I too am glad that you have such a wonderfully supportive neurologist, it also somewhat pleasing to hear that even though you have a progressive form of MS and have had some progression, that your neuro thinks this has not been too bad over the 9 yr period. I am also really glad to hear you have the meds sorted- here in Australia a lot of us fear being re dx as secondary progressive because the pharmaceutical benefit scheme that we get our prescription through will only support the meds for Relapsing remitting Ms at this stage- as soon as we become SP, we become ineligible and as you know the full cost is extreme (around $1200 per month here) and those are the only two options we have for medications in this country- i have been told that most neuros are slow to re classify patients for the same reason because there is clear evidence to support the DMD's in SP too now. I hope things continue to go smoothly for you!

kebsa,

Thank you for your kind response. I am glad everything worked out as it did. I am so grateful to have such a good Neuro who is not only very intellegent but also takes an interest in me as a person. Very rare these day.

My MS went from RR to SP very quickly. I had very obvious symptoms in early 1992 that developed to SP by Jan. of 1993. Only one MS med was out and my Neuro (same one I have now) did not want to consider putting me on it. It was for RR and she was leery of the med and some of her patients weren't doing well on it.

Her thinking now is that it is better for me to be on a med even with SP because there are several available that hopefully will prevent me from getting worse.

I hate to hear that meds aren't available for SP in Australia. If there is a slight chance that they help with SP, they should be taken in my opinion.

I agree with your neuro. Jim has said the same thing. He would rather take the shot or any advancement in treatment and hope it's doing something than to not take it and wonder.

Glad the Avonex is good to go for this year. Sheesh, that other place was a pain and it's a shame you had to do the leg work.

Hugs GO!
Sandy

Becky, reading your post did wear me out; but it was because I was putting myself in your unfortunate shoes! As if this disease isn't already difficult enough, sheesh!

Sorry for all the hassle, but glad you were able to arrange for some meds to get shipped. Hope things go well for you, friend. XOXOXOX

Sandy,

I think I have been so blessed over all these years to have had such a slow progression of my MS. I think I had a false sense of security that I wouldn't get worse and had to believe that because the other doctor's didn't want me on the MS drugs. They didn't know what to do with me.

As I have said many times, my Neuro is just the greatest and if she thinks I need to be on Avonex, I'm going to take the shots. She said even though it has been a slow progression that it could change it's course at any time and was not worth the risk of doing nothing.

I'm glad I'm set for a year with the Access Program and as I understood them, they will continue to provided it to me from now on. ACS was trying to find funding for Medicare D and could not find any for me. It was a waste of time because I told them many times that I did not have any money for a copay.

Hugs to You GBA\BFF

Hi Twink,

I couldn't believe how long my post was after I saw it. You probably had to rest a few times to finish reading all of it. LOL

I was getting pretty stressed out trying to find a yes or no answer from ACS. I sure don't need any additional stress from them since I am already dealing MS and huge personal stress. I knew they could not find funding for me dealing with Medicare D because I am not destitute enough to qualify for most programs.

I am so thankful to the Access Program for stepping up when I told them I could not get an answer from ACS. I told them I didn't want to miss a shot and begin again and go through the horrible side effects. I have pretty mild side effects now after almost 6 months. I told them I did not want to talk to ACS again. The rep. took over and got everything straightened out. I hung up the phone and took a very long nap.

I have got to send the Access Program a note complimenting the wonderful way their rep. handled my case. She deserves a pat on the back for working until she got an answer for me.

Hope you are doing ok my friend.

i'm so glad that it FINALLY got all worked out, becky. sheesh, i know it was such a pain tho & what w/ other stuff i can imagine you just wanted to say forget about it, but...

you hung in there, got it 'er done () and now u know you won't have to go thru all the darn side affects all over again.

got a love your neuro, girl!!