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