Permalink 12:28:18 pm, by eleanor Email , 1037 words   English (US) latin1
Categories: my life, Thoughts, information


Two weeks ago I started using a new MS drug AMPYRA. For information about this drug click on the site below.


Wow, you should see me move now!  This is been the most dramatic change for me since I was diagnosed with MS.

Actually I have changed medication or added new drugs before but nothing has had the immediate effect to increase my mobility like this has.

When I first started using Betaseron there was an improvement over time. Then I was given Provigil which has helped my fatigue and Nortriptolene (Pamelor) helped with pain. But eventually Betaseron was not effective and a wheelchair was becoming my principle means of mobility. I had even purchased a transfer board as standing to transfer was becoming more of a problem.

It was around this time that my long time neurologist left the area. I saw a new neurologist and then a nurse practitioner but I was not happy with either of them. I was actually told by the latter that I was too old for the ABC drugs and I was going to ruin my liver.

It was time for another change. I had been researching Neurologists in the area so I decided to try someone I had been interested in but his office had been at a distance to visit. But now that he had a local office he was the natural choice.

I have to admit that he made a first good first impression when he stated that age has nothing to do with the decision on the ABC drugs. He had had good results with changing patients to another drug and I started on Rebif.  He also changed me from Pamelor to Cymbalta for pain and started me on 3 months of 1 time per month 500ml sol-u-med. As I am a Diabetic too that had to be added carefully. For information about the prescription drugs for MS click onto:  http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

I started getting better and using my walker more again. Then I treated myself to a new flowered decorated cane for short distances when I used my wheelchair for longer ones. I was even climbing stairs. I was doing so well that my Neuro stopped the sol-u-med. But after a time I had a relapse and when I saw him he put me back on monthly sol-u-med.

After a few weeks I was back to where I was before. And feeling good.That was this past spring and I was busy putting my garden in order. Luckily I was better and able to actively weed,plant etc. But over the summer I began to lose my ability earlier in the day and was more tired. It could have been the heat but I was back in the air conditioned house as soon as it got hot.

Then gradually I found that I was back into losing my mobility,cognition and increasingly fatigued earlier and earlier in the day. I would be essentially good first thing in the morning then I would lose it. Essentially I was spending more time sitting on the seat of my walker pushing it backward and then more time in the wheelchair.  I was also having more cognitive problems. My difficulty recalling names was becoming more obvious as well as my being overwhelmed more often.

I was due for my appointment with my neurologist. When I saw him I told him what was happening and he felt that using the drug AMPYRA would very definitely improve the length of time that I could be more mobile during the day.  As AMPYRA had already been denied by my Medicare Part D Insurance Co. we restarted the procedure. He told me to call my Representative from Congress and the NY State Insurance Commission and he would fight for me to have the prescription drug Ampyra .  He also had me make an appointment with the neuropsychologist to assess me for cognition problems.

I did call my Congressman's office and then as there was a delay I decided to call Ampyra to see if they knew  what was going on. And I then also had a week of relapse where my morning mobility was lost too!

To make a long story short I did finally get an approval from my Medicare D Insurance Co. However  there was a bit of a hitch as they only use a mail order pharmacy that is not in NY State.  I use Epic as my secondary insurance which enables me to be able to afford these high priced new wonderful MS drugs.

As I could not use Epic because the pharmacy was out of state I decided to bite the bullet and take advantage that I was now in catastrophic coverage. This meant that I would only be responsible for 5% of the over $1000.00 monthly cost. This I can afford. In January if it's goes up to 25% that could be a different matter.

Well after many phone calls talking to different people each time and promises of it being shipped the next day(I suspect they use call centers but I guess that's our future) I talked to a supervisor and they did ship it the next day.

So I finally started taking AMPYRA. By the first day I was moving faster and by a week I practically ran across our living room.  I essentially walk with no assistive device  now in the house unless I have to lug something from room to room. As my balance isn't all back yet I do use my walker when I get up at night. Outside in the garden I use my walker or I also just walk with nothing. Occasionally, if it's a longer walk I might use a Canadian crutch. But sometimes I can't find where I put it and end up walking around the garden with no assistive device to look for it. To me this wonderful and funny at the same time.

Will this last? I'm not going there. But right now I can see myself getting steadier walking around every day!

All I can say is  Thank You- Thank You- Thank You.


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