Taking Shaky Control of My MS Treatment

Don’t you just envy people who always say and do the right thing? My sister is like that. Unfortunately, this admirable trait didn’t trickle down to her little sister. I’m always at a crossroads, it seems, trying to figure out my next move and hoping I don’t make a mistake.

I had a neurologist appointment a few days ago, and I’m fretting over my next move. I think I have lost my confidence in this fellow which is not good. It’s bad enough dealing with MS on a personal level, but it’s another not to get the support you need from a medical professional. Here’s an interesting observation I’ve made about neurologists in general: They do not have senses of humor. I realize MS is a serious subject but a little friendliness can mean a lot. In the 14 years I’ve had MS, the two doctors I’ve dealt with have been quite cheerless.

Anyway, all this brings me to my dilemma. At my doctor’s visit, he finally confirmed what I have known for a year or so: I have entered into the secondary progressive phase. This phase affects 90% of MS patients and usually occurs between 12 and 15 years of onset. It’s characterized by increasing weakness, stiffer legs, bowel and bladder trouble, and worsening fatigue and depression. The exacerbations are farther apart but previous areas of attack start to become bothersome.

So what to do?  All the medicines on the market are for first-stage relapsing-remitting MS. There’s nothing out there yet for secondary. My doctor did not offer anything except taking the 40 mg Copaxone but now doing so every other day. I currently take it daily, 20 mg. Really, nothing is different except the medication schedule. Then he told me that there was no proof that taking this medicine – or not – would be beneficial in treating SPMS. So, in effect, he was leaving it up to me to decide a treatment. Take the stuff or don’t take it.

All this does not sit well with me. I need a better plan of action. I realize I’m probably spitting in the wind, but I’m looking for a new neurologist. We are all ultimately in charge of helping ourselves, and it doesn’t feel right for me to stay static. There has to be something else I could do. However, with my track record of always doing the wrong thing, I’m a little bit leery of jumping ship. In any case, I’ll just hope and pray that some of my sister’s unerringly positive outcomes will finally find their way to me.






7 Comments (+add yours?)

  1. ksdisque
    Oct 07, 2014 @ 20:47:47

    I understand your sentiments completely! I have RRMS. My first symptom was optic neuritis in 1997. All of my tests were negative so they said they couldn’t diagnosis it until I had a new/different episode. No one told me to have an MRI again in the future. Fast forward 15 years to 2011 and I think I’m losing my mind. I feel just awful. I thought maybe it was menopause. But it was super active MS over 5 years. I have so many lesions you can’t even count them. I’m lucky to be high functioning. I did have to fire my first MS specialist though. She was an “expert” in Dallas, but did not want to really answer my questions. She said I didn’t need to worry about those things. So, I found a new one. This specialist is fabulous. His name is Dr Fish Greenfield. He goes by Dr Fish. How funny is that!!! I love him. I started on Copaxone 20 ml daily. After 2 years, I wanted to try an oral med – Gilenya. It caused dangerously high blood pressure, liver damage, and a severely suppressed immune system. So after 6 months, I went back to Copaxone, but now do the 40 ml 3 times a week. I’m doing great! Check out my blog at ksdisque.wordpress.com. I blog about MS on Mondays.


    • Miss Jan's Words
      Oct 08, 2014 @ 08:53:20

      I’m so glad you’re doing better and that you’ve found a new specialist. To me, that’s going to make all the difference. You’ve got to have a medical professional you can trust. I’m going to check out your blog. Thanks for sharing.


  2. Catherine
    Oct 08, 2014 @ 18:58:00

    Trust yourself and “jump ship!” I completely agree with the importance of having someone who has your best interest at heart! All studies have been inconclusive regarding stopping DMD’s for RRMS with progressing to SPMS (that’s me too!) The “what will happen” if ever when left unprotected. My neurologist believes it’s not worth the risk. I agreed. Great job being your own advocate! 🙂


  3. lissms
    Oct 11, 2014 @ 10:36:16

    Sounds like jumping ship is a good option, one can never go wrong trusting their gut!


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