MS diagnosis vs CIS Diagnosis

[Newlyfe]

Hey guys....my neurologist diagnosed me with RRMS a few weeks ago... i have been waiting on my rebif... the doctor put on the paper work CIS... probably because I’ve only had one episode... so lifeline assistance said RRMS is a requirement for them... my doctor never told me he changed my diagnosis... currently waiting on Doctors office to return my call... is this normal????

[Kenu]

Hang in there! You are in the right place for support and information from people who care. Ken 🐾🐾

[Newlyfe in reply to Kenu]

Thank you!

[greaterexp]

If it takes a certain diagnosis to get the patient financial support, I would be sure to let the doctor know this right away so he can change the diagnosis, if possible.

I wish you the best with the process of starting your DMT (disease modifying treatment). Keep us posted.

[Jesmcd2 CommunityAmbassador]

Hi Newlyfe welcome to the family. ☺️ Although I am sorry about your dx and how confusing it can be. Is your neuro an MS neuro? Have you had the spinal tap and MRI? I'm nosy.🤣 Anyway, just wait to hear back from your neuro and have them straighten it out. It'll be ok! 🤗💕🌠

[Newlyfe in reply to Jesmcd2]

He Is a neurologist But I don’t think MS is his specialty... yes I had a spinal tap....4ocb bands he sent me to the hospital to get all the test done and additional MRI’s... So he worked with the emergency department neurologists. very confusing though... it sounds like CIS is like pre MS 🤔🤔🤔just waiting on my callback 😉thanks 🤗🤗im so anxious to get started smh

[Jesmcd2 CommunityAmbassador in reply to Newlyfe]

Find an MS neuro ASAP!! And CIS is Clinically Isolated Syndrome and I'm pretty sure it's just a one time thing. Not an RRMS thing.☺️

But you need to get to a specialist. They will be the ones to help you the best through all of this. If you need help finding one, MSAA can help you. Or ppl here can help if they live close to your city.

Hang in there, you will get started soon enough! 🤗💕🌠

[kdali]

Tell your MD they won’t cover treatment for CIS.

[Violonchelo]

I have also Rebif since 1995.

[mm1527mm]

i was originally told cis. I had no bands in my tap. The lesions in my brain really is what showed ms plus my episode. I went for many opinions and was told cis would be treated like ms. Blessings to you

[Newlyfe in reply to mm1527mm]

Thanks you! I have 3 brain lesions.... not sure who told him to change my diagnosis... now he’s delaying calling me.... his PA can’t fix this issue..thanks for the blessings! They really trying to confuse me here and I’m ready to switch doctors...

[Bwine]

I was never told CIS and I have also never had a spinal tap. I was diagnosed from an MRI and other tests - eye tests, etc. I am also on Rebif and have been since 2013. I didn’t even know what CIS was until I saw it here. Maybe you need an actual neurologist who “specializes” in MS. It wasn’t until after both my favorite doctors retired did I learn about neurologists who specialize in MS. I need a doctor who has total knowledge of my disease and can help me with it. NOT a doctor who can see me regularly and take my money but send me somewhere else when it gets over their head! You should check in to that, too.

[Newlyfe in reply to Bwine]

Yea that’s what I have I think this is over his head ...

[sashaming1]

nationalmssociety.org/What-...

"Clinically isolated syndrome (CIS) is one of the MS disease courses. CIS refers to a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system (CNS). CIS can be either monofocal or multifocal:

Monofocal episode: The person experiences a single neurologic sign or symptom — for example, an attack of optic neuritis — that is caused by a single lesion.

Multifocal episode: The person experiences more than one sign or symptom — for example, an attack of optic neuritis accompanied by numbness or tingling in the legs — caused by lesions in more than one place.

The episode usually has no associated fever or infection and is followed by a complete or partial recovery.

CIS progression to MS

Individuals who experience CIS may or may not go on to develop MS. In diagnosing CIS, the healthcare provider faces two challenges: first, to determine whether the person is experiencing a neurologic episode caused by damage in the CNS; and second, to determine the likelihood that a person experiencing this type of demyelinating event is going to go on to develop MS.

High risk of developing MS:

When CIS is accompanied by magnetic resonance imaging (MRI)-detected brain lesions that are similar to those seen in MS, the person has a 60 to 80 percent chance of a second neurologic event and diagnosis of MS within several years.

Low risk of developing MS: When CIS is not accompanied by MRI-detected brain lesions, the person has about a 20 percent chance of developing MS over the same period of time.

According to the 2017 revisions to the diagnostic criteria for MS, the diagnosis of MS can be made when CIS is accompanied by MRI findings (old lesions or scars) that confirm that an earlier episode of damage occurred in a different location in the CNS. The new criteria also allows for the presence of oligoclonal bands in a person's cerebrospinal fluid to help make the diagnosis. As MRI technology becomes more advanced, it is likely that the diagnosis of MS will be made more quickly and there will be fewer people diagnosed with CIS.

An accurate diagnosis at this time is important because people with a high risk of developing MS are encouraged to begin treatment with a disease-modifying therapy in order to delay or prevent a second neurologic episode and, therefore, the onset of MS. In addition, early treatment may minimize future disability caused by further inflammation and damage to nerve cells, which are sometimes silent (occurring without any noticeable symptoms). Several medications have a Food and Drug Administration (FDA) indication for CIS: Avonex®, Betaseron®, Extavia® and Mayzent®."

[RoyceNewton]

I agree get a second opinion. You do not want a CIS diagnosis, that will throw all your life plans in total disarry. You want a definitive RRms diagnosis, until they says it is start acting like it is. Get an MRI (Magnetic Resonance Image) of your brain. Take 5mg before you go in the tube. You might be able to hack it, maybe not. Either way welcome to the family sort of. Good luck on everything.

[bxrmom]

Welcome to this wonderful group Newlyfe Sorry for the reason. You will find a lot of healpful information here along with great friends.

[Newlyfe]

He changed it!

[Jesmcd2 CommunityAmbassador in reply to Newlyfe]

Happy to hear Newlyfe now call MSAA Toll-Free Helpline [phone] ext 154 and find a MS SPECIALIST!!! 🤗💕🌠

[TDonahue58]

stay on top of the supporting agencies you're dealing with.

Keep in touch..

[Hidden]

Afraid so