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-   -   possible brain stem lesion (https://www.neurotalk.org/multiple-sclerosis/169607-brain-stem-lesion.html)

brmr19 05-11-2012 11:25 AM

possible brain stem lesion
 
I have had ms for 7 years now. I never knew what symptoms I actually had as I had an mri for an ear issue. A year ago I was told I have thoracic outlet syndrome with both nerve and artery compression. I had one surgery to relieve pressure on my left side and will have my right side done this year. My neuro. thinks I also may have a brain stem lesion starting, but said it can take awhile for them to show up on mri. I went a couple years with no active lesions and last year mri showed one active. I am on avonex. Does anyone know if you can still have symptoms with lesions that show inactive on mri. The problem I have is that thoracic outlet syndrome can have same symptoms as ms. I have been more tired, more pain, and tingling down my arms and neck. The first surgery helped some pain and real bad dizziness I was having, but still have dizziness.

KittyLady 05-11-2012 11:35 AM

I'll tell you my experience. Ive had MS for 20yrs now. Last October I had a really big flare and the mri showed no new or active lesions. Had another really big flare in December this time I could barely walk, but could not walk on my own, had to have a walker or I just fell. Even with the walker I could barely move. MRI showed no lesions on the spine. My neuro told me just because the mri didnt show a lesion or active lesion, doesnt mean its not there, just means it didnt "light up" on the mri.

SallyC 05-11-2012 12:47 PM

Dear Brmr, Your Doc probably suspects a brainstem lesion, because of your dizziness?
And yes you can still have symptoms from old lesions. Some symptoms just stick around..:mad:

brmr19 05-11-2012 02:23 PM

thanks for your repies. i figured you could still have symptoms without the mri showing active. i just don't know what symptoms are from ms and what are from tos. thanks again, i will just have to take it easy and see what future days ahead brings.

Dejibo 05-12-2012 07:17 AM

There are "silent" lesions that do damage, but dont show up on the machine. Now, whether that is that the machine isnt strong enough to see them yet, or technology hasnt advanced far enough to really get a good look, who knows. I am dealing with some silent damage right now.

I hate this disease!

brmr19 05-17-2012 10:36 PM

yes it was...i have one every other year. i don't get sedated. when i am having mri, i imagine myself somewhere and really focus on a peaceful setting. my sister hates them, and i told her to try what i do, she recently had one and stated it really helped her.

doydie 05-17-2012 11:25 PM

I have had a brainstem lesion since 1997. It isn't active right now. I have been on Avonex since 97.

brmr19 05-28-2012 11:43 AM

when i look down, either when standing or sitting, I get a buzz down my back especially in lower back. I know that I have herniated discs in my lower back, but can this be from a possible lesion. I do have a bulging disc in my neck, but the doctors were not concerned about it.

Kitty 05-28-2012 02:30 PM

Quote:

Originally Posted by brmr19 (Post 883863)
when i look down, either when standing or sitting, I get a buzz down my back especially in lower back. I know that I have herniated discs in my lower back, but can this be from a possible lesion. I do have a bulging disc in my neck, but the doctors were not concerned about it.


I believe that's L'Hermittes. I get a strange sensation in my left leg whenever I look down. If I happen to be standing or walking it can almost trip me up because my leg turns to jello. :eek: I used to get the buzzing feeling in my neck and spine but it's changed to the left leg sensation only now. I do believe it's from a well-positioned lesion. :rolleyes:

SallyC 05-28-2012 04:32 PM

Yes that sounds like L'Hermittes and is very common with MS. It feels like an electrical jolt going down the back of your neck and spine.

We're here with you brmr19..:hug:

brmr19 05-28-2012 07:57 PM

thats what I thought, I have gone 7yrs with really not to much as far as symptoms and this past year as been tough. It started out april 2011 with feeling like I was going to pass out. Turned out to be thoracic outlet syndrome with arterial compression. The subclavian artery was being pinched on my left side but when it was compressed, my vertebral artery would stop flowing. I had one surgery on left side which helped some. I have another scheduled in july for further repair on left side and then will need the right side done because of the same. During this time, my neurologist believes I my have a lesion on the brain stem that just did not show on the mri. This new symptom started several months ago. I have not worked since april of 2011 and still waiting on disability through my pension system. What a year, I go from very active working over 60hrs a week to not being able to do much. I have limited use of my arms due to the thoracic outlet syndrome. I am trying to stay positive the best I can, since I have always been a very positive person. Thanks for the support.

brmr19 06-18-2012 03:42 PM

Well I had a MRI today of brain and cervical spine. I asked for a copy of images which they gave me on cd. I am no expert, but it appears there are more lesions active then my last MRI. It also appears to show an active lesion on brain stem, but I will wait to see what the report says. My last mri only showed one active lesion, the machine in the mri today show several. I know this was a stronger mri machine then the last, because it looked newer, and the tech said that they just got this one in December.

ANNagain 06-18-2012 04:02 PM

How are you feeling?
ANN

brmr19 06-19-2012 06:37 AM

I have had on and off dizziness and disoriented at times. I do not know if it is ms related or from the thoracic outlet syndrome. I have neuro. and arterial compression with the tos, so it maybe from that. I have limited use of my arms because when I use them the tos flares up.

Dejibo 06-19-2012 08:25 AM

no advice, just hugs. :hug:

brmr19 06-19-2012 11:24 AM

Well just got my mri report, which states there are multiple new chronic lesions since previous exam which was March 2011. Does not show any on spinal cord. My neurologist sent me an email wanting me to come in after a scheduled surgery coming up. She wants to change me off avonex to something different.


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