I Was Wrong

PTI was wrong. I know, I know, you can’t believe it! But I was. Actually I was wrong twice.

The first thing I was wrong about was physical therapy. My orthopedist ordered an MRI of my back so that we could begin epidural shots to relieve pain. However, the health insurance would not approve an MRI until I went through six weeks of therapy.

 

So I thought, I don’t need any more physical therapy! I’ve been doing it almost every day for the last four years and more therapy won’t do any good. However, I am seeing great results from the new exercises and the old exercises which are enhanced to the next level. So I was definitely wrong about that.

The second thing I was wrong about was the type of multiple sclerosis that I have. When I was first diagnosed four and a half years ago, the neurologist wasn’t really sure what type I had since it had been misdiagnosed for so many years. So I went on a disease modifying therapy that had been approved for relapsing remitting MS. I didn’t like the side effect of flu like symptoms, so I went to another DMT, and again the side effects were something that I did not want to live with. It was also getting harder and harder for me to give myself a shot due to my right hand weakness..

So I was able to switch to Tecfidera, which is a pill. After many months, my white blood cell count dropped to an unacceptable level. So I haven’t been on a DMT for quite a while. When Ocrevus was approved by the FDA, I had many people phone, email, text me about the new medicine. I told everybody that I did not think it was approved for the multiple sclerosis type I have. I assumed that since my symptoms were slowly and gradually getting worse, that I was probably in the secondary progressive stage. Click here  for more info about the types.

However, at my last visit with my neurologist she said she was going to start the process for me to be approved for Ocrevus, the newly approved medicine. My first thought was how can I be approved for this medicine when I neither have relapsing remitting or primary progressive MS. Those are the only two types of multiple sclerosis that it has been approved for. So I questioned my neurologist about why she thought I had primary progressive MS.

In looking at my medical report, and the fact that I never had any symptoms that totally went away, and with my symptoms getting worse, she thought that was the proper diagnosis.  I was very surprised because I thought the people with primary progressive MS got really bad really fast. She explained that is not what happens to each person with primary progressive MS. As I look back at my symptoms, I began to understand.  She also said that I would be the only one in her practice that she would recommend it for.

Ocrevus is an infusion which means it is an injection that the hospital has to administer and monitor. The first dose will be half a dose and the second half will be two weeks later. After then it will be every six months.  The first two infusion injections will take about 2 1/2 hours with an hour of recovery and monitoring time. After that the full dose will be given every six months and take about 3 1/2 hours with one hour monitoring time.

I have taken the following technical medical terms from the Ocrevus website:

“OCREVUS is a recombinant humanized monoclonal antibody directed against CD20-expressing B cells. The precise mechanism by which OCREVUS exerts its therapeutic effects in MS is unknown, but is presumed to involve binding to CD20, a cell surface antigen present on pre-B and mature B lymphocytes. Following cell surface binding to B lymphocytes, OCREVUS results in antibody-dependent cellular cytolysis and complement-mediated lysis.”

It’s interesting that it says that the precise mechanism is unknown. When I started Ampyra, the information I received said the exact same thing.  There’s so much unknown with multiple sclerosis, it can make a definite negative effect on our well-being. We just have to trust that our doctors are making good decisions, as well as making sure that we do our own research and are in agreement. We have to be our own advocate!

The hospital that my neurologist is connected with (who will be doing the infusions) said that it might take up to six weeks. This is because the staff needs to be trained on how to administer the Ocrevus. I found out last week that the pharmacist was out of town this week. So I hope next week the training will occur, so I can get started on the treatment.

Your prayers are much appreciated as I go through this process. Thank you in advance!

“Eventually all things fall into place. Until then, laugh at the confusion, live for the moments, and know everything happens for a reason.” – Albert Schweitzer

 

 

 

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18 thoughts on “I Was Wrong

  1. Without medicine I can still have relapses that keep me technically in relapsing remitting but I also continue to get worse which makes me secondary progressive. My doctor says my diagnoses is MS the type isn’t specified to insurance

    Liked by 1 person

  2. Definitely prayers for you, Jo Ann. Is there a study group your doctor can get you in? I’m in a study group for my chemo. Modern medicine is amazing, but I think it can get better if these pharmaceutical companies hear from the patients who are using their product.

    Liked by 1 person

  3. I did physical therapy too. My legs stopped working and I am a dancer. Still dancing but I only do adult ballet now. I did tecfidera for 2 years but started getting worse. We discovered it wasn’t working. Now I’m on ginenya. My doc says I am relapse remit too but I am still getting worse. Mostly sick all the time, flu and stomach virus stuff etc. My next step in infusions too but she wants to keep me here for a year. Hang in there. I think all of this is experimental

    Liked by 1 person

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