  I heard that 5% of MS patients do not have lesions.  Is this true or just a rumor?  Are there cases like mine out there without lesions?  

[floridamom2]

I also read on the National MS website that 5% do not have lesions but I have yet to find someone who was diagnosed without one.  Of the four neuros I have met with so far all 4 have said "well your MRI's are negative so that rules out MS!!" apparently we are the only people who know of this 5%.

I just read something on the criteria that talks about this.  I will look for it and see if I can copy it for you.

Take care!
Kristin

[Heather3418]

Your information is correct.  5% possibly higher have NO lesions on MRI but are present with classic MS symptoms.  It's felt that the lesions are there, but are not detected by MRI.  As MRI technology advances, I feel sure that those people that fall into that 5%, will really be found to have numberous lesions.

MRI has come a long way.  It's getting better and better.  Hopefully, something will show up for those 5%, that have tested negative for every other thing that can be causing their symptoms and they will treated appropriately.  As always, time seems like the key word, when it comes to this disease, or diseases so similar to it.

Heather  

[T-lynn]

Yes,I was diagnosed with MS without lesions ,but other test were positive ,the LP,the evoked potentials and a VNG.My MRI's came back with thoracic lesions as that area was never MRI'd in the beginning.And yes 5% of the people are DX'd without lesions.

T

[LauraH007]

Thanks so much for responding!  If you can find the article you read, I would really appreciate you passing it along.  :)  Laura

[LauraH007]

The current neurologist feels that there may be lesions that just can not be seen on the MRI's as you said.  She was sure that there would be lesions on my cervical spine since that seems to coincide with my symptoms...but it was clear as could be.  It makes me feel better that there are other folks out there that have the same issue I do.  Thanks!  All the best to you!   Laura

[D17]

I am 27 and when I was 25 started having dizzyness and hand tremors. My dad has the same thing without ms, but recently I have had leg weakness. I had an mri 8 years ago when I had a bad car accid. Showed three white matter lesions. Had mri last year, same lesions but more stable. No lesions on cervical area. I am so scared, I am seeing a shrink ( a neuropsych) he says he does not think it is ms, he would put money on it. He thinks I am stressing out, and having anxiety causing these symtpoms. I want to believe that but I can't let it go, that it could be ms. I just had a baby girl and if I was dx I know I would fall apart. Another part of me wants to get another mri since it has been a year. my psych says just wait. I had not seen him in 6mo's and he wants to have a few sessions first to see if sx calm down with his help. Please help me! I feel like I am crazy.

[D17]

Also my neuro says lesions can be present on a normal person. That he could pick ten people at random and some would have lesions. Could be from my car accident. He says lesions are not in typical ms areas, they are grey and dingy, not bright white. That they do not enhance and infact look better than when the first mri was done 8 years ago (More stable). I never new what the mri from 8 years ago even said, they never told me. They must have chalked up the lesions to my car accident. Ever since I read the report from the new one that said early stage ms should be considered I have been pankicking and my symptoms have been woresening ever since.

[floridamom2]

Hi Laura!

Here is the site that has the McDonalds criteria for MS dx in a graph form that's easy to understand.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

Good luck and take care!
Kristin

[LauraH007]

Heather,

Please remember that a MS diagnosis is not a death sentence...it's not cancer.  You can live a wonderful life with MS.  I raised two daughters, work full time, have my own business and have made a pact with myself to L I V E life to it's fullest.  I've had problems since 1995 and I am still a functioning able-bodied woman.  Sure, there are times that are worse than others.  There are times I may need a cane or am drained.  But, you will be able to take care of your beautiful baby girl and you can and will have a great life.   I'm glad you're seeing someone to talk about your fears - I'm sure that is helping you a lot.   You are definitely NOT crazy.  It is a scary thing to deal with...but I am proof that you can have a full life even with a MS diagnosis.  There's so many others here that feel the same way and they have great lives as well.   Staying positive is the key.  I know that's easy to say - but it's the truth.   Have faith in yourself !  You are stronger than you think.  I wish you all the best - please keep me posted on your progress.  Take care - Laura

[pennst8r]

One of my 2 sisters with MS was diagnosed without lesions, mostly based on the LP. Her MRI now is lit up like a Christmas tree, but it wasn't then.

DOn't feel badly. Even with this first hand info, my doc still said , MS is "impossible" without lesions. Even explained that 5+% and that didn't phase him either.

Penn

[Heather3418]

Even though you posted to "Heather," I think you mistakenly put my name and were really addressing D17.  Correct?

[Heather3418]

I don't know how it happened, but your posts to ME, totally slipped by me.  Hopefully our retired pediatrician Quix, can answer some of these questions for you.  To be honest honey, I am totally exhausted and need to get a little rest.

My brain is fried this week.  Quix, please help D17 if you can.  I am off to bed.  Thanks in advance, Quix.

Heather