Doctor thinks I've had my first Relapse ...

[DXB]

Hello all,

I've started Gilenya on April 14 due to ON , since then I've been out living , traveling and having good times which I am thankful for .. However since last Monday I've been having a new light tingling sensation in my lower abdomen and left side of my torso and the strange thing is that touching it (my torso) would cause tingeing at my left elbow !

Doctor prescribed 3x days IV steroids and said he would not recommend shifting DMDs as I am JV+ and Lemtrada is overkill for my mild MS .. However he was open to the prospect of shifting to Ocrelizumab when it is available ...

I think what triggered it was the 10 day interruption of G due to shifting insurance policies ...

What you guys think of the course of action , should I have insisted on immediate escalation ?

Cheers !

[pennstater]

Sorry to hear. Hope you are feeling better and can quickly go back to your life.

Not a medical expert and everyone's risk tolerance is different. Is your neuro an MS specialist or general neuro?

1. MS is mild until it isn't. But studies do exist that show people whose primary early symptoms are sensory, such as tingling and numbness do have a milder course of MS. Of course, exceptions exist, but odds may be in your favor.

2. I am surprised you had IV steroids for sensory symptoms alone, or did you have other symptoms in relapse?

3. Did your neuro do another MRI to see if any new or enhancing lesions? Not all lesions show on MRI, so not an exact science. But if new lesion(s) did show, may be more support for changing DMT.

4. Did you mean you started on Gilenya In 04/2014 or April of this year? Studies also show longer you go between relapses in early stage, more predictive of a "milder " disease course.

Many neuros won't use the word "mild" in connection with MS any more. It offends some patients. However for some people, "mild" lends optimism to their diagnosis.

[DXB]

Thanks , I am doing well as its just a minor sensory episode .. but as the it's the first relapse it had a bit of psychological blow (I've been quite nonchalant about my whole MS thing recently)

Yea my doctor (Specialist neurologist) also thinks things are in my favour. Regarding the steroids I was too surprised but my doctor is saying its to block after further progression of the relapse and it started only 3-4 days before I saw him they do seem to have reduce the new tingling GREATLY

Doctor did not propose an MRI but based on my description he believes its a minor episode. He would have shifted me on Tysabri if I had been JV- , so its G for now as Lemtrada is overkill according to him.

I am open to reasonable risk , back at diagnosis I rejected interferons due to their marginal effectiveness and would have been insistent today on Lemtrada if Ocrelizumab was not around the corner with similar efficiency and much better safety profile (hope this holds).

Yup I started in 14' and my first episode happened in November 2013 , its been dormant till "this minor episode"

I would want to believe its mild , and naturally , I cling to my relative normalcy..

Thanks again

[pennstater]

Understand the psychological blow. When things are good, it's easy to ignore it and push to the back of the mind. If it weren't for the medicine and neuro appointments, could almost deny it!

Glad to hear feeling better. After reading your answers, seems reasonable your neuro would wait and see. Hoping you can continue on with life without many MS interruptions.