Saturday, November 11, 2017


A few changes have happened in my life recently  and there are more on the way I am sure. Such is Life.

Some of us don't like change. I am in that camp. I have never liked change. O.k. so for  the past seven some years "Change" has been pretty much on the front burner. Though, basically,  all in one aspect of my life. That being my MS life.

I haven't had many bad flares or exacerbations, just a constant slow progression. Symptoms remain relatively the same as they have been since diagnosis. With the exception of the double vision that got me the diagnosis. Thankfully that hasn't revisited me. *T.Y.J.

I've had three DMM changes. That's changes to my Disease Modifying Medicine. The three that I've tried at the suggestion of my much trusted Neurologist ended up not working well for me. Though the only way you can know this is to do a MRI to see if any new lesions show in the images a MRI provides. The DMM's don't make one feel better. I fact some of their side effects can make you feel worse.

The first MRI I had was my diagnostic MRI. The base line imaging. It proved my double vision was all in my head. Haha. Just a little humor I like to say on occasion. It is in my head but, No, I mean.  The MRI proved my double vision was because of lesions in the optical region of my brain. As well as in some other places. At that time my first Neurologist, Dr. James L, suggested that I opt to be referred to another Neurologist that specialized in MS. I thanked him and agreed.

The new Neurologist was a fount of information and help. Much trusted. I called her my fire hose of information. She got me going on my first DMM. Copaxone. I was a couple years on that one before my next MRI. One may wonder why I would wait so long to do the next MRI. It wasn't because I fear them. On the contrary. I don't fear them at all. I rather like them. Solitude. Granted Loud! solitude. But, I just pretend it's a rock concert and rest.

Well, this second MRI showed some new lesions. Though I was tolerating the DMM o.k. my Neurologist thought that a different DMM might do better for me. So I agreed to change and she got me going with a new DMM. Rebif. A couple more years pass until my next MRI.
Why so long again? Well, I don't have insurance. I self pay for my office visits. My Neuro has been a great asset with providing me with information to get on the free drug programs available as well as MSAA's help with paying for my MRI's. Though at that time MSAA only would help every other year. No problem for me. Most grateful for their help.

Well you have probably guessed. This third MRI showed more new lesons. So change comes around again. My Neuro suggests a different DMM that has shown better success rates to slow the progress of  MS in clinical tests. So I agree and changed again. This time at least it is one that doesn't require me to shoot myself.  Which by the way became another joke I would use. I don't mind shots. No fear of needles. They've been a major part of Life here.

Onward. I started taking the new DMM . Tecfidera. It's tolerated by me pretty well. A couple of side effects but not unbearable. Hair loss. Weight gain. This DMM does require blood tests at least every 6 months though. Watching for a drop in blood cell counts. If they drop below a certain number my Neuro will pull me off this medicine.

So after two years guess what. My blood counts drop to an unsafe level.
My Neuro doesn't pull me off with hopes that they will rebound before the next blood draw. She suggests if I need to do a different DMM it should be one of the new infusion drugs. These are reported to be very effective at slowing the progression. I tell her, point blank, that infusion drugs are off the table. I won't do those.

Well, six month later my blood counts haven't rebounded. Even though this current DMM has halted my progression, according to the latest MRI, if I stay on it I will need to do blood draws every three months and I run the risk of getting a serious infection that would set off a major flare. One of these infections could involve a life threatening brain infection.

So, last year, was my fourth and latest MRI. It showed that the DMM I was on arrested my progression. It also show an anomaly in my lesions that I still haven't got to talk to my Neuro about.  That might need to be a different post to this blog. Maybe. Might couple that with a blog about my last non-appointment. I've had some changes. I am not as patient as I use to be.

O.k. enough history. In this post I've tried to give a base line explaination for the next change.
 After my last blood draw, and last appointment with my much trusted Neuro, more than one change was poised to take place. I found out, or rather, came to the conclusion that I would need to go off my current DMM or continue with it at a higher risk. I would need to have blood draws every three months to watch for lower blood counts and infection.
Oh, By the way, Point of note. Because of this DMM's side effect potential, my blood counts might never rebound completely.
Through a series of phone tag conversations my Neuro relayed her position of getting me off my current DMM and getting me started on an infusion drug as soon as possible.
She must have forgotten I don't want to do an infusion drug.
Among the phone tag conversations I discovered that my Neuro would also be going on sabbatical in December and was suggesting other Neurologists to her patients. Her office would gladly refer me to one. For my case Dr.L suggested Dr. P. She's not in our immediate area but, 30 some miles west.

Change number one.
So, after a few days of stunned shock, I decide to go off my current DMM. I am not staying on it to see if it drops my blood counts even farther. Dr. L,  during our phone tag conversations, relayed that this would need to happen in a timely fashion so the Tecfidera could leave my system before I started the infusion drug or an infection could happen. She must have forgotten I am not doing an infusion drug. Be that as it may. I went off my DMM and currently letting it get out of my system

Change number two.
I made arrangements to see Dr. P. She will hopefully fill my need for a new Neurologist. Dr. L's office gave me the referral I needed and Dr P's office has been very helpful getting me set up for a visit next week.

Change number three.
At this point in time it is my decision not to take another DMM. 
I was going to try and explain DMM's in this post better than I think I have before. Suffice it to say. DMM's are not cures. There is not a cure for MS. They do not make one feel better.  The name Disease Modifying Medicine explains what they are. They don't cure though they can slow or even arrest the progress of MS. The disease is still with you. The symptoms and the damage already done stay with you. They still have their effect on one's life.
Some or all of the side of effects of these DMM's are frightening. One needs to weight the costs.

So I am waiting for my new appointment with my new Neurologist. Waiting for any new changes coming my way. They are coming. They always do. As always. Prayerfully. Hopefully.

Trustingly in my Lord Jesus. He never changes.

"Jesus Christ the same yesterday, and to day, and for ever."  Hebrews 13:8 KJV

* that's "Thank You Jesus."


  1. Praying so hard for you sis! Thank you for the update. Really wish this all wasn't so!! Praying for wisdom all around!