To KoKo and .....

[catmama]

To KoKo and anyone else that may want to offer same experiences.

KoKo,

I've noticed your signature and read your profile and had a few questions that I hope you can answer for me.

I see (if my math is correct ) that we were both diagnosed around the age of ~42. Were you initially diagnosed with PPMS? Have you ever been on DMDs? Can you tell me your mobility level?

The reason I ask is that I was initially dx'd as RRMS and basically waited 5 years for a remission . I tried both Rebif and Copaxone and continued to progress. Finally after many discussions with my worthless neuro (still doesn't see a connection between Vit D and MS, among other things) I fought my way to the UCSF MS Center, and finally received a dx of PPMS.

The decision to continue Copaxone was left up to me, with the statement of "possible insurance", although as we know (and my new neuro stated), studies show no effectiveness with PPMS.

I guess I'm asking for your thoughts on this. I know that it is my decision, but value your input as we seem to be in the same boat.

Another question I have is that when the study on Gilenya for PPMS is finally completed and shows effectiveness, do you think you'll try it? How about Ampyra, or 4-AP?

You've probably mentioned these things in either a thread or a post, and I've searched, but seem to lose track of where I am looking (thanks ms).

Thanks for your input,

Cat

[KoKo]

Hi catmama

I see (if my math is correct ) that we were both diagnosed around the age of ~42. Were you initially diagnosed with PPMS? Have you ever been on DMDs? Can you tell me your mobility level?

Yes I was diagnosed with PPMS from the get-go, after all of the rule-out tests, MRI's, and Spinal Tap. My symptoms had been progressing for a year (bladder issues, limp, right arm weakness, heat sensitivity, gait disturbance, neuro muscular fatigue).

Have you ever been on DMDs?

Never used DMD's. My neuro had sent me to the Mellen Center for MS, for a confirmation on the type of MS, and for treatment options. The MS specialists told me that the lesions I had were not the inflammatory type, so the DMD's would not be beneficial. Made sense to me.

My neuro wanted me to try Novantrone, but then the clinical trial results for Novantrone and PPMS were stopped early because there was no benefit seen, and some patients got worse. So I didn't try the Novantrone.

Can you tell me your mobility level?

My current mobility level is I can walk with aid. I use a roller walker most of the time. I use a cane for short distances, and can use the walls and furniture while at home.

The decision to continue Copaxone was left up to me, with the statement of "possible insurance", although as we know (and my new neuro stated), studies show no effectiveness with PPMS.

I guess I'm asking for your thoughts on this. I know that it is my decision, but value your input as we seem to be in the same boat.

I've seen a few different mind sets here on the forums. One mindset belongs to the ones who believe in trying any of the meds, at any cost or side effects, for the possibility of benefit, no matter how small. And that's fine.

Another mind set, which I have had, is one that is very cautious and leery about using drugs that haven't been proven to help. There is no right or wrong mind set, as we have to follow our own heart and gut.

Another question I have is that when the study on Gilenya for PPMS is finally completed and shows effectiveness, do you think you'll try it?

If Gilenya patients in the trial show improvement, or lack of progression, I would try it.

How about Ampyra, or 4-AP?

You know, I've been following the Ampyra threads ever since the drug became available. I haven't discussed it with my neuro yet. I guess I want to see first that everyone on it is doing great, and no problems. (I must be turning into a skeptic these days.)

Anything else, I'll be glad to share.

Take care,
KoKo

[catmama]

Thanks KoKo

Thanks for your quick response and for sharing your history with me.

I am seriously considering stopping Copaxone, I really have no idea why I am still on it, other than fear. I do wonder if I had never started it if I would be further along in my progression. Wish I had that crystal ball, you know?

Thanks again,

Cat

[KoKo]

Catmama

I do wonder if I had never started it if I would be further along in my progression. Wish I had that crystal ball, you know?

Yes, it would be great if you really knew if you were benefitting from the Copaxone, or if that is the natural course of the MS.

I can understand your indecision. Some with RRMS have tried all the DMD's and have still progressed with relapses, while some without them have had only a few flares.

PPMS progresses at different rates also.

Not an easy decision, for sure.

Take care,
KoKo