MRI results finally came through, but nothing showing on brain MRI, that's great, but so many unanswered questions still with so many symptoms. There is this, but I don't know what it's consistent with, when I try looking up info it says demylenation, but it's only 1, so I don't think that points to MS, since it's only 1 lesion.
Any insights?
This is from my Thoracic MRI:
PARAVERTEBRAL SPACE: Nonenhancing, hyperintense T2 lesion along the right prevertebral soft tissues at T3-T4 measuring approximately 0.7 x 1.1 x 1.7 cm. IMPRESSION: 1. No abnormal cord signal or abnormal cord enhancement. 2. No significant spinal canal stenosis. 3. Right prevertebral, nonenhancing hyperintense T2 lesion at T3-T4, likely duplication cyst.
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I’m not a doctor but reading the info you provided it sounds like the radiologist didn’t classify the lesion as evidence of MS demyelination. They opined that it was likely a duplication cyst.
Many conditions have symptoms that overlap with MS and that’s one of the reasons it’s hard to diagnose. The McDonald’s Criteria is the gold standard that doctors are supposed to use to diagnose it. One lesion is not sufficient for a diagnosis per the criteria and there is nothing in the info you provided indicating demyelination.
I hope you are able to get a diagnosis soon of whatever it is so you can get proper treatment.
I feel for you. Pain without knowing the why is more difficult to cope with than pain and knowing the why. The unknown is worrisome, along with the pain. Prayers for you.
Here’s my untrained explanation: There’s a moderately sized thing in the soft tissue outside of the spinal cord. The thing doesn’t change when we add dye. It’s probably a cyst. The cord is normal. The bones look good.
That was the last part that says Impression, it kind of all squished together. Problem is I have an artificial disc, so can't even see my cervical area.
Without any lesions typical of MS in either your brain or your thoracic cord, you need to face the fact that you do not have MS, and that it is time for you to seek the answers to your symptoms somewhere else.
The cystic lesion referred to is in the soft tissue outside the spine. It has nothing to do with the spinal cord and nothing to do with MS. It is very unlikely that the lesion is causing you any symptoms.
Yes, I will of course, just so frustrating never finding answers. Mostly because in the meantime, my long-term disability is going to be denied & that makes it pretty hard to survive in general, let alone keep pushing forward.
a few years into this (never ending) long journey through limboland, i finally got my first spinal mri. it showed one thoracic lesion. the neuro diagnosed me tentatively with transverse myelitis. treatment with steroids and symptom management followed. i know one thing; i felt vindicated finally b/c i knew something was wrong and it turned out the docs just weren't looking in the right place.
years later, i now have odd findings on my brain mri, something odd going on in three levels of my cervical spine, spinal stenosis and disintegrating discs in my lumbar spine and my thoracic spine is still messed up with a lesion that appears....
or it doesn't....it's longer, or it's the same...
depending on what shows up on the mri that day. dunno if you read this, but someone posted about spinal mri's a few days back.
unfortunately for people like me whose primary issues are spinal, the mri's aren't entirely reliable. i like looking at mri images because i'm weird and they look like odd monsters😜, but no way would i try to read it myself. i know you're anxious, but i'd wait to see what the dr. says. as cold and arrogant as they so often are, they're the ones with training.
I hear you, problem is so many of these doctors are dismissive & don't even look at the MRIs. I just don't get it sometimes though, so many issues, but no reasons, like it's all in my head, which causes a lot of issues in life in general.
i had a dr look at my horrible mri (lesion showed up longer that day) and tell me my problems were psychological. so i saw a shrink, she called him and told him my symptoms weren't psychosomatic and i fired him. then when i saw the next neuro, i said, 'if you want to call this shrink, here's her number.'
it gets old so very quickly. if it turns out your issues aren't neurological, you'll have had a lucky escape. neuros are the literal worst.
OMG! YES! I have had so many doctors treat me like i was nuts and they patronize you and I even had one hand me a sample bottle of Cymbalta and pat me on my head and tell me it was all gonna be ok.. I looked at him and was like WTH are you saying man? I am depressed, yes. I am on an anti-depressant that works well right now. Not taking another one. BUT, there is something wrong with me! I am in pain 24/7 and I dont know why! He just looked at me like I had lost my mind.. I never went back.. There have been so many like that over the years.. it does get old, it's frustrating. I was approved for disablility without a Dx because of my i think. I was in my 50's when I applied. I was not Dx with MS until 3 years after I was approved. Don't get ahead of yourself and you never whose desk your claim is gonna land on. You might get approved and then you can continue to look for answers. IF not you can and should appeal and keep trying..
he patted you on the head!?!🤬nope, i would've lost it. at least you knew enough not to go back. that neuro who said it was in my head had been behaving oddly for a while, but rather than follow my instincts, i kept going. i've learned to listen to myself.
right as covid struck, i found a new neuro who got me excited. he sent my records to mayo (something i practically begged the 'it's in your head' neuro to do) and he told me to get a test done... which i can't b/c no hospital near me is doing mri's with anaesthesia. i could pull my hair out! every few months, i call around again and now i'm just waiting. as soon as i get the mri, he has other bloodwork mayo told him to do. it's super frustrating. finding one who'll listen and actually think is so much of the battle.
Oh Yes.. This was the same doctor who also told me it was all in my head.. Yeah.. turns out he was right.. all 150 + lesions were all in my head.. asshole.. he could not see anything on a normal xray so figured there was nothing wrong with me. Looking at my other medical records, he assumed i was looking to score drugs or something, which is not what i was asking for.. but yes.. he patted me on the head and tried to put me on cymbalta.. and then told me it was all in my head and it would be ok once i started taking this medication. I dont know if he looked at my med list but if he did he would have seen i was on an anti depressant and to add cymbalta to the mix would likely have thrown my into serotonin shock
I was so happy to know that I was not imagining things I really did have something wrong. Course they couldn't understand why I was happy when they thought I should be devastated. I know they will understand when we all get to heaven.
My active MS lesions are T2-5. I've been doing fine with medications. I can't resume all of my prior activities, but still stay active. BTW, I have white spots in my brain that Nuero says are not MS. No changes in size or shape since first MRI's over 5 yrs ago. Best to you, keep us informed, please.
I had the spinal tap because I had vision problems (double vision) my optometrist referred me to have it done. Then I was referred to have an MRI. I had lesions shown. This was 21 yrs ago.
wait, duplication cyst? those are almost always found in the gastrointestinal system.. what does this have to do with the thoracic spinal cord? this makes no sense.. What has your Doc said about all of this?
OK, I did find this article that talks about these cysts being referred to as duplication cysts but they are actually Spinal neurenteric cysts and they can cause significant issues because they can block the flow of spinal fluid.. radiopaedia.org/articles/sp... Hopefully your doc can shed some light on this
Nothing as of yet & I'm not even supposed to see him again, he decided I should go see a different person, a NP, but there is a lot wrong with the reports, so I'm not sure if they are very trustworthy. In this report it talks about artifacts making it difficult to see C1-C2, but that's not even near the thoracic spine, I do have an artificial disc that blocks most of my cervical spine from being viewed, at C5-C6.
It says prevertebral though, so doesn't that mean outside of that area? I don't know, I will be trying to find a doctor that will actually listen & maybe even look at the MRIs directly instead of just reports.
yeah.. that would be my thoughts for sure. I had been to so many doctors over the course of nearly 30 years before i finally got someone to listen to me and do the appropriate testing and look at the correct areas and rule out all the other stuff.. like Lyme, and other stuff.. I also have Hashimoto's and have family history of diabetes but not diabetic myself. When my new PCP read the CT scan that had been done 2 years prior to me getting Medicare and heard that I had NOT been referred to MRI and Neurology she was MORTIFIED.. over 100 lesions and no MRI.. she immediately sent me for MRI AND Neurology without even waiting for the scan to be done.. She saw what it was gonna look like. Because I live in FL Medicaid wont pay for MRI's unless a doctor fights tooth and nail to get over rides and then usually its a bare minimal MRI.. the doctor i had under medicaid wouldnt do anything. He sent me to a therapist to deal with my anxiety and told me to stop smoking.. I had done that stopping smoking already and i didnt need to see a therapist.. I needed to see a neurologist.. He would not even try to get the over ride tho even WITH a CT scan that showed all those lesions.. I had to wait 2 more years to get in to see a real doctor after i became eligible for Medicare... I hope you can get answers sooner rather than later.. I was on SSI and then Disability but Medicare doesnt kick in for 2 years after you start receiving disability
Have you ever heard of Dr Terry Whals I have been on her diet since 2012.. No ms treatment for this boy. At 35 years and counting…I NEED A CURE FOR MS. IF YOU KNOW WHERE I AN COMING FROM..
yes i have have heard of that diet altho i am not good at sticking to a diet of any kind.. I tend to cave when a craving hits me like .. oh IDK.. Dark Chocolate Milano Cookies.. LOL.. Seriously.. those damn things get me every single time
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# of lesions: a scary number 
No lesions on brain scan
No new lesions or activity on MRI!
