I don't know. All I know is my 2 biggest symptoms, show no demyelination on the MRI, so I can't figure it out myself.

i had three weirdly large white "balls"/spots on an mri 5 years ago. unfortunately, despite my horrible neuro test, the quack i saw told me to "come back when i got sicker"

well, now i am and have an appt at a neuro/ms specialist in may.

all i can say, is don't let them brush you off; had i fought for answers, i might not be as sick as i am now.

cheers

Rsimmons,
That neuro is clueless! Go to an ms specialist, this Dr. Has not done her homework! That statement says it all! Good luck, please get a second opinion.

Kevin

Typically, the white spots in certain locations define the symptoms that you have. Different parts of the brain control different parts of your body. No one individual may have a set pattern of white spots to be dxed with MS. Here's an excerpt from my book "MS for Dummies" which sort of addresses your concern:

No test or combination of tests allows a physician to state without question that an individual has MS. The changes in the nervous system (identified by placques) that are typical of this disease are difficult to identify without actually dissecting the brain or spinal cord (which can only be done when someone is dead!) Some appearance of numerous areas of injury scattered throughout the nervous system, including some in the spinal cord, strongly suggests MS. Plaques are randomly distributed. A neuro presented with an MRI report that details a few "nonspecific white matter lesions" that are "compatible with MS" is often frustrated with the lack of sensitivity and specificity of such a description. For this reason, imaging findings need to be described in detail, and preferably referenced to one of the published set of diagnostic criteria. These criteria require 3 lesions with 2 of the 3 following characteristics: infratentorial location, periventricular location, and lesion greater than 6 mm. Maybe your neuro was referring to this characteristic of MS, the locations? Like if you had been experiencing ON, a certain specific location of the brain would have a plaque/lesion. However, the specific patient's neurological history and clinical findings must be CORRELATED with the imaging to establish an accurate diagnosis. The MRI results alone are not a reason to tell a patient that they do or do not have MS.

A diagnosis of MS is made on the basis of clinical findings by using SUPPORTING evidence from ancillary tests such as cerebrospinal fluid (CSF) examination for oligoclonal banding (spinal tap/lumbar punction) AND MRI.

I found a good web site when searching for additional information about your post, you may want to check it out:

http://emedicine.medscape.com/article/342254-imaging

So, I think you need to discuss in detail your neuro's understanding of your MRI or find another doctor, or both!

Oh Thank you all very much.

I have another appointment with her in March. At that time I will ask her to go over her "findings" with me in more detail. And if she makes the same statement, I will ask to be referred to neurologist/MS specialist, or at least, another neurologist.

Sincere Thanks,

rsimmons

I have the same type of situation and have had a working diagnosis for over 9 years. I have many small pin point lesions deep within the white matter of my brain (all inactive) and a larger one on the corpus collosum (again inactive) and many spinal plaques and disc compressions which could be MS. BUT my symptoms are there and although my idiot neuro (lastest of 5 who is an MS specialist) says I either have benign MS and 5 min later says after the exam that maybe it is going into progressive. He hasn't a clue. I have been on Copaxone for 9 years and he says maybe the Copaxone "cured" me but I still have a lot of symptoms and there is no CURE. So keep going with your handy dandy MRI in hand until you find someone who will diagnosis and treat you to your satisfaction. This is a tricky disease and each and everyone one of us is different. Sorry no one size fits all. BUT you will get a working diagnosis with treatment of your choice and you must be your own advocate. Don't read too much over the internet or in books or you truly will go crazy. Explain your symptoms, be rational and MAKE them give you what you want. Good luck and keep smiling - look how many people are on this site so we all "made" it so to speak and we will continue forging on until there is a cure. Enough of this band aid, let big Pharma make big money stuff- time to find out what causes this and cure it!

yeh-- get another opinion- they are clueless- hugs!!!

Thank you Ichoppel, auntilyn, and tickey.

I feel so much better after receiving your comments and spirit of support.

My health has continued to deteriorate for 3 years. So I asked this neuro if she would consider my history to help her make a diagnosis, and she said no. She stated that neurologist base their diagnosis for ms strictly on science. Then she started offering other meds for my pain. I told I I was already on serious meds that I am not sure are helping me at all, so I do not want other meds, what I want is to find out what is wrong with me. I said are there other tests we could do. She seemed reluctant, then said, "I guess we could." When I asked her the test she said the next step is to do a Spinal tap, but no matter the result, it still wont prove you have MS." So I said in that case, let's put a spinal tap off as last resort. What other tests are there." She couldn't seem to name one, then she said something about a nerve test to make sure my path from my arm to my brain is clear. If this is the test I'm thinking of, I already took it and it was fine, showing that the numbing/tingling in my arm and hand are not due to a pinched nerve.

Let me ask is there some secret code between doctors not to dx MS and Fibromyalgia? I find their behavior regarding these illness very weird.

" She stated that neurologist base their diagnosis for ms strictly
on science. Then she started offering other meds for my pain. "

I would DEFINATELY find another doctor, and soon! This one sounds like a quack, sorry to say. Today neurologists rely on aperson's medical history, the neurologic exam, and a variety of laboratory tests to help confirm the dx and rule out other conditions. There is the McDonald Criteria for baseing a dx on, not science as your neuro referred to. Also, offering you more pain meds won't help you in the long run. If I had received my dx when I first started having problems I wouldn't have progressed to the point I am now. I wish I knew better back then to fight and become my own advocate! Educate yourself and go in fighting, or run to the nearest exit!

The established protocol for MS diagnoses is MRI, Spinal Tap, and Evoked potential testing (which many doctor's don't believe hold any water these days), and blood tests (to rule out other causes for neurologic symptoms, such as Lyme disease, collagen-vascular diseases, certin hereditary disorders and HIV/Aids) (all in addition to a neurologic exam)..

I'm not going to go through all that you can do to explain to her how to diagnose you, you need to look up some stuff in books or on the internet. Visit the MS Society Web site and read, read, read.

Hello, lchoppel

Thank you again for the sound information. I have had all the blood test you mentioned and they were normal. The Evoke Potentiality Testing was done as well, I was told it was normal. I come with 3 years solid history, But finally, and because the Evoke Potentiality Test was normal I was sent to this Neurologist. I thought--Finally, vindication. Then when my MRI returned with all these white spots I felt, "You all see, I'm not just crazy." Then she shot me down. I have all these symptoms that fit into MS like a puzzle, and now the white spots are there! But this neuro is going to disregard my medical history, and say, "We don't know what your white spots mean. They could be caused by headaches. She said, we can schedual and MRI for 8 months down the road and see if there is a difference. But I have had 3 years of worsening health, I am debilitated by it. I want to know why now, or at least what your best guess is at this point. Or since all those other tests have been run, tell me what you know it is not. Do you know what I mean?

I'll tell you guys, I was feeling very low until I received your feedback. Thanks again.

I was diagnose Feb 1 with MS. My doctor was going to wait until 6 months and do another MRI. I had the LP and MRI,and medical records that dated away back to 2001. She said she'd rather seen the xrays herself. So I went to work. They had destroyed all my medical records from 2007 back. I looked back into my medical records I had,and found some old xrays from 2004. That really helped me & the nuerology. She had something to see the different from 2004 to 2010. I'm having a treable time. I'm losing my hair,the pain. They say you don't lose hair with MS. Now where do I go!! See if you can get copy of your old MRIs of the brain. That may help.