Newbie here NEED FEEDBACK

[jskmssss]

Hi Everyone,

I am a 49 y/o female who was recently diagnosed with Menieres Disease.  For those not familiar with Menieres, classic symptoms are loss of balance, fluctuating hearing eventually leading to hearing loss, vertigo and tinnitus.  One of the many tests I had was a brain MRI to rule out an acoustic neuroma.  Fortunately no tumor but I was told to see a
neurologist because something showed up on the MRI.

I have loss of balance daily and do not feel steady on my feet most of the time.  I was diagnosed with peripheral vertigo after my first aptmnt with ear dr.  

Last week, I went to see a neurologist, I expected him to look at the cd and tell me all was fine but instead he showed my husband and I several white patches and one large bright patch by the ventricle which he said could be indicative of
MS.  He said it didn't look good at all and was of great concern.  Two days later, I had another brain MRI and spinal MRI.  Tomorrow I go for another test V- - , sorry don't remember the name but it has something to do with vision and Tuesday for a spinal tap.  Below is the written report of the first MRI done in April.  I do not have the results of the new MRI.  Any feedback would be appreciated.  I am consumed with worry over this.  I was just coming to terms and acceptance Menieres.  

After neuro exam, he said My legs were stiff and balance was poor.

There are scattered hyperintensities on T-2 -weighted and FLAIR images in the periventricular white matter, centrum semiovale and subcortical white matter bilaterally, most confluent in the right frontoparietal white matter.  As the corpus callosum is not invilved, these are non-specific and may be seen with small vessel ischemic disease (particularly if the patient is hypertensive or diabetic) demyelinating etiologies (including Lyme's Disease or post-viral)
or vasculitis (including migranes).  Clinical correlation is recommended.   I had lab work done - negative for Lymes, negative for Syphillis and I am not a diabetic.

IMPRESSION
1.  Scattered hyperintense foci in the supratentorial white matter on T-2 weighted and FLAIR omages which are nonspecific, as above.

2.  Right frontoparietan venous angioma

[figuerpa]

I think Lulu and everyone else has said it all. We have all been in limbo at one point or other, me I have been in limbo for 2 years now. At least you have a neurologist that is taking action now and not playing the "wait and see" game.

I hope that these tests reveal some kind of diagnosis. Not hoping you have MS but as the others have said, there are DMD's out there to slow the progression if that is what you have and the meds they can give you to treat your symptoms in the mean time will help alot.


Good luck and keep us informed,
Paula

[Lulu54]

Hi Jckmsss and welcome.  This is a very sympathetic and well versed community when it comes to all things MS.

Panic is a normal reaction to hearing about MS, but please pause and understand that the  MS of 20 years ago is not the same looking disease these days.  There are a number of disease modifying drugs (DMD's) available that help to slow the number of relapses and rate of progression.

In addition to the DMDs there are also a number of drugs available to help with symptoms.  The  lving with MS is not necessarily bleak so don't jump to the worst case scenario.  

the best thing you can do for yourself is learn more about MS - it is a complex disease and can be confusing.  They more you learn the better prepared you are to have informed discussions with your neurologist.  

We have great health pages here, all written by members of this community.  You can access the index here....

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

I'm not a medical expert by any means but the locations of your suspected lesions in your brain sound like they are located in the prime areas that are occupied by MS lesions.  

There are lots of tests that must be done before MS is declared - it is a diagnosis of exclusion and all sorts of other disease must be eliminated as possibilities before a decision  can be offered.  That is why you have more tests scheduled for this week.

Good luck with all of this - I certainly hope you don't have MS, but keep in mind that we're here to help you through this next  phase.  I'll look for you around.

be well, Lulu

[willowwoman7]

Hi! The first thing you need to do is NOT panic. There are medicaitons to delay progression of MS and it seems like they will have some answers soon. If you have a faith, take it to your God in prayer. We have all been in limoland at one time or other. The wost part is the not knowing and waiting. The most important thing is that they find out what is wrong and begin treatment. Sending a prayer your way.

[michelleislay]

hey there,

well, the good news is that you have a neurologist who is taking you and your conditions very seriously.

i am a newby also, so not very qualified to answer to all of the above, but the test you probably had done was a visual evoked potential and i believe it is a test that can help to identify M.S.

it looks as though you are going to begin going through a process of elimination.  i don't want to make any predictions but to say that you are definately on the right path so far as diagnostics go.

i'm sorry you are going through so much, and if it's any comfort at all, i have had some form of vertigo (as of yet undx'd) for many weeks as well as other symptoms and i feel your pain!!  it really does take a toll--but don't lose heart!  you will find help i believe with the neurologist you have and that is worth it's weight in gold.  

take good care of yourself during all of this and please keep us all updated.

xo michelle