Enhancing lesion- does it matter what size?

Hi,
I am still in limbo land. I just had my third MRI since 2010. In 2010, diagnosed with Menieres Disease which causes terrible balance issues for me. First brain MRI was done and a suspicious area and several scattered lesions was seen on the MRI. The MRI report said it could by a demylination disease or vascular disease, also an angioma detected in that area. I was instructed to see neurologist. The neuro looked at the CD and was very concerned due to location etc..
Spinal tap done - only one band present, neuro also ordered
MRI of brain and spine. Spinal Mri indicated lesions. Neuro basically told me to see a MS doctor. Went to great MS
clinic (3 hours away) MS specialist not convinced it was MS. He wanted to watch me and have another MRI in 6 months. In the meantime, I did experience some eye pain in one eye only, my balance issues worsened in the last two weeks. so I finally had the MRI done last week. Went back to MS specialist yesterday. He said the brain MRI showed some small changes, including one very small area that enhanced. He wants to have one of the radiologist at the hospital review the last MRI. Also ordered some more blood work and since I had some eye pain wants me to repeat evoked potential test.
After I have all the additional tests, he wants me to call him to review everything.
So my question to you very knowledgeable people, does it matter how small an enhancing lesion is? Sorry to be so long, would love to have some feedback please. The uncertainty is driving me crazy.

So far three doctors
neurotolarynologist (sp ?) said my balance issues could be caused by my lesions or my Menieres diesease
1 st neuro - basically told me it was MS
2nd neuro - watching closely -- not sure yet -- all puzzle pieces not in yet

[jazzgirl]

Well, from everything you've written here (and I'll be brief because it's late here , I'd say you should stick with your first neurologist! It's quackin' very loudly....which means "it's a duck!!"

[0485c10]

From the way i am reading your post. the 1st neuro referred you to the 2nd neuro, specializing in MS because the 1st neuro felt it was complicated/ambiguous enough he didn't have the experience to go forward.

now you are questioning the doc the 1st neuro sent you to?

and will go back to the 1st neuro--will he take you back as a patient?...has he suddenly gained the experience to make treatment decisions he was unconfident of when he referred you? what has changed with him?

maybe check that first.....

you will be required to transfer your records. so also check with the 1st neuro if he will disregard anything the neuro he referred you to(the 2nd neuro specializing in MS) wrote in his records for you.

docs can differ but check that before you jump.


i wouldn't want to be the 1st neuro, for legal reasons alone. he might like you very much as a person but it leaves him with his pants down in a court of law if he chooses to ignore the doc that specializes in MS that he referred you to and has more expertise in the disease he will be treating you for.

MS is a diagnosis of exclusion, when everything it could be is excluded and all that is left is MS, then its MS.

MS is a diagnosis of exclusion because MS rarely kills a person, where other things can kill if not treated...so everything that could be treated has to be excluded first.

its a stressful experience get a doc to prescribe some anti-anxiety meds while you get to a diagnosis. that 2nd neuro sounds very ethical.

i wish i could find that article in the washington post of the woman diagnosed with MS and begun treatment for MS until a doc finally looked closer and found it was cancer mimicking MS symptoms. In Gautemela, correct diagnosis was found in US but still it shows how many series conditions can mimick ms..

delayed gratification sucks but it is what responsible adults do.
if i find that article in the washington post i will post a link to it.

My vote is with the MS specialist. I think you are stuck with doc #2 unless you find a doc #3 of equal expertise in MS to doc #2. by the time you find doc #3 your ms may have advanced to the point that all the pieces fit.

maybe call the MS phone line to ask for neuro specializing in MS in your area. doc of equal expertise can differ.

1-800-FIGHTMS.

http://www.washingtonpost.com/wp-dyn...T2008030501704

there is also the 2008 MS differential diagnosing guide that you can download for free. it has a table of 79 red flags when thing other than MS should be considered...it will blow your mind how many other disease some of the more serious than ms it could be. also some less serious.

An MS diagnosis is is a little more series than popping a pimple. Sorry about that.

link to 2008 differential diagnosing guide. Hyperlink to download for free on right side.


http://msj.sagepub.com/content/14/9/1157.abstract

[0485c10]

I know someone who had conflicting doc recommendations who got her insurance to approve a 1 day, no test evaluation at Mayo. Where the mayo doc's reviewed her records and made recommendations for future tests & treatment she should have done at home..

...the mayo doc's agreed with her doc that said it was MS but the mayo doc's added fibromyalgia to the diagnosis. they recommended she begin treatment for fibro & and the mayo doc's also recommended she get a neuropsyche exam as a baseline.

her neuro who had diagnosed her MS gave her a referal to a Rheumatologist that could treat her newly diagnosed fibro and orderd the neuropsyche exam and continued to treat her MS.

my vote, given the human body is a very complicated system.....give the 2nd doc some time. or find one of equal experience with MS.

[jcrain9663]

Since no one seems to have answered your question, "Does size matter"?

The answer is no. Shape and location appear to be much more important in diagnosing MS than the number. I have "less than a handful" of lesions, but was diagnosed with PPMS after 3 years of limboland. SOMETIMES smaller and few lesions (along with whether or not you have relapses) points to PPMS, but it takes time to make that differentiation.

It sounds to me like the MS specialist is just being thorough.

[Bob698]

Since no one seems to have answered your question, "Does size matter"?

The answer is no. Shape and location appear to be much more important in diagnosing MS than the number.

There also seems to be more Neuro's getting into the "MS is MS" mindset and not concentrating on what kind of MS you're dealling with, just get the treatment started ASAP and see how you deal with it once they're sure it is MS.

[Tawanda]

Since no one seems to have answered your question, "Does size matter"?

The answer is no. Shape and location appear to be much more important .

...at least that's what I tell my husband! Sorry I just couldn't resist!

[jskmssss]

MORE INFORMATION..THANKS FOR RESPONSES

Sorry, this is soooo long. Thanks everyone for responding to my post. I really appreciate the feedback. I don't post much but I am on the boards several times a week.
I don't know what I did but I had typed this long response and must have screwed it up because it never was posted.
So here I go again...

Tawanda, Thanks for the laugh! I needed a good laugh.

Jazzgirl, Thanks for your feedback. I hate being in limboland. I wish I could just have a definitive answer. I wasn't chosing a new Neuro, I just went to a MS specialist
at the Neuro's request. I thought that was part of the process that the MS specialist just needs to confirm DX.

0485c10 - Wow ! Thanks for your informative and lengthy response. I will try to fill in with more details and make it clearer.

First Neuro - DR. C., suggested going to a MS specialist. He didn't choose the MS Dr. When he told me to see one, I said I would go to one in NY. Primarily because my insurance is widely accepted there and also there are excellent MS facilities in NY.

MS Dr. K. wants both drs to be involved in my care. Dr. K wants to follow me and for me to see him annually. He suggested that eventually the local neuro can keep a close eye on me.
I think if I had a definite DX, he would probably want to have input in my treatment. I have tremendous faith in the
MS dr. He was very kind, thorough, had an excellent bedside manner and took his time with me. On the other hand, I also like my first Dr. too. I don't believe I need to make a choice. I am hoping to continue to see both of the drs. At this point, I would hate to see another Dr. and start over. I like the two that I have. I think my situation is
complicated because I have a few issues going on at once.

You are correct I don't want a dx made until everything else is ruled out and 100 percent sure. As you well know, limboland is a tough place to be. This past year has been a brutal one. I lost my mother, my husband, lost his father who lived with us for 16 years. I was also dxd with Menieres in 2010. Menieres Disease usually can lead to significant hearing loss. I am already completely deaf in my right ear and I have the Menieres in my left ear so going deaf is also another fear for me.

I came home from seeing Dr. K. and of course a zillion questions running through my head when I came home.
On one hand, there was a change on the MRI since the last one but he stressed it was suttle changes and the area that
enhanced was very small. I was wondering if it was very small maybe it doesn't even count. I went to bed
tossed and turned, couldn't sleep. I already have a script for
Xanax, I got that when the Dr. first mentioned MS.

I posted hoping to hear back from some wonderful people who can really relate and understand what I am going through and maybe share similar experiences. I don't think
anyone can understand what day to day life can be until you walk in someone's shoes. I hate to complain to others. Really does anyone want to hear about all our bizzare symptoms and even be able to relate to what we are going through. I feel like everyday is an adventure. I have fallen several times and loose my balance daily.

I have to be patient and wait for the Drs. to determine what is going on with my body. I am so greatful for this board and all the
knowledge and personal experiences that are shared.
I Hope one day they find a cure for this dreadful disease.

[0485c10]

Good Luck...i'm certain whatever you decide will be right.