Understanding Symptoms of CIS/MS - Please Help

[FindingAnswersMaccy]

Do you still get flares in Clinically isolated syndrome ?

I had right facial & tongue numbness 3 months back, The tests showed 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

1-3 oligoclonal bands were found in CSF & absent in serum

oligoclonal bands present in CSF suggestive of intrathecal IgG synthesis

Evoked potential was normal

My Neuro says let's wait & watch.

Met another Neuro last month, got another Brain MRI & that too showed the above results & lesions were not enhancing & he too said he doesn't think its MS & advised me to wait

My facial & tongue numbness had reduced by around 80% but now from last 1 week I see the numbness has partially increased by around 15%

My questions is

1. Is this a flare

2. In Clinically isolated syndrome do flares repeat partially ?

Running to neuro every time is difficult as I live remotely so I needed your help in understand the above two questions.

[jimeka]

I cannot answer your questions as I don’t understand CIS but I am sure you will get lots of help. greaterexp or kdali or erash may know?

[FindingAnswersMaccy in reply to jimeka]

Thank you jimeka

Since I am new to this I don't have required information and reaching out to this forum is the only option

hoping someone will answer

[kdali in reply to jimeka]

Hey! A CIS is a one time thing. Brain damage from any injury can wax and wane in what the person experiences from day to day, but usually becomes more predicable around 6 months after the damage occurs. I know this isn’t helpful because you can’t determine what is what without professional help, but at least it’s a normal thing to have to make several calls after a CIS (or relapse, or for questioning progression for those types).

I would pick a neuro and then ask what specifically the call rules are for coming in to have another exam or for going to the nearest emergency room to get checked out.

[rjoneslaw]

I dont know anything about CIS except what I read but I hope someone responds to you.

Also you may want to search around the site to see what others have posted about. I do recall some post on it awhile back

[FindingAnswersMaccy in reply to rjoneslaw]

Will do

[ahrogers]

multiplesclerosisnewstoday....

I found this info that helps distinguish between CIS and MS.

I would think you can have symptom flares in CIS too since there is CNS damage. Stressors on the body can cause flares, like an infection.

I thought I read there was thought to start DMT for CIS so did a quick search and found this

nationalmssociety.org/What-...

It may be worth finding a MS specialist at the closest big hospital system to you for a third opinion if neither of the 2 you have seen are at an MS center.

Good luck to you!

[FindingAnswersMaccy]

Thank you for being so kind. This community has such wonderful people

It really helps a lot

[JMWCO]

I had facial/shoulder (turned into arm) numbness as it was ½ my face. They kept working through meds and tests but it got better albeit slowly.

What truly gave the MS away was the chin area as it is not apart of the same facial nerve.

Hope this helps as lesions can be MA and other similar diseases.

[greaterexp]

I had CIS about 25 years ago. My MRI didn't show any significant damage then, though that was before MRI's became more sophisticated. My cerebrospinal fluid apparently was negative for oligoclonal bands and was again when I had my first relapse. My neurologist at the time of the CIS just shrugged his shoulders. He suspected MS, but without more proof than clinical signs, he did not feel comfortable diagnosing me. There were few treatments then, and though I wonder if I would be doing even better now if had been treated, I think, given the knowledge we had then, that the doctor probably made a good choice. Things have changed in treatments, and I'm so glad that ahrogers offered those great links for more information.

I hope you can get clear answers soon, but most of all I hope you continue to improve rapidly. Please keep us posted about how you're feeling and what your neurologists have to say. And welcome to a great group.