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Old 01-31-2008, 02:52 AM
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Becky21 Becky21 is offline
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Join Date: Jan 2008
Location: Heartland
Posts: 2,010
15 yr Member
Becky21 Becky21 is offline
Magnate
Becky21's Avatar
 
Join Date: Jan 2008
Location: Heartland
Posts: 2,010
15 yr Member
Default 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.
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Becky21
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IMAGINE
RRMS - 1992 -- SPMS - 1993
Not on DMD's



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