Just Wondering...

[Chippy01]

Hey everyone,
I was hoping to get some advice and recommendations from some of you as I just feel so lost. I’m not sure if I should start medications or not.
My story just seems to be one big grey zone. My neurologist is even unsure on how to proceed. Anyway, here it is...

Back in June, I presented with optic neuritis causing vision problems in one eye. I was hospitalized and put on steroids. I had a whole brain MRI while I was there and it came back without any lesions, just showed the optic neuritis. I had a lumbar puncture done then too and it came back with oligoclonal banding. I also had a bunch of bloodwork done that tested positive for autoimmune disease but ruled out basically everything but ms. I then had a whole spine MRI which also did not show any lesions. When I met with my neurologist, they advised me to go on medication because they told me I was high risk for developing ms but couldn’t diagnose me without the presence of lesions or another neurological event. The neurologist basically said that they would take the medication because they didn’t want to live with regret if something did happen at another point in time and caused permanent damage. Now when I met with my neurologist, they never diagnosed me as having ms but then when I read their consult note, they classified me as “clinically isolated”.

Would you go on the medication? Do people think I will develop ms? Has anyone else presented like me? Any other advice on what I should do?

Thank you for taking the time to read my story. I would really appreciate any advice.

[Boudreaux]

My .02

I would not start any DMD. Your next two questions I do not know how to answer. As far as what to do, take it easy. Research and learn what you can and make informed decisions. Take care.

[Marco]

Hello and welcome to MS World. I am sorry that you are experiencing health issues and prolonged questions.

Has anyone else presented like me?
Optic neuritis is one of the most common presenting symptoms. Face it, when someone's eyesight gets wonky it gets their attention and they seek medical help.

https://www.nationalmssociety.org/Fo...lated-Syndrome

Would you go on the medication?
The National Multiple Sclerosis Society recommends early treatment for CIS in attempt to delay, or prevent, the occurrence of Multiple Sclerosis. Your caveat is that you do not have any visible lesions on MRI, but approximately 5% of the MS population get diagnosed without visible lesions. Here's a link to their recommendation:
https://www.nationalmssociety.org/Wh...IS)/Treatments

Do people think I will develop ms?
There truly is no way to know. Even without medication some people will never develop clinically definite MS. Likewise, some people on medications will quickly convert to MS. It's impossible to know, but there is some science that suggests treating with medication may delay the onset of MS.
https://www.ncbi.nlm.nih.gov/pubmed/22265211

Any other advice on what I should do?
Try not to freak out and avoid reading every horror story online. With or without MS, you should strive to live a healthy life. That means being mindful of your diet, getting exercise, enjoying life and reducing stress in your life (obviously there are more things too). Consider starting a health journal to track any possible symptoms to share with your neurologist. You should also keep a list of questions that you want to ask your neurologist on your next visit. You might also consider getting a second opinion from a second neurologist, preferably a MS Specialist.

Time Travel
If I could go back in time I would have fought to go on Copaxone the second they suspected MS. Copaxone is considered safe and normally well-tolerated. With my insurance (and Teva's Co-Pay assistance) it would be "free" for me. Of course, that was years ago and there are more potent medications available today. In your current situation I would probably still opt for Copaxone, but I am a believer in the MS medications.

Please feel free to ask any additional questions and I wish you well ...

[Leenyi]

Hi Chippy.

I'm sorry you're in this position.

I was diagnosed with optic neuritis in 1984. Before there were any MS drugs. I had no other symptoms and they did not do an MRI. They didn't even mention ms probably because there weren't any drugs available.

6 years later I had a relapse that included numbness, tingling, walking and bladder issues. They did an MRI and it showed several lesions and I was diagnosed with MS.

I have been on copaxone for years now and haven't had any more relapses. I think that if I had started on copaxone sooner I would be in much better shape.

Ei

[SNOOPY]

Hi Chippy01 and welcome to MSWorld

Clinically Isolated Syndrome(CIS) may or may not develop into MS, with or without medication. For this reason some Neurologist's do not prescribe MS treatments, some do.

I have MS but, to date, I have not had Optic Neuritis (ON) and I have been diagnosed with MS for 34 years. On the other hand my sister, who does not have MS, has had Optic Neuritis and after many years has not developed MS (MS treatments were never offered to her).

I had a lumbar puncture done then too and it came back with oligoclonal banding.

Do you know how many o-bands and if there were any in the serum?

I also had a bunch of bloodwork done that tested positive for autoimmune disease but ruled out basically everything but ms.

Any blood work you have done it to rule in/out other conditions. There is no blood work that can rule in/out MS. To date, there is not a blood test for MS.

[Chippy01]

Thank you everyone for the kind words and quick advice! It really does help to know we are not alone.

And to reply to Snoopys question about how many oligoclonal bands were present, all the report said was “Several bands of varying concentration seen in CSFbut not serum) following IEF-IgG immunofixation.Intrathecal
IgG-synthesis. Typical oligoclonal bandingpattern,frequentlyseen in multiple sclerosis.


Also, do people think if I do go on copaxone, that it may actually hide a diagnosis of ms in the future?

Again, thank you so much for getting back to me!

[Marco]

Also, do people think if I do go on copaxone, that it may actually hide a diagnosis of ms in the future?

You should read the entire article linked below, but this may answer your question.

New 5-year data from the PRECISE trial show early treatment with glatiramer acetate delays progression from clinically isolated syndrome (CIS) to clinically definite multiple sclerosis (MS).

https://www.medscape.com/viewarticle/731271

[Marco]

Effects of early glatiramer acetate treatment on the rate of conversion to CDMS and on MRI measures of disease activity and lesion burden support initiating glatiramer acetate treatment soon after the first clinical symptoms suggestive of MS and continuing treatment to sustain benefits.

https://www.ncbi.nlm.nih.gov/pubmed/23234810

[SNOOPY]

Hi Chippy01.

Also, do people think if I do go on copaxone, that it may actually hide a diagnosis of ms in the future?

Unfortunately, no one, even your Neurologist, will be able to answer your questions with any certainty. In a post by Marco ~

Marco:
There truly is no way to know. Even without medication some people will never develop clinically definite MS. Likewise, some people on medications will quickly convert to MS.

With or without the Disease Modifying treatments MS is a crapshoot ~ there are no guarantees and no cure for this disease. If you have MS at some point it's very possible for lesions to appear within the Central Nervous System(CNS) even if you use Copaxone.

I would encourage you to get a second opinion before making a decision. The treatments for this disease comes with some serious side effects and using caution, such as a second opinion, might help you decide what is best. The other issue is there is no single test or symptom(s) that can definitely give a diagnosis of MS. This disease has a very long history of a misdiagnosis happening.

You may want to read this article:
read:https://www.sciencedaily.com/release...0831163038.htm