Understanding MS diagnosis

[FindingAnswersMaccy]

Hiya

I am stuck up with a strange situation, After experiencing numbness for about 2 weeks i decided to meet a neuro & I got my brain MRI, Lumber puncher & Evoked potential in June and here are the results

My brain MRI showed 2 lesions which read -

Non enhancing T2W1/Flair hyperintense & T1W1 hypointense lesions were noted in the right temporal lobe white matter & right middle cerebellar penduncle without diffusion restriction/blooming on SWI

Spine MRI was normal

3 oligoclonal bands were found in CSF & absent in serum

oligoclonal bands present in CSF suggestive of intrathecal IgG synthesis

Evoked potential was normal

My neurologist says let's wait for the next scan to be sure if this is MS & my next scan should happen somewhere next year or may be 8 months from now & that is a long wait

Can you from your experience help me understand lesions in brain & oligoclonal bands presence in CSF not good enough to be diagnosed as MS

[CynthiaS]

I personally would set appt with neurologist to explain 🤔 and interpret in lame terms. Or get second opinion. Try to do some research on multiple sclerosis. Blessings Cynthia

[Jesmcd2 CommunityAmbassador]

Hi and welcome FindingAnswersMaccy ☺️ was the neuro an MS neuro? Have your symptoms gone away? MS is a funny thing because it can mimic many things, and your Dr might be ruling this out.? 🤗💕🌠

[FindingAnswersMaccy in reply to Jesmcd2]

Hiya

Been about 3 months & my symptoms reduced by about 75%. Does it usually take this long ? Apparently my Neuro is a MS specialist. I thought presence of oligoclonal bands & brain lesions were good enough to be diagnosed. I hate the wait time

[Jesmcd2 CommunityAmbassador in reply to FindingAnswersMaccy]

Everyone hates the wait time! So we understand. 🤗

No one here is a Dr or can give you any kind of DX. That is in the hands of your neuro.

That being said, he could be thinking it's a single incident? CIS, Clinically Isolated Incident? But I don't know? You can read this for more info on MS maybe answer some of your questions. mymsaa.org/ms-information/n...

🤗💕🌠

[FindingAnswersMaccy in reply to Jesmcd2]

let me check that out

[bxrmom]

Did your spinal tap show anything? My brain MRI lead to more testing, and the spinal tap is what got my final MS diagnosis.

[FindingAnswersMaccy in reply to bxrmom]

My spine didn't show any lesions.

It was 2 brain lesions and some 3 oligoclonal bands

[bxrmom in reply to FindingAnswersMaccy]

Did you have a spinal tap where they take cerebrospinal fluid (CSF) from your spine for testing?

[FindingAnswersMaccy in reply to bxrmom]

Oh yeah and it showed 3 oligoclonal bands

is that good enough ?

[bxrmom in reply to FindingAnswersMaccy]

I'm not a doctor, but it sounds like it should mean a difference in diagnosis of something. Hopefully the other tests your Neuro is going to run will figure out what is going on. Keep us updated.

[Frances_B in reply to bxrmom]

bxrmom - FindingAnswers wrote at the very beginning of this thread that they had a lumbar puncture done (even if if was spelt "lumber puncher" ) and that is the same thing as a "spinal tap" - and they also wrote that the CSF drawn from that lumbar puncture had oligoclonal bands in it, so your question was actually answered before you even typed it up and posted it............

[greaterexp]

Perhaps your doctor wants to be sure it's MS before beginning any treatment. It's understandable being frustrated with the wait. I had to wait 4 months after my diagnosis before starting a DMT, but even though I think it's important to start a DMT as soon as possible, we have to remember that MS is generally a slow moving disease, and we sure don't want to be treated for something we don't have. That said, have you considered getting another opinion, particularly at an MS center?

Please keep us posted.

[FindingAnswersMaccy in reply to greaterexp]

oh yeah !!!

I will or may be I should wait for 6 more months to get another brain MRI and see if the lesions increase. I have an appointment with my Neuro 2 months from now. He probably will have a better answer than.

[Hidden in reply to greaterexp]

Could be something else....

Keep searching

You know your body best

[goatgal]

I know you are impatient to have a clear answer, but it often takes years to have a definitive diagnosis. Worrying is bad for your health and will not hurry the process, but in the meantime, you can be proactive. Keep a log of what happens: dizzy, numb, falls, eye pain, etc....write it down with a date and duration to show to the neuro at your next appointment. Stay calm and carry on, as the trope goes.

[MoparMom]

I thought that it has to be shown that lesions have occurred at different times/intervals or different locations otherwise it's CIS.

I had 10 lesions on Jan 2020 brain MRI, spinal tap in February showed 18 bands but it wasn't until I had a 2nd MRI in March with spinal MRI & it showed a new lesion in the brain in just 6 weeks plus lesions on cervical spine. At that point, the definite diagnosis was made.

[hairbrain4]

When I was diagnosed my neuro at the time was an MS specialist. He said they like to have at least 3 tests that show possible MS. From what you posted only 2 of the 4 you had only showed possible MS. That is probably why your doctor is waiting to diagnose since there are several other diseases that have some of the same symptoms as MS.

[FindingAnswersMaccy in reply to hairbrain4]

when you say 4 tests do you mean

Brain MRI

Spine MRI

Evoked potential test

& is it Presence of Oligoclonal band

have I missed anything else ?

[hairbrain4 in reply to FindingAnswersMaccy]

You said you had a Lumbar puncture which is another test that showed 3 Oligoclonal bands. That test can indicate MS or CIS (The big difference is that CIS is a single episode while MS involves multiple episodes, or flare-ups. With CIS, you don't know if it'll ever happen again. Conversely, MS is a lifelong disease without a cure, though it can be managed.) There are so many different variations of diseases of the brain that mimic MS & your doc is probably just trying to determine which you have & and that takes time especially since you only showed variations on 2 of the tests your neuro gave you, your Brain MRI and the Lumbar puncture. The Spine MRI and the Evoked Potential Test were normal. So please be patient and pray that it is a one time event (CIS) rather than MS.

[FindingAnswersMaccy]

oh !!!

I was under the impression that presence of more than one Oligoclonal band & 2 brain lesions were good enough for diagnosis

but I think I understand what you are saying

I hope for the best