I'm confused

[peaceandlove2]

Hi. I've just seen a specialist in The Walton Centre Liverpool. Tested for nmo but looking more like ms.  I've had Transverse Myelitis and now have optic neuritis.  Been advised to go on medication but I just don't want to.  Just wondering what other thoughts are.
Thanks in advance. x

[kwarendorf]

Hi P&L

I would want a more affirmative diagnosis that "starting to look like MS." before starting a DMD. What kind of specialist did you see?

Kyle

[supermum_ms]

Hi and welcome to our little MS community,

I'm a little confused by your post (sorry), i'm not sure if you're saying....

(a) Your original diagnosis of Transverse Myelitis was inaccurate because now you've also been diagnosed with ON, so there something else causing it all but it's still unclear if the condition you have is NMO or RRMS. With your question being about NMO vs MS.....

OR

(b) You were thought to have NMO because of the prior diagnosis of TM and ON but have actually been diagnosed with RRMS instead and now advised to start one of the MS medications ie disease modifying drug (DMD's).  With your question being about MS disease modifying drug's and whether it's fine to choose not too.....

note: I've assumed the medication that you don't want to take, is one of the MS disease modifying drugs (DMD's) and not steroids (usually Intravenous) which is typically prescribed to treat Transverse Myelitis, Optic Neuritis and MS, with low dose steroids recommended over a longer period prescribed for NMO.

In regards to (a) NMO vs MS: To be honest i'm not surprised your confused, it's totally understandable to have doubts, more so when the diagnosis is unexpected or potentially something else yet similar. With out having any of the diagnostic evidence mentioned, that put MS higher on the list than NMO, it's very difficult for me to write all the different yet possible explanations, that i can come up with for why it could be looking more like MS.......

"In the past, NMO was considered to be a severe variant of multiple sclerosis (MS) because both can cause attacks of optic neuritis and myelitis. Recent discoveries, however, suggest it is a separate disease. NMO is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognized as relatively specific symptoms of NMO that are due to brainstem involvement.

The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions."

http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

I genuinely know very very little about NMO, we've had questions about the difference between TM and MS though and off the top of my head, one of the distinguishing differences between MS spinal cord lesions and TM spinal cord lesions, is typically the size of TM cord lesions are a lot bigger. Another difference is TM lesions often cut across the cord and more commonly cause bilateral symptoms below the lesion location but MS cord lesions [probably because of the smaller size and not cutting off the cord (?)] more commonly cause unilateral symptoms.

If i where in your situation i would be going through all the test evidence, seeking why the evidence is looking like MS and seriously consider getting a second opinion to reaffirm that RRMS is unquestionably correct and help understand and choose which DMD I should start!  

Hugs..........JJ