Neuro Follow Up Appointment
 

I had not been to a Neuro for 9 years until last July and went back for my follow up Tuesday. She started me on Avonex on August 19th which is the first MS drug I have ever been on.

She was my Neuro when I was being diagnosed in the early 90's. She moved out of the city and I had bad luck with Neuro's so I just stuck with PCP's who treated my MS symptoms. I have additional health problems so none of the doctor's wanted to put me on the MS drugs since they were so new when I was diagnosed. They now think the additional problems are MS related.

I had a copy of the original workup my Neuro did in the early 90's so that was great for her to be able to compare how I was progressing after all of these years.

She confirmed again yesterday that it was definitely SPMS and that after comparing my workups, she could tell that I was worse and the progression had been very slow over the years.

She said she could tell that I was more unsteady than I was in July and asked me if I had been falling. I told her that my balance had been a little worse lately and I almost fell several times but no falls. I told her I hadn't left the house in 15 years without my cane and am moving even slower than usual. I also told her that my cognitive functions had been a little worse lately also.

She is very pleased about the slow progression and does want me to stay on Avonex. She said there is always a chance the MS could change it's course and she wants me to be able to continue to be independent and as mobile as I can. I have done well on the Avonex and have finally passed the bad side effects part and now just have mild side effects. Thank Heavens!:)

I was getting a very frustrated with ACS, the company that works with the Avonex Access Program. They contacted me in October regarding funding assistance, got my info and said they would call me in 4 weeks. They work with Medicare D to try to find assistance for people in need. If they are not able to help, they send the case back to Avonex Access Program. I never heard back from ACS.

After numerous phone calls and "don't know" answers from them, I contacted the Access Program. I told them that ACS was not helpful at all and I needed to know if I was getting Avonex or not. I took my last shot last weekend and I was getting stressed out with ACS attitude and lack of answers. Their hands have been tied waiting to hear from ACS also.

They stepped in, finally got the answer from ACS this afternoon that they could not find any funding for me. The Access Program re-enrolled me in the Access Program for 2008 today and will continue to provide me with Avonex. They are sending me a shot overnight and are setting me up for scheduled delivery tomorrow.

It only took 2 phone calls and 2 hours on the phone today to get this straightened out. I am very glad that it is finally resolved and very thankful the Access Program helped so much. It should not be such a pain to get an answer about the meds.:(

Becky, I'm glad you got it straightened out and are able to get your Avonex again. No, it shouldn't be such a hassle to get it, you're right.

sorry you had to go through all that to get your meds. :hug:

But I am glad to hear it seems that the Avonex is working to keep the progression slow. That's always great news!

Becky, great news!!! I am so glad your appointment went well and that you got everything straightened out with the Avonex. :)

Susie, Fin & Beary,

Thank you all for responding to my good news.:)

I can't believe how long my post was.:o LOL I just kept writing and had no idea until after I posted that it was so long. It probably wore you out just reading it. LOL:grouphug:

Becky,

I'm glad your meds worked out. That just seems like unnecessary frustration, but it worked out.

And now we can continue our shots together!

Did mine, ready for bed!

Night!

Hi,Becky I'm glad everything worked out for you.

I have found that if you have a great MD, you will find a great nurse standing behind them. please call the MD/neuro and ask for help in accessing the meds this MD wants you to be on. Most nurses have a way of cutting the crap out of the conversation.

hope that helps.

I received my Avonex shipment this morning.

I have found that if there is ever a problem with Avonex, the Access Program will work it out. I sure had a wonderful rep. from the Access Program step in and get answers and will not deal with ACS again.

All is well so I can take my shot tomorrow! Yippee:):p

I received my blood work from my Neuro today and everything is perfect.:) I am good to go for the Avonex. Yippee, shots for another year! LOL

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:hug:

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.:hug:

i'm so glad, becky!!
 

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 (:D) 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!!