Lesions and diagnosies
 

HI all,

I had a lesion located via MRI on my cervical spine in november of last year, i was then sent for a round of tests including a lumbar puncture,eye nerve test, bloods, and an MRI on my brain. The lumbar puncture came back positive for oligoclonal bands, bloods and eye nerve tests came back negative and the MRI came back showing 12 lesions on my brain - the radiologist said that these were not the usual size or site of ms lesions due to the treatment i had undergone for the lesion on my spine, but he still felt they were demylenation. Initially my neurologist diagnosed me with MS and suggested going into clinical trials. Then changed his mind saying that he wanted to wait until i had a second clinical episode of ms before beginning any treatments. I am confused as if these lesions are not from ms, what would they be considering all the other test results and the radiologists report? Can anyone think of any reasons for the change of heart? My neurologist is not great at explaining things and makes me feel stupid when i ask questions or tell him about things such as my legs going numb when i walk, falling over and excessive fatigue.

Hi Molpep! Welcome.

I don't know why the change of heart. It may be that he is stick with the criteria for a definite diagnosis of MS. I did not receive mine right away either despite the lesions. I had the lesions but no clinical findings for a few years. Even at that it was my second flare of new/old symptoms that got me diagnosed as definite MS.

Should this be definite MS, please make sure you find a team of doctors that you can work with and who can work together. You should feel comfortable asking questions. You should never leave the office feeling stupid.

Please let us know how you do. There are a great many of caring people here at NT with a lot of knowledge and experience. We are here to support you.

Thanks so much! This is such a good forum...makes me feel not so isolated! X:)

I recently read that migraines can cause leisons in the brain. I don't know if you have a history of headaches. HTH

:hug:

Hi there molpep,

I can understand your confusion. To get an MS diagnosis must have been mind blowing in itself, but to have it ripped away again so soon, must leave you in a big quandry, not having any clues at all as to what's going on.

I believe that brain and cervical lesions can be caused by other things apart from MS. Migraines for example, cause brain lesions........so please give your doctors time to try and put all the pieces together, so they can come up with the correct diagnosis and the right treatment, for you.

Unfortunately the road to doiagnosis of any kind can be long and laboured. Hang in there. We're on your side! :grouphug:

Just clarifying how this all began - In November i went to see my gp about the fact my entire body from the chest down had gone 'numb'. She sent me to a neurologist.

You could get a second opinion.

Brain lesions can be caused by more than just MS but I am not aware of anything but MS causing cervical spine lesions - I could be wrong though.

And as others have said your neuro is probably going by the McDonald Criteria and doesn't feel you "fit" yet.

Hmmm I'm actually reading this differently. I'm thinking that he is stuck on the criteria for clinical trials. Often, that criteria is very strict. If you have some atypical findings, you would be automatically excluded. The MacDonald criteria is usually pretty strictly adhered to for trials, but less so by neuros just to dx you and put you on standard mainstream treatments.

Is your neuro willing to put you on standard MS treatments like the CRAB drugs?

hey Mol!!

Call the doc and ask for clarification. If you have to make an appointment (to rule out the nurses clarifying FOR him!) There shouldn't be any problem sitting down with you and going over all your questions and concerns....

It is not uncommon to get the run around in MS! They really just want to make sure you have it and not something else!

The few that get dx right of the bat are really not the norm....

Take Care and I'm glad you found us!

Transverse Myelitis has the same spinal lesions, and it presents exactly as molpep has described her Nov attack. It can be idiopathic, but ends up as MS dx a good % of the time too:

http://www.ninds.nih.gov/disorders/t...s.htm#41903234

O-bands can be found in other diseases, as can various shapes/sizes of brain lesions. He would want to be sure they are the "MS" variety . . .

I think you are right, Snoopy, he may be waiting for the second attack or change in MRI (McDonald criteria).

Cherie

According to the report the O-bands are the ones typical to MS...I am going to find an MS specialist to get a second opinion i think to get some clarification...my current neuro does not seem keen to clarify too much...he knew i was confused when I left the appointment because I told him I didn't understand anything that he had said and he said "see you in 4 months".

molpep, I think that a second opinion would be a good idea and since MS is suspected, I would go to an MS specialist.

My MS specialist concurs with Cherie -- he told me that 90% of all demyelinating diseases turn out to be MS.

You're good, you know that?

:cool:

I'm just thinking, what are the odds anybody would have C spine lesions from Tranverse Myelitis, plus brain lesions (a dozen of them) from something unknown AND O bands from yet another cause?

If I were a neuro, MS would be the horse and not the zebra here.

Either that or Molpep should win a prize for collecting the most rare disorders in one day.

:winner_first_h4h:

All that said, it is okay for him to watch and be sure before dx-ing. I wish he would not have given the dx and tsaken it back. Once you say it, just stick with it unless you were wrong about it. Or don't say it at all.

I am "good" . . . what's your point?

I fully believe she has MS, just like we all believed I had MS when I had my first TM attack. As I said, a good % of the time TM does lead to a MS dx. However, my neuros followed the criteria (as I think hers are), and I waited 12 yrs before I had another attack. That happened to be ok by me, but I did not mean to imply that it should be to her. :cool:

If you have followed my posts, I ALWAYS recommend a second opinion, whether we are dx at first or not. Others had already said that though, so I didn't think it was necessary . . . :rolleyes:

Cherie

Thanks everyone. My torso has started to go numb again today so I have called a friend of mine who has managed to get me in for an appointment with an MS specialist. Really appreciate all the support and help trying to clarify! :hug:

Molpep,

I initially tried to answer your specific questions, which were:


The only other condition that I knew of which has the same kind of spinal lesions is Transverse Myelitis. There may be many other conditions, but I have not researched that.

Transverse Myelitis, which can be the first indication of MS, may be CAUSED by several conditions. NOTE: The following list includes only those conditions (that I am aware of) that ALSO may have onocological bands present:

Systemic lupus erythematosis (SLE)
Sarcoidosis
ADEM
Bacteria
Bacterial infections
Multiple sclerosis

http://www.myelitis.org/tm.htm

http://www.diseasesdatabase.com/resu...ClassSort=True

The definition for “lesions” is very broad, and simply means “damage”. Lesions can be found anywhere on the body, but in this case the lesions are in your brain. If they suspected the lesions were the “demyelinating type”, the following is a list of some conditions where they might be observed:

http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm

It seems his initial conclusion was that this is MS, but he is now questioning whether your brain lesions are the right size/shape and/or location for MS. This dilemma is actually quite common . . . but the other testing evidence seems to make the case for MS fairly convincing.

Some neurologists will treat “Clinically Isolated Syndrome" (only one attack) with MS disease modifying drugs (if that is what you are wanting immediately). However, it MAY still come down to needing a second attack before you get the final confirmed dx.

Good luck with the specialist.

Cherie

Thanks Cherie, all those other possibilities like lupus, bacterial infection, etc have all been ruled out. We'll see what happens, but I really do appreciate you trying to help me make sense of it all. It has been terribly confusing and upsetting. I have been having numbness come onto my legs when I have been trying to walk since i finished on the IV steroids, and last night my left arm went numb which was followed by my trunk going numb today. It usually settles down after a couple of hours though. Just makes it hard to get fit and healthy. If they could give me something to manage that i would be grateful!

Oops! Your right, Cherie - Thanks!

Confusion? I went to the doctor because the symptoms I was suffering indicated Mononucleosis. Nope dx`ed with Bronchitis.

Still continued to get sicker, mono spot test had been negative. Sent to the hospital for more extensive blood work, maybe lyme, west nile, anything? and a chest x-ray to check for pneumonia.

LOL dang? Mono! Then Chronic fatigue syndrome, then when my walking became to bad to ignore a neuro and mris.

First brain mri, abnormal, small strokes, not severe enough to cause walking problems.

C-spine mri, lesions clearly seen at c-2 and c-4, old injury, myelitis, myelopathy, a botched LP, then a new neuro.

I had told the first and then the new dude I thought PPMS, ignored, a negative lp. Refusal by both to order a t-spine mri second refused to order repeats of the brain and c-spine also. His comment? T/M no further testing is needed or necessary.

We disagreed on that and I went to a specialist, more testing, repeats of B-C and a T-spine MRI and a dx of PPMS. Evidence was there, they have to be willing to look!

The disease modifying drugs we use are not intended to manage ongoing symptoms, and often make us feel worse initially (until our bodies adjust). The idea though, is that they may help to manage the disease process by hopefully reducing the number of relapses (attacks) we have . . . which in turn could ultimately result in a reduction of symptoms from attacks.

Each of the options we have MAY work for one person and not at all for another; it's trial and error to hopefully find the right one that works for YOUR body.

Are they not giving you symptom management drugs right now though, i.e. for pain, tingling, etc.? I don't happen to take any of these drugs, just because I am too sensitive to medications, but normally they will offer relief with or without a confirmed dx.

BTW, an attack is defined as "new symptoms . . . or worsening of old symptoms . . . lasting longer then 24 hrs". There must be 30 days between accelerated symptoms before it would be counted as a second attack (. . . those aren't the exact words, but the easiest way that I can personally explain it).

For as long as it takes to get in to see the specialists, it is probably a good idea to research your drug options to determine the best potential fit for you. The NMSS has some good information in this regard:

http://www.nationalmssociety.org/sit...ures_comparing

I found the following website helpful also, for another perspective:

http://www.themcfox.com/multiple-sclerosis/ms-drugs/

Cherie

I was given no drugs to manage the on-going symptoms, he just said to do what I can and stop and wait for the issue to pass when it comes on...problem is the leg weskness/numbness can last for a few hours! Not feasible if you're trying to walk a german shepherd dog! Tingling is the one thing that happens everyday to varying degrees...it can get really very uncomfortable which i can deal with, but the leg/arm/trunk numbness is not as easy to put out of my head. my trunk is still numb from yesterday which means it's been going on for about 30 hours now. Really I can deal with anything as long as i know what it is i am dealing with. i want to be able to exercise - or at least walk my dog - without incident!

Numbness is considered an sensory symptom. Steroids are the only thing that might help. Because it is a sensory symptoms many neuros will not treat it with steroids. There are not any symptom management med for numbness.

Unfortunately, it's one of those symptoms that you need to adapt to. Numbness can go away on it's own but for some people it is a permanent symptom.

Here is some information about numbness ---
http://www.nationalmssociety.org/sit...ebook_numbness

Using a mobility aid, cane or walker, would allow you to remain active and hopefully stay safe.

molpep, I don't know if you've ever tried acupuncture or would be open to it, but this is something that might help with numbness. I had a major improvement with my tingling this way.