By Cherie C. Binns RN BS MSCN
Lately, it seems I have been hearing from a number of folks who read this website as well as on MS Forums and Chat rooms that they have gone off all therapy for MS because “the treatment is worse than the disease”. Some are even refusing MRIs to document whether their illness is stable, progressing or may not even be present. Most have refused LPs (lumbar punctures) to confirm that they have MS because of potential dangers associated with the procedure (pain with the procedure, spinal headache, potential need for blood patch, etc).
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I started with MS long before we had treatment for the illness and diagnosis was difficult to pin down because docs did not want to “pronounce a death sentence” on a young adult when they might live a fairly normal life if they were oblivious to the illness’ presence. For 19 years, I had classic relapses and remissions with vision loss, spasticity, numbness and tingling, incredible fatigue, cognitive and emotional symptoms, and bladder/bowel symptoms. My caring doctors wrote this off to stress since I was a mother of two young and active children and I worked second and third shift so my husband could work days and one of us always be with the children. So on top of all this, I was sleep deprived and my one stable adult relationship was compromised by work schedules.
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19 comments:
Well said, Cherie. Thanks for sharing your experience.
I have a similar story to yours in that I was not put on any disease modifying treatment for years after I had MS (undiagnosed or diagnosed). I am curious, however, in that I have NEVER "felt better" as a result of taking Avonex, Rebif, Betaseron, Novantrone or Copaxone. None of these drugs have ever served to reverse any of my symptoms of MS. In your article, it sounds like your symptoms were somewhat reversed after you started therapy. Do you attribute those reversals entirely to the drugs? I'd like for you to elaborate on that topic if you could.
M. Jacob...
Part of the fact that I "felt" better may have come from the decisions to take charge of my life and eliminate unhealthy lifesytles. I also was able to get off a half dozen medications that had side effects that made me feel depressed, fatigued, mentally unclear.
I used the opportunity to be treated to treat myself to as much of a new way of living as was possible under the circumstances.
To me, it seems if we put all our faith and hope in one medication or one diet or one exercise program or one smoking cessation effort...we are missing the boat of many possibilities.
I encourage you and others reading this to think big and dream big each time you are offered the chance to make a difference in the state of your health.
I tried Copaxone (non interferon), it made me worse oddly enough. MORE numbness and bouts of optic neuritis as well as shock-like sensations from my groin that would run down my right leg. (Stopped when the Copaxone was stopped.)
Just stopped Rebif as after a year my doctor and I came to realize that IT and not my MS has made my walking and spasticity worse. It seems I have had a rarish reaction to it. Before the Rebif I could walk with a cane. After a year of Rebif I had severe spasticity, muscle weakness, and could barely walk at all. EVEN THOUGH MY MRI SHOWED NO NEW LESIONS OR MS DISEASE ACTIVITY.
Side effects can be more than just the "flu like" symptom ones and every course of MS is different. I'm in agreement with the doctors that believe that the interferon therapies currently available are not a good enough treatment for this disease. I will be trying Axonex (the same Interferon 1-A as Rebif) for now, but am truly thankful that many new options are due to become available in the next few years. MS DOES need to be treated and not just be left to do what it wants. We just deserve MUCH better treatment options. I am very hopeful about the future and the advancements that will benefit all of us with MS. :>
Thanks to the work of The Myelin Foundation, the Hadassah Medical Organization, The Myelin Project... To name just a few...
Kelly,
Again, it is not just the medication. It is exercise, stretching, changing unhealthy lifestyle habits. All this goes into makeing a treatment plan more effective.
What are you doing now to treat since you seem to agree that treatment is the way to go?
Cherie, I so appreciate you sharing your story. My journey has many similarities with yours. However, I am one of those people who chooses not to undergo treatment anymore, even though I may rethink my decision at some point. I am in a wheelchair full time with PPMS, have tried several different treatments with little success. The best treatment options for me after many opinions are high dose steroids and chemotherapy. Copaxone had little effect as did other MS meds. Steroids helped relieve optic neuritis, so I leave the door open for those if my eyes flare up again, but all in all the steroids made me feel much worse than I do now, and caused me to gain quite a bit of weight. I take daily pain meds, meds for spasm, RLS, interstitial cystitis, etc. but none of the "disease modifying" drugs has ever changed the need for these meds, so why take them? I already had 30% brain atrophy at diagnosis, it hasn't gotten worse, I can't walk anyway so why be miserable from steroids or chemo? People with Relapsing Remitting have so many treatment options, those of us with PP have much fewer with less positive result. So yes, I choose to live my life eating as healthy a diet as I can, being as active as I can, and accept my limitations trying to keep a positive attitude. I feel much better about myself when I am not 40 lbs heavier and my breathing is not labored, body not swollen and am i am not irritable to the extreme from steroids.
I appreciate that you wish others not to experience what you went through due to a deficit of treatment, but some of us choose to live with the disease without medications due to the fact that for us, the medications make daily life worse. Thanks for letting me speak my mind :)
Terrilyn,
Glad to hear you are working also with diet and activity level. There are drugs that are alternatives to steroids and cause fewer side effects should you need them. I recently experienced Cytoxan for several doses to try and bring inflammation under control since I can no longer do steroids. I honestly thought it was the most benign of the meds I had taken to date. No changes in weight, heart rate, BP, insomnia... but it helped tremendously to improve vision, cognition, emotional lability, fatigue and balance.
So I would encourage you to ask your doc about one of the many alternatives such as Cytoxan, Methotrexate, Immuran, CellCept. All have been shown to reduce inflammation in MS. Also, if you are relapsing (it sounds like it when you talk about vision problems) you are not PPMS but may be PRMS (Progressive relapsing MS) for which there are more treatment options available than for PPMS. I encourage you to speak with your doctor about this possibility and I applaud your positive attitude about doing what you can with what you have.
Thanks Cherie, I always enjoy your contributions to this newsletter.
Joe
Thanks for case histories, how different we all are.I had my first symptom 1967, parasthesia down one half of my body - even down to half my tongue. I'm a nurse and I thought "i've either got a subarachnoid haemorrage or MS. But I got well after a few days and got on with my 3 children, a big house move to the country, much activity - hill walking, and OU degree during which I started getting peculiar loss of feeling and just involuntary dropping things, and never connected it with the first symptom. I had the "concrete wellies" symptom but as I was going for a new job never went to Dr.! A lot of stress ensued (unconnected) and I got divorced. A couple of years later I woke up one Sun. with misty vision in one eye, went t eye hosp. and was sent home! On Monday pain started..... I went back. by this time I couldn't see out of this eye but the nurse sat me in front of an eye chart after I'd said I can't see. She covered my good eyr and asked me to say what I could see on the chart, when I said "what chart" she said oh you really can't see... I just said 'no" and there was a lot of running about and doctors and I was transferred another hosp. ward and given steroids - too late and never recovered my sIght. I went back to my beloved job for another three years when increasing fatigue and loss of balance and cognitive faculties made me take disabled retirement.
I took MS in hand, low fat diet, became vegetarian, took up meditation and became a Buddhist and ditched a very stressful relationship - and HBO completed my return to fairly normal life. I'm gradually deteriorating but my body is getting old but I've never been offered any medical treatment for my MS, only discovered how much is available for young people when I read it on sites on my Mac.
Good luck to you all. Love April
I started LDN.. I have not felt better in the almost 10 years of taking MS meds. The treatments made me sick. I have done Avonex, Rebiff, Copaxone and IVIG infusions. Being off the meds made me have a better life! I hate saying it but its true... I would rather deal with MS than being on meds and not having a life....
April,
Thanks for sharing your story. I am now on Cytoxan and doing much better than in well over a year. There are treatments out there that can help some at almost any age and any stage.
Jeanie,
You ARE on treatment...and one that works for you. We are all different and you pushed till you found something that helps. That was the point of this article. Many of us responding here know that we are better doing something about our MS than we were when we did nothing.
Congratulations to all of the winners out there who are plugging along and living life and taking care of themselves! I applaud you.
I was first diagnosed to have MS in March 2009. I have decided not to pursue any drug treatment options and am doing okay. I am sufferring from stress & depresion according to my Neuro Dr and recommended that I seek counsel/therapy from a "shrink"! So, after months of consideration, I have decided to talk to a "head Dr" (even though I've always not favored the idea of me ever seeing one) and see if he'll be able to pshco help me through some of this emotional crap I'm experiencing. Are any of you seeing a shrink, or have you in the past regarding your MS? I'd love some feedback, please. :-)
Thanks!
Jerry
Jerry,
I think most of us here who are living with MS for any period of time have seen a "shrink" at least once since depression is such a common manifestation of MS. I know I get more depressed and have poorer control of my emotions when I am in a flare or have a lot of inflammation in the CNS (on MRI). See the shrink and see if there are suggestions for medications or counseling or activities that you are open to trying. And good luck. Depression is the pits and I would not wish it on anyone.
Thanks Cherie! I have my 1st appt with the "shrink" 9/28/09! First available date. :-)
Do any of you attend MS group meetings? You know, kinda like an AA meeting...which does help alcoholics. I know, been to a few of those over the years. There are group meetings held throughout the month in my market and am wondering what they're like, please. The Neuro Dr said I've had MS for "about 2-3 years". I guess he was calculating from all of my tests results and MRI. He also said I don't have PPMS - which from what all I've read about PPMS makes me VERY thankful! :-) At least now I know what's been sorta wrong with me over the last couple of years. I was told in Oct. of last year that I had Bell's Palsey! That was by my opthomoligist when I went to see her because of my sudden funky vision issues. She did recommend that I see a neuro and thus the tests began. My neuro told me I did not have Bell's Paley but I'd had an MS attack, (double vision, loss of balance, slurred speach) were most of the symptoms I was having.
Has anyone heard the possibility that Lisinopril (a high blood pressure med) can reduce MS symptoms? I know there's alot of research going on world wide and am excited about the hospital in Canada found where some drug reversed MS in mice!
Any how, I'm still new with this and have ALOT to learn yet about MS, my options, etc. I have a very stressfull job and am not real sure how much longer I can stick with it due to me not being able to handle stressful situations as well as I once could.
Thanks to all for listening and hope to be hearing back from some of you soon. :-)
Take care,
Jerry
I did betaseron and copaxone with no improvement and the copaxone made things worse.
But, 4 other drugs have not only improved my MS symptoms, but have made me feel a lot better.
IV steroids - when I need them and with no taper help tremendously.
Novantrone - a WONDER drug for me - and worth every bit of the risk.
Tysabri - had improvement, but not as good as Novantrone
Zenepax - what I am taking now - improvement on the level of Novantrone and without any side effects (that I can feel) other than hair loss.
There is NO question for me that taking the right drugs helps my MS AND makes me feel better
After the Rebif I started feeling MUCH better. Then I tried JUST ONE SHOT of Avonex and OUCH!!! I was right. I have a BAD reaction to interferons and my body seems to fight them. Now I am living with stiffened up legs, a body with a spastic stretching tendency, and difficulty moving. All from ONE SHOT of Avonex.
At least I know that it gets better after some time (it did after stopping the Rebif), but it is still very painful and terrifying. I agree with Jeannine, the meds make me feel MUCH sicker and in more pain than the MS. I will have to wait until they make better meds. Here's a link to some possible future hope for us all. One of the men mentioned is Dr. Howard Weiner who wrote the book "Curing MS". Let's all cross our finger...
http://hadassahsc.wordpress.com/2009/06/29/a-treatment-to-swallow-by-wendy-elliman/
Oh! I should have said I felt much better after STOPPING the Rebif. After Copaxone, Rebif, and Avonex I am looking at three strikes and the therapies are out. For now that is on the advice of my neurologist who is also upset by my body's reaction to them all so far. He does not want for me to try Tysabri and so on as he is not sure of safety for me...
Kelly,
I'm sorry to hear you've had such a difficult time finding meds that have tolerable side effects. I do believe we are each different and when we can't tolerate something , there has to be another out there that will be helpful. Over the years, I have found that to be the case as you'll see if you read today's article "Alternatives to Steroids".
Hang in. Get another opinion and another if need be. Look into complimentary and alternative therapies to ease some of the symptoms. Best of luck in your search.
Cherie,
Thank you so much for sharing your story. You helped me about a year ago when I was on steroids and had questions about hair loss. I'm very happy to say it grew back, but I'm glad to know about other options besides steroids.
I, like you, am lucky to have a healthcare background; I am a registered dietitian who provides nutrition support in the ICU. It can be very hard when I have to provide an MS patient with tube feedings. You're really not supposed to tell the patients anything about yourself, but I decided to tell the MS patients that I have MS, as well. The patients and their families take comfort in knowing that someone has an idea of what they might be going through (even if I'm not in their position at this time). It can be tough for me to see what my future may hold, but I take comfort in knowing that I am helping someone.
So I thank you for your input and all you do to help inform us. I know it can be tough, but you seem like one tough cookie.
Again, thank you for your story.
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