New here with questions

[HokeyP]

I'm so glad to have found this forum!  I was diagnosed with MS in 1989, I was in a wheel chair and had lost use of arms/legs and speech...but for the grace of god I did get out of the wheel chair and function fine MOST of the time...alot of times not but we all know how that goes.

I have very fluctuating vision in my left eye for the past 20 years and EXTREME fatigue.  I had to leave work due to these two things and my neuro did not want me to keep getting the steroid IV treatments...I don't even remember now how many I had but I can say it was more than 5 which each time was a 10 day hospital stay for the IV treatment then 10 more days of injections then had to go back to work gradually to build myself back up.  Work had been putting me into jobs I could no longer perform, in essence they were trying to get rid of me, thank goodness I was good friends with one of the big shots who knew my doctor had suggested disability and he told me to go while the going was good cause within a month I'd be out of a job....

ANYWAY (sorry got a bit side tracked there, but feels good to air to people that I know will understand)

My original neuro passed away and I have been going to his associate.  I have been getting pretty bad as of late and it's time to start some kind of treatment again.  The first thing he came up with was Novantrone, and after reading up on it I declined that due to a long history in the family of heart problems (mother, father, brother & sister died of congestive heart failure).  He was not pleased with my decision and got very snarky so I have made an appointment with a new neuro.

I've done some reading up on what is out there but could use some input on the "newer" stuff.

Thanks a ton for listening.

[HokeyP]

Hi Lisa,

Back when I took the  betaseron there was nothing else out there.  I was in the experimental group for it, the first one that went around, that was many many years ago so once that did not work for a while there was nothing else out there.  

Once I was on disability between my original neuro and myself it was by my choice to not start on anything else for a while since they started coming out as my experience with betaseron was not a good one at all and I was scared and seeing as I was pretty much holding steady with ups and downs but controlled by resting and the such.

I was diagnosed in the late 1980's, it was alot different back then, there just wasn't the knowledge as there is now.  

I'm glad things have changed but I was not about to let my new neuro tell me that the best option for me was  Novantrone and was really pushing that on me and I was not going to go for that, my body, my choice...and just way to many heart problems in my family....

I have an appointment with a new neuro but that dosent happen till the end of May, my regular doc has been helping me out with a dose of prednisone here and there till I can get in.

I am so glad to hear that Tysabri is working well for you...I hope it continues that way for you.  

I'm looking into all my options, the pros and cons before my appointment with the new neuro.

Here is to hoping your day is a good one.
Hugs to you Lisa

Pam

[Guitar_grrrl]

Hi, Pam!  Welcome.  I'm surprised your neuro hasn't suggested Tysabri or Gilenya, or even Copaxone, since you didn't tolerate the Interferon well.  I'm on Tysabri, I tolerate it super well, and I haven't had any flairs since I've been on it 1 1/2 years.  My disability is increasing, but at a snail's pace, and I'll take slow over fast any day!

Warm Hugs,
Lisa

[HokeyP]

Thank you everyone for the warm welcome.  

It's nice to find a place that people really do understand what I mean.

I was very lucky that when I was diagnosed I had a very very good doctor.  Unfortunately he passed away from stomach cancer.  He always took the time to listen to me and let me be involved with decisions.  

He had the opinion that it was my body and I knew what I was comfortable with and what it needed.

Looking forward to getting to know you all better.

Have a great day everyone
Pam

[SarahL2491]

let's keep her!  She isn't afraid of saying NO to a neuro!
we like proactive people
Welcome to our forum and will tell you there are some wonderful people here with really interesting stories!
Keep us posted!
Sarah

[jujuminx]

Welcome Pam!

I love your proactive approach.  Not afraid to disagree with your neuro, lol, love it!

Lots of variety here in this forum. Something for everybody. I am looking forward to knowing your better and reading about your experiences.

Julie

[maxthecat43]

Hi Pam,

Welcome!  I look forward to reading more of your story.

Tammy

[HokeyP]

oops...forgot to add that no...the only medication I've been that is specifically for MS was the betaseron and that did not go well.

[HokeyP]

Thank you for the welcome LuLu and good luck on the new drug you will be going on, I hope it works well for you.

I'm more the RRMS but seem to be going into SPMS. And got to say my goodness, we never had these abbreviations when I was diagnosed, I actually had to go look them up...I was pretty sure what they meant but wanted to make sure, heck I was one of the first people to get an MRI in Illinois, yeah it was that far back!!

I plan on sticking around, I've been looking for something like this for a while and actually found this when I was looking for some allergy answers...so yeah, ya'll are stuck with me for a while!  And I'm always glad to try to help someone if I can.

Pam

[Lulu54]

Hi and welcome.  We're glad you found us too!  I have a few quesitons for you -are you diagnosed with RRMS ?  OR are you considered SPMS?

Have you been on any drugs for your MS before?  There are the interferons (rebif, betaseron, avonex), copaxone, tysabri and now Gilenya ( a pill).  There are many new drugs coming up soon, as well.

Good for you to move on to another neuro - this is your decision to make and the doctor should be objective and available to answer your questions but not force you into something you feel uncomfortable with.

I hope you'll stick around and share more of your story. WE can always learn from people like you who have seen the worst of MS and come back from it.
best,
Lulu