It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-25-2013, 06:16 AM   #1
Junior Member
(female)
 
Join Date: May 2012
Location: Florida
Posts: 12
bha320 HB User
Failed tests, mysterious MRI...

Hello,

I am currently a diagnostic patient at Mayo in Jacksonville. My neuro is currently performing work up for MS as well as assessing my trigeminal neuralgia and hemifacial spasms.

For three years I have had random white "hypotense flair pattern" spots appear on my MRI- which I was told is "microvascualr damage from complex migraines". While I know this is medically possible, I also know these spots are often idiopathic. The current MRI report from Mayo said that MS cannot be excluded nor confirmed, due to non-bilateral pattern, though I do have one periventricular lesion- a commom spot for MS.

In addition to this I also have a failed BAER (brain stem auditory evoked potential) test, confirming the sensioneural hearing issues I have been struggling with- thunder in ears, hearing loss at times. This points towards brain stem damage, possibly due to demyelination plaques. Negative for accoustic neuroma.

My questions is that based on the BAER, MRI, a host of symtpoms and clinical findings (parasthesia among others), I do fit a neurological pattern though this seems atypical MS diagnosis. I get my final results in March. For now, just curious who else has seen these type of uncommon patterns in MS diagnosis.
Thanks!

 
Reply With Quote
Old 01-25-2013, 04:49 PM   #2
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,465
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Failed tests, mysterious MRI...

Migraines can leave damage, but the size of the scars will not likely equal those of MS or similar problems. Studies have concluded that MSers can suffer auditory nerve damage. This is one problem I have not yet had to experience. I do however cycle through times of pulsatile tinnitus which is or can quickly become annoying and interfere with sleep.

Until you get your final results, I would probably think "MS". If you plan on the possibility of MS, if the diagnosis is anything less- great! If it is MS, you can simply say, that is what I thought. I have not had TN either and I hope I do not. TN can be a stand alone or part of MS or ??

The great news is that you have run the tests and you have results which the doctors can use to render your diagnosis. My uncommon symptoms have presented, but not during the diagnostic phase- at least none that were mentioned to me. Still, you are at a great location and you should be able to get an answer soon. March is not too far off. Do let us know if we can lend you support in answers or prayers (you already have my prayers). Stay strong!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The following user gives a hug of support to MSJayhawk:
bha320 (01-25-2013)
Sponsors Lightbulb
   
Old 01-25-2013, 06:03 PM   #3
Junior Member
(female)
 
Join Date: May 2012
Location: Florida
Posts: 12
bha320 HB User
Re: Failed tests, mysterious MRI...

Thanks for the support!

You're one of few MS'ers to understand the BAER issue- it seems that this isn't too common among MS, but nonetheless does occur, so I am glad you chimed in- I was hoping it sounded familiar to another person. Does the sound in your ears ever increase with head position change or cause dizziness? When it strikes it is like a freight train in my head! If anything, I am oddly glad to be validated by an abnormal test in this area.

Also, is it thinking too far ahead to research the types of treatment for MS that way if I do get the final dx I am prepared? I won't consume myself of course, but I do like to be informed and as you said if it is something else then that's a bonus.

Oh and TN can be caused by MS, but it can also be related to structural issues or idiopathic.

My Mayo doc listed MS not otherwise specified as one of my active medical issues, but I am guessing that could be for medical ICD9 billing. Anyways, I am rambling... Thanks again!

Last edited by bha320; 01-25-2013 at 06:05 PM.

 
Reply With Quote
Old 01-25-2013, 06:43 PM   #4
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,465
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Failed tests, mysterious MRI...

No worries.

My pulsatile tinnitus sounds like the approach of a helicopter and then sounds like a helicopter flying off in the distance. The "thump-thump-thump" waxes and wanes. I resort to wearing a pair of passive ear protectors which I use when I hunt. I have tried moving my head to various positions, but to no avail. It has not, thankfully, caused any dizziness. I do get my best rest if I lie on my side with the affected ear downward. The quieter and fewer sound waves striking my ear drum, the better I sleep. The pulsatile tinnitus has mainly been one sided and most of the time it is in my left ear.

I think that you can get too far ahead in thinking, but as long as it is a healthy obsession and does not add to your stress, no worries. My remedies are all things which I have discovered while tracking my triggers. There are few treatments, if any, which are effective or are free of risks and side effects. I think I have done the best with all of my home remedies and learning to avoid my avoidable triggers. Also, because there are unavoidable triggers, if I know they are coming, I implement my "plan B or C or?? and when it hits- no biggie.

I think that MS is easier to handle when you have plans in place to implement when they are needed. Read, but do not over-obsess about MS. There is healthy and there is obsessive. Had a neighbor who obsessed over everything, and she never seemed to enjoy life.

Stay strong!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-26-2013, 03:58 AM   #5
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,773
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Failed tests, mysterious MRI...

HI there. It sounds like you have a great team of doctors preforming all the necessary tests on you, but there is one thing which hasnt been brought up. Mayo, or not- you will still need to meet McDonald Criteria to recieve a MS dx...and the only test which you have had which is even listed on the criteria is the MRI that I can see.

SO many factors go into getting a MS dx, and they are doing so many tests which are not standard MS testing- my guess is they are truly looking to rule out something else. Its actually a good direction to go- because MS is ultimately diagnosed by ruling out everything else.

Please keep us posted and I do hope you get your answers quickly and feel better.
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 01-26-2013, 08:21 AM   #6
Junior Member
(female)
 
Join Date: May 2012
Location: Florida
Posts: 12
bha320 HB User
Re: Failed tests, mysterious MRI...

MSJayhawk-
That seems like reasonable thinking- to have back up plans for when flares do strike. I have been doing that for several years now while in limbo anyways, so would make great sense to keep up with regardless of dx. For some reason DMD meds scare me, yet I shall cross that bridge IF I come to it.
For me it can be hard to not look things up since I am a medical researcher, so I'll keep an eye out about when to apply the "brakes". My hearing issues sound a bit different than yours, but I will try your tips. I know that cupping my hands over my ears seem to help as can high pitch white noise.

MsNik-

I have had other tests and discussed criteria with my neuro, I just didn't list them due to the nature of my question about the BAER. SSEP and VEP were both negative. LP shows increase in lymphocytes, yet 3 or less O-bands so according to Mayo this is a negative (they are quite stringent in this approach); negative on all accounts of CFS viral and bacterial inflammations/diseases. My MRI is inconclusive. My clinical exam showed two locations of neurological defect. My symptomology shows symptom occurances both seperated by time and location (disemination).

So, you can see why I am probable MS yet borderline inconclusive at this point. No other issue can account for my symtpoms, no tests can classically support the theory. Limboland!

Thanks for your inputs.

 
Reply With Quote
Old 01-26-2013, 09:20 AM   #7
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,465
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Failed tests, mysterious MRI...

I have thought about trying white noise. I think it would be great is it would work. As cupping your hands seems to help, I would think it not too far removed from my passive protectors. I am glad to see that you are proactive with this as well as with "what if" strategies.

I certainly am glad you found us here and I think we are blessed that you are here too.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-26-2013, 02:17 PM   #8
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,773
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Failed tests, mysterious MRI...

I wish you the very best with your testing and getting answers. Truly. You have alot going on and its definately not classic/ textbook.....but we are here for you to bounce things off of, and vent as necessary....please do keep us posted on any new developments.
Stay well.
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (1003), MSNik (526), Snoopy61 (58), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), LasVegasgirl (8)

Site Wide Totals

teteri66 (1180), MSJayhawk (1009), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (760), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 10:15 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!