“Here…I can fix it…”

What are you trying to do?  Do you need some help with that?  Ok, you figure it out….  

Then I wait patiently until they need me.  I love to fix things.  I am good at it.  (I just need some more tools, and maybe a book on wiring & plumbing).

When I started the Ampyra, I really thought it was going to be a great help to me.  Walking faster would equate to gaining strength.  If I can walk faster, I will certainly be able to walk further, right?  Or maybe not.  This past month or two, I have had increasing trouble with balance and walking.

I need to fix this. 

In thinking it through, I realized the correlation between starting Ampyra and having more trouble walking.  Yes, it is summer, and warm weather can cause MS symptoms to worsen, but we have not had a lot of hot weather.  What plays over and over in my mind is the small percentage of people who experienced relapse or balance disorder in the Ampyra trials.  Maybe that is me.  I am one of the 4- 5%.  So for now, I am going to stop taking the Ampyra.

Ampyra doesn’t do anything to slow the progression of this disease, so I think it is a good idea to just stop taking it and see if that helps.  I will let Dr. Kita know that when I see her again (soon).  Phil accuses me of thinking I know best, and of being stubborn.  Of course I do, and I am.  Usually, we have a pretty good read on our bodies, and we should think for ourselves.  I am not saying that I won’t try Ampyra again after I talk to my neurologist, but for now, I will try a few weeks without it.

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8 Comments

  1. Cindy Foster said,

    August 21, 2010 at 9:32 am

    Is this one of those deals where you’re supposed to find 5 people who agree with you? I might be with Phil on this one – although if I were in your shoes I’d probably do the same thing.

  2. Billie Jo Robbins said,

    August 21, 2010 at 11:04 am

    hmm…For me I probably wouldnt’ go off of a med, without consulting the doctor first….Is there side effects as you go off of it…are you supposed to taper down slowly..those kinds of questions..I hope and pray you get the answers you seek…

  3. annita said,

    August 21, 2010 at 11:33 am

    This really is not a critical medication. My appt is only a week away, and I am sure Dr. Kita will agree with me. I could have called, but I was going to do this either way. I am feeling better already.

  4. Billie Jo Robbins said,

    August 21, 2010 at 1:08 pm

    I am glad you are feeling better!..Keep us posted about your dr. appointment.

  5. Jerry said,

    August 23, 2010 at 5:48 pm

    Before I started my Amprya, I had high hopes but low expectations. For me, Ampyra met my expectations and not my hopes. My walking did not improve. So I discontinued Ampyra after two months. The Ampyra website states:
    AMPYRA consistently improved walking speed in significantly more patients than placebo (sugar pill) in 2 clinical trials (34.8% vs. 8.3% and 42.9% vs. 9.3%)

    So based on the clinical trials, only 35% to 43% of people were helped. Unfortunately I was not in that minority. At least Ampyra did not have bad side-effects for me.

    …just sharin’ my Ampyra experience.

    • annita said,

      August 24, 2010 at 7:42 am

      Thanks, Jerry. I was excited with the initial increase in my walking speed, but it did not help me walk further by any means. It was really affecting my balance. That has improved in just being off Ampyra for a week.

  6. GEORGE VALLE said,

    September 7, 2010 at 8:19 am

    I WOULD LIKE TO TRY THIS DRUG. HOWEVER THE DRS. I SEEN HAVE NO INTEREST IN THIS MEDICINE OR ARE CAUTIOUS ABOUT SIDE EFFECTS, ALTHOUGH I NEVER HAD SEIZURES OR HAVE A KIDNEY PROBLEM.
    I LIVE IN MIAMI FL. AND WOULD LIKE TO KNOW OF DRS. OFFERING THIS TREATMENT…….

    • annita said,

      September 10, 2010 at 6:55 am

      My doctor was quick to try it out for me here in Seattle. Not sure what your doctor situation is, but maybe a hospital/clinic that specializes in MS would help. It is worth a try. Initially, it did seem to make some improvements for me. I was even typing faster. :O) It is another very expensive MS drug, but I easily got assistance through Ampyra and paid only $40 per month. You should seek out a doctor who will be willing to try it.


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