Newly Diagnosed, Meeting with Doc Today

[mpeace1406]

Hi everyone! My name is Melissa, 30 years old, living in Connecticut, and diagnosed with R/R MS in Sept. 2015 after a bout of optic neuritis while I was on vacation (maybe the heat spurned it on?). Referred for MRIs, lesions present on the brain, cervical and thoracic spines. I am meeting with the neurologist today to discuss medication after having to get my blood work done and the spine MRIs.

The only other symptoms I've experienced is a painless but odd "electric shock" feeling when I lower my neck at times, and intermittent numbness in my left three fingers that I've had for about 9 months now. Honestly, if it wasn't for the optic neuritis I probably wouldn't have gone to a doctor, so it was 100% a blessing in disguise.

I'm torn about what medications to begin. Of course I will discuss this in depth with my doctor today, but from my research, it seems that the oral meds' side effects may be a deterrent. Personally, I would like to do whatever is going to be most effective in the long run, but a compromised immune system is no fun either!

Anyway, I wanted to introduce myself and I hope that this message finds everyone well!
~ Melissa

[mpeace1406]

Looks like Gilenya is the verdict because apparently my MS is very "Active". Waiting for insurance to approve it now.

[msgijo]

Hi Melissa.
Welcome to MSWorld, but sorry that you have to be here.

I too presented with optic neuritis. I recovered most of my sight even without treatment for it .

You are correct about side effects being a bad thing with the DMTs, but it is like that with ALL of the DMT's - not just orals. Kinda gives new meaning to the phrase 'pick your poison'. And I agree that a compromised immune system isn't a great thing (unless you are talking to an MS expert ). I find that I have become somewhat 'germ-phobic' - compulsive hand washing, avoiding places where I KNOW germs abound (hospitals, children's gatherings etc.)

But IMHO Gilenya is the best of the orals. That may be because it is what I am taking? This is not to say that the side effects are not real and something that needs to be watched for, but just that they are mostly manageable.

Best of luck to you.

[SNOOPY]

Hello mpeace and welcome to MSWorld.

The only other symptoms I've experienced is a painless but odd "electric shock" feeling when I lower my neck at times

This is called Lhermittes sign. When related to MS Lhermittes is caused by lesions on the cervical spine. Lhermittes causes abnormal sensations (electrical shock, vibrations/buzzing) each time you bend your head down. These sensations will last only seconds but can be repeated each time you bend your head.

Good luck with Gilenya, hope it works well for you

[mpeace1406]

Thanks so much for the replies! I am definitely anxious to begin my meds, but grateful that there are so many advancements already and on the horizon

[palmtree]

If you have lesions in the cerebral, cervical and thoracic spine, I would recommend treating your MS aggressively from the beginning.

The only DMT that has no side effects is Tysabri. The DMT that is the most effective is Tysabri.

You decide.

[jreagan70]

The only DMT that has no side effects is Tysabri.

The people (both living and dead) who developed PML from Tysabri will disagree with that. People who have developed a whole host of other side effects from Tysabri will disagree with that.

Tysabri can have many side effects, up to and including death.

[bosman]

Hi everyone! My name is Melissa, 30 years old, living in Connecticut,

Hi Melissa, first of all- good luck with your treatment.
May I ask what part of CT or what dr. , what neuro. group do you see?

[Temagami]

Been on Gilenya since June 2012 and am happy with it. Do ask for blood work to keep track of your WBCs- lymphocytes in particular. Do write down the approval date as you may need reauthorization in a year and that requires timely paperwork.

[Teekybird]

I'm really tired and not feeling too cognitively sharp as I am writing this. (I've been overly fatigued lately).

I am on Tysabri.
There are side effects with Tysabri. I have not had any.

Development of PML 'could' be related to taking tysabri. Development of PML correlates with a level of a virus called JC virus that is measured by bloodwork (usually) every 3 months if you are on tysabri.

There have been instances of PML with tecfidera and also gilenya. But, there are more documented instances of PML with tysabri than the oral meds.

That said, PML is very RARE. And risk is monitored with bloodwork if you are on tysabri. Much more info is out there than my very abridged explanation here.

Any and all of the DMTs at this moment in time can have side effects.