Burned Out
I feel burned out.
Burned out in terms of multiple sclerosis, that is.
And I don’t mean being dog-tired of the bummer symptoms. We’re all in that way!
I’m referring to the notion that maybe my MS has run its nasty course.
The deed is done. The worst is over so to speak.
The thought never crossed my feeble mind till a recent conversation with a dear friend (and fellow long-time MSer).
She spoke of MS patients our age, having had MS a long time with no flares or noteable progression in years, ending their use of DMT’s.
Hmm.
After our chat, I scratched my melon head and went online to check out this interesting topic.
And there it was, Benign MS (BMS), it was called. Described as mild MS that has shown little or no change in progression after about 15 years.
Hmm. (Again)
There has even been studies on the subject proving it safe for some MSers to put down the needles, pills & infusions as their MS may have become inactive over time.
Hmm. (3rd time’s a charm)
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Now before you go chucking your DMT to the curb, let me remind you I am NOT a doctor–just a Broadcast Communications grad with a 2.3 GPA.
So don’t take any advice from me.
PLEASE consult your medical professional.
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I certainly feel I am in the ball park of having benign MS. Clocking in with 27 years seniority (DX’d 1996). And being stable for a good long, long time. In fact my MRI’s have remained unchanged since day one.
I plan to bring it up at the next appointment with my care provider.
Possibly dropping the 2X year Ocrevus infusion (though I tolerate it just fine). But continue to treat my MS symptoms with Baclofen, Botox and lots & lots of daily stretching & exercise.
I am a believer that the less drugs you put into one’s body–the better.
But who knows what’s right.
Trust your gut, I suppose.
What are your thoughts on this touchy issue?
I would love to hear your side with a comment!
Keep moving. And keep fighting.
9 Replies to “Burned Out”
I totally agree Doug, 43 years, on no meds and doing as good as I can! Keep on keeping on. Go Ms’sers as far as we can
Wow, that’s impressive Joanne! Good for you. Thank you for sharing!
I think, it’s a good topic to discuss with your Drs. I’m going to have my last treatment with Ocrevus this July. I have PPMS and I’m going to be 70 next month. My MRI’s have been about the same since the beginning. I have had progression, but Ocrevus is not stopping it and I worry about other health issues after 6 years on it at my age. If anything changes in the future, I’m open to trying something else.
Julie,
I understand completely. I’m 60 but right there with you. Always wished we could clone ourselves…one doing all the meds, while the other doing something else–then, compare what is the best option. Keep moving–keep fighting. Appreciate your response!
I am 70 year’s old and have had MS for 30 years. Twenty years ago I started my journey with DMT’s. In 2003 I started with Copaxone. In 2009 I had a MAJOR exacerbation which sentenced me to a power chair. So in 2009 I was switched to Tysabri. When Ocrevus was approved in 2017 I was switched to Ocrevus. Since 2009 when I had my major exacerbation, no matter what DMT I was on, I know I am progressing and more and more body parts have stopped working. In 2014 my right arm and hand stopped working. I never responded well to Occupational and Physical therapy. I am getting scared because I feel my left arm and hand are getting worse. I don’t want to become a quadriplegic.
Last year I went on a mission and read up on every MS DMT. In doing my research I found there was a pill called “Aubagio”. Apparently I did not get the memo that there was a pill for MS. I only thought there were injections and infusions. I discussed Aubagio with my neurologist and last year was started on the pill. Even starting on a different DMT, I am still progressing. In retrospect I have always wondered if being on all these DMT’s were hurting or helping my MS. I plan to discuss all my further options with my neurologist in June.
I agree with you “The deed is done. The worst is over so to speak”. I am waiting for a miracle.
Margaret,
Yeah, it’s crazy. Maddening, really. I never messed with the pills as was told they were for folks with relapsing MS. Being more advanced I stuck with Ocrevus. Best of luck with your appointment in June–I’ll be having the same discussion in August. You hang in there crazy lady! Think of you often! 🙂
Hmmmmm Interesting. I may be in the minority here but I’m also fortunate that I am on Aubagio which is a simple pill I tolerate well. I don’t have too much of a problem with drugs- give me all the good stuff!! But I can’t help thinking that if there are no new lesions or MS symptoms, doesn’t that mean that your DMT is working? That would be my fear. Though, if I was still shooting myself up with a DMT like how I started this journey, I might be the first one willing to sign up. So like all things on this sucky MS balance beam, we have to weigh the pros and cons and trust our doctor. And if you don’t trust your doctor, get out of the office as fast as your MS body can get you out! And before you judge, the fact that my neurologist is handsome and charming has nothing to do with it!! Lol!
Yvonne,
Right you are. It’s such a crazy dilemma we must face–often many times during our MS journey.
And congrats with your handsome & charming neurologist–sounds like a keeper!
I appreciate your insightful comment. Thanks for joining the fun!
Diagnosed with PPMS in ’91( though looking back there were signs I didn’t pick up on for years before that) I’m 67 and well used to the fun and games of life with MS. It’s been a slow and steady decline for me. My perception has always been that my engines packed up high in the air all those years ago and I’ve been in a shallow glide ever since. So I haven’t hit the ground yet – very much doubt if this a very realistic scenario, but it serves to keep me going! So have I got a kind of benign MS? Well, it has progressed slowly, but progress it certainly does. So I can’t say ‘the worst is over’ – I just anticipate more of the same. Took to a mobility scooter ten years ago, but can still walk around at home in ever-decreasing circles, clinging to a stick and grabbing walls, people, whatever comes to hand! On no meds at all in recent years. Have dabbled with Amitiyptylene, Pregobalin and others I’ve forgotten the name of, but I didn’t see the benefit and didn’t like how my senses were dulled when taking them. Have been wondering about medicinal cannabis though – does anyone have positive experiences with this to share? So KBO everyone – keep b*ggering on, as Churchill was known to say in his darkest hours..