The 5%ers out there

[Torn]

Hoping this doesn't bring up too many negative comments, but I am desperate for support and guidance.
Sooo... I am looking for the five percent of you diagnosed without any lesions on their MRI.
I have not had any lesions on my MRI but had pos lp and evp. I'm having trouble finding a doctor who will treat me.
Does anyone think this could be something related to ms, or an unknown disease?
How many of you are on dmds and are they working?

[Wordsgood]

I'm sorry, Torn, I'm not one of those 5 percenters. It took decades to get diagnosed but when they did do an MRI my head lit up like an Xmas tree.

Just wanted to pop in and wish you luck in finding both answers and doctors who will listen to you.

Torn-

Try the Mellen Center in Cleveland.

Early on, I did not have brain lesions only spinal "shadows" and spots on my brain that were not real conclusive. I also have bouts of migraine and they can make similar lesions.

I am allergic to gadolium which now make MRIs risky.

I do however have a family history- I am the fourth known case of MS.

I respond to IVSM and was on Copaxone for 6 years. I also take Neurontin, Ritalin, and have a ITB pump. I have bilateral AFOs... I have fulfilled the McDonald Criteria!

I have taken Ampyra and Amantadine but both eventually stopped being effective.

I also am low in B12 and Vit D and take supplements of both of those.

I like the Mellen Center. They have been fully supportive with me asking to be tested for everything else imaginable to avoid admitting MS.

Take Care.

[lusciousleaves]

Hi Torn. I know of only 2 people that have been diagnosed without MRI lesions. One used to frequent another board, and was only diagnosed after her MRI showed brain atrophy. The other, was having a severe flare and diagnosed before the McDonald criteria were established.

I'd still like to know where this 5% number comes from and how they get diagnosed. It seems to me, with the current criteria, 0% gets diagnosed without MRI lesions.

Best of luck on your search. If you find one, can you check back and let us know you did?

[SNOOPY]

The other, was having a severe flare and diagnosed before the McDonald criteria were established.

Me?

Hi Torn,

I am one of the 5% who was diagnosed with a negative MRI. I was diagnosed based on "rule out" of other conditions, neuro exam, symptoms and a positive LP. I was in a severe exacerbation at the time.

There was a Criteria, even then, for diagnosing MS -- The Poser Criteria and I didn't meet that criteria when I was given a definite diagnosis. However, I did meet it one year later when I had a second severe exacerbation.

Torn, have you tried getting a second opinion. The positive LP and positive VEP would point more to MS (unprofessional opinion). Have you had a MRI of both the brain and cervical spine (neck)?

[JerryD]

Glad that you raised this point. The advice I will give you comes from personal experience. I saw a neurologist who suspected MS after ruling out most other things. Then, I asked him, point blank, if he would agree to send me to the Univ. of Penn for an opinion.
This is the course I suggest for you to take. Get yourself to a university hospital's neurology department. And don't back down until you get some satisfactory answers. Good luck

[suziq38]

I may be one of the 5% ers.
My lumbar puncture was negative, as was my Brain MRI.

Nothing but myelopathies, and I am extremely tired after 12:00 P.M. most days. I like to put my feet up to rest, and my legs are heavy in the afternoons.

I used to exercise, but I am just too tired. My back also hurts.

I read an interesting article from a physician publication called "Up to Date."
This article was entitled "Diagnosis of Multiple Sclerosis in adults."
on page 9, at the bottom it talks about these patients:


"Eventually there remains a group of patients who do not fit into these catagories and whose spinal MRI scans are repeatedly negative. Visual evoked responses, CSF fluid olingocolonal bands, and head MRI scan show no sign of demyelination elsewhere. No firm diagnosis is possible in these individuals. Minor clues that MS is present may be the presence of a Lhermitte sign (a term for electric shock-like sensations that run down the back and/or limbs upon flexaion of the neck) that has come and gone or by undue sensitivity to elevated temperature. The degree of compression of the cervical cord by intervertebral disc disease is often an issue in the middle aged patient, since a majority has some degree of disc disease. There is little doubt that some laminectomies have been carried out for cervical spondylosis where MS was the final correct diagnosis."

WOW. This is my predicament, so possibly I may have MS, regard less of my test results.

The article goes on:
"Progressive myelopathy due to MS is part of the primary progressive MS group and carries the poor prognosis typical fo that group. Choice of therapy is difficult. Some patients do better for a time with monthly IV glucocorticoids."

I have had TWO neuros tell me that I DO not have MS at this time. I am going to see a famous MS specialist in the Los Angeles area later this month. I have had to wait to see him for two months. I am wondering what he will tell me.

I don't want MS, but the surgeons are telling me that I need a laminectomy surgery on my upper cervical spine. The second surgeon told me that he wanted to have MS finally ruled out by an MS neurologist expert before he does the surgery.

I don't blame him. I hate risking the worsening of my myelopathies, but I would not want a laminectomy done when in the end it was MS and it needed IV therapy instead.

I am praying that I don't have mS because I am 56 and possibly may be part of this progressive group of MS patients.

[Skinny]

I didn't know there were only 5% of us wow!

I am Dx with MS I have had ON twice, woke one am two years ago and was numb all over couldn't walk for a over a year.

I sometimes wonder myself is it really ms?

But I have every other sx there is for MS. There are some Drs out there that will not Dx without the pos MRI but I had one who did.

I have never had a pos MRI as of yet. I would feel better with the Dx however if I had at least one. But my optic nerve is scared badly and that's enough for them I guess.

[Torn]

I know I'm not the only one going through all of this and it's very difficult. Not that any of us want the ms dx but if it is ms we all know how important early dx is. Treatment is currently my biggest hurdle as of now. I need a light at the end of a tunnel or a glimmer of hope.

[acaverly]

I have had two mri's and had two lesions but they still will not diagnose me with ms. I have opthalmoplegia in my right eye It has not improved in a year. I am now seeing a nuero opthamoligist who also sent me for a mra because he thought I had third nerve palsy. That test was negative and now he is thinking it may be lupus or another autoimmune disease. They know I have inflammation somewhere and are treating me with prednisone right now. He still has not totally ruled out ms. My ana tests were high but that is all they told me.

[Torn]

Best if luck with finding an answer. I pray that it isn't a long painful ordeal as mine has been.

[Kenmore]

I don't know what I am, but here is what I'm told..

Dec 2008 I had a major episode...It took me out for a few months and then it took another year to heal.

At that time, my neuro diagnosed me with Transverse Myelitis, which is like MS (demylenation occurs in one area on the tspine typically...there is no second episode with new lesions)...I only had visible lesions on my T8-T10. He did not diagnose MS at that time because he and the radiologist did not find lesions on my brain.
He only did my tspine and my brain...not my cervical spine...

-I had another episode in 2011, but..
A year earlier in 2010 I consulted with the most respected MS neuro in my area based upon another Dr's recommendation. She told me for a year that I had MS - even without MRI's...But I was in denial. The Dr. is telling me I have MS and I'm telling her I don't. Here I have a diagnosis without hardly any of the typical MS markers...

During my 2011 episode, she did MRI's with contrast of the brain, cervical and thorasic spine.

My results were:
-my original T8-T10 lesion (non-active)
-2 tiny tiny little active lesions on my cervical spine...the radiologist actually did not see them
-At this time there were no old lesions on my cervical spine..so really my first episode was only on my thorasic spine.
-my brain has 'blushing' in one area...which can be attributed to aging, but can also indicate MS.
-I passed the evoked potentials with flying colors.
-The only test I did not do was the LP.

So, in theory, I may be one of those 5%. I do not have any real lesions on my brain. I guess they say now that you don't actually have to have lesions on the brain for an MS diagnosis...but there should be more than 1 and in different areas. I don't fall into that unless I did have a tiny lesion on my cervical spine that was not discovered because I did not have a cspine MRI the first time. It would have had to have been so tiny for it not to show in the second MRI. Although I had a lot of symptoms that would indicate lesions on the cspine. So one could say that I had an MS episode in 2008, but only 1 lesion.

If mine were left to a neuro who is not a specialist in MS, I would probably not be diagnosed because they would see nothing during the second episode but the original lesion on the tspine. The radiologist didn't see the cervical lesions the second time - even with contrast..nor did they mention that the tiny bit of blusing could be anything to do with demyelination.

I know my story is confusing, but I hope it makes a little bit of sense.

I did a lot of research on TM. They say that TM can be the first manifestation of MS. But if there is only one lesion MS is not typically diagnosed until a second episode - with a second episode you'll have a new lesion. So now you have multiple lesions = multiple sclerosis.

So it is definitely helpful to have a neuro who is specialized in MS and can interpret MRI's and see things that a non-specialized neuro or radiologist cannot see...while combining syptoms and history. That is tough to find.

[Torn]

Are you on Dmds? Have you ever had eye issues? Might be nmo? But not if you haven't had eye issues. Usually it would have progressed by now too.

[Kenmore]

Are you on Dmds? Have you ever had eye issues? Might be nmo? But not if you haven't had eye issues. Usually it would have progressed by now too.

Avonex since March 2011. No eye issues so no brain lesions.

I didn't go into my symptoms from my first episode or my second....but they were very bad. Let me know if you'd like to know more about those symtoms.

[suziq38]

"......So it is definitely helpful to have a neuro who is specialized in MS and can interpret MRI's and see things that a non-specialized neuro or radiologist cannot see...while combining syptoms and history. That is tough to find."

You are so right.
I am patiently waiting for my appointment December 21 with an MS neurologist at a local teaching hospital. He is older, and has seen a lot of patients with MS and has conducted numerous studies on the treatment of MS with various new, experimental drugs. He is considered an expert in his field, and so I feel fortunate to have an appointment.

I had the first set of MRI's done at a regular imaging place.
When I asked them WHO was going to read my MRI, they thought that I was crazy. I wanted a very competent radiologist to read it.

I then decided to get another opinion at a teaching hospital that specializes in neuro. They had about 6 MS specialists on staff. They take months to be able to see, they are that busy.
Anyway, the surgeon had me take another set of MRI's, and this time a neuroradiologist read and evaluated my MRI's.
What a difference.

I can not move forward with my cervical spine surgery until the MS neuro rules out MS.

I agree.

In the meantime, I am in pain, and sometimes it is difficult to walk in the afternoons.