Why Aren’t You Using an MS Medication?

Hi . I wrote several times that the main cause of MS disease are the preservative materials . I cut out them since 2002 . Just eating a natural food and drinks . 0% progression .

Medication is a personal choice and how dare the writer even imply that medication should be pushed!!!

I had HSCT as soon as I found out I was diagnosed. Not in America because we're backwards. We are the last nation that is doing this - why? Every other nation is doing it. I repeat, every other nation is doing it. Such a shame that this is happening.

I have ppms and am not using any disease modifying medications because of the limited treatments for my type of MS. The MS I have was diagnosed when I was in my mid 30s in 2014 and is aggressive. I have tried off-label rituximab which seemed to be okay at first but have had insurance issues after changing. I have also tried ocrevus which gave me bad side effects immediately after the infusions lasting for a month or more. I would have to use a walker after infusions and and get numerous bladder and skin infections. I have stopped that because all it is is rebranded rituximab that is supposedly more easily tolerated. There are many available dmts for people with rrms but not progressive as we know. Maybe something better will come along in the near future such as remyelination therapies but as for now, what can people do if they have a severe form of this disease? The choices are so limited and if the side effects are negative and the potential side effects in the future can be negative and are also unknown because of the treatment being a new drug, other approaches to treating symptoms such as Botox therapy for walking, etc are much more beneficial for me. I wish people would concentrate more on studying the disease and treating or curing it instead of how many people stop dmts. This seems like a waste of time and money. None of us with MS have time to waste. Hopefully something will come along in the near future that is better and not so expensive and doesn't have insurance issues so we can all receive the proper care and treatment. As for now all we can do is cross our fingers.

Diagnosed at age 52 despite having MS symptoms my entire life. Fell in 2010, to ER, received first CT ever, urged to see a Neurologist immediately as scan showed demiliating(sp) disease consistent with Multiple Sclerosis. I fell on a student while continuing to teach in 2012 resulting in trauma to the student and for me, a 2 two week hospital stay. After that, I submitted to at least getting a firm diagnosis of MS. I immediately began the disability process, found a Neurologist, MRI's with/without contrast and lumbar puncture confirmed RRMS. Given my age, 52 and late diagnosis, my Neurologist decided to hit hard and ordered a 5 day, 3 hours per day outpatient Infusion. Felt wonderful afterwards but that type of treatment could not be sustained. I was prescribed Rebif 44mg, self injection 3x per week and used this medication way too long, close to four years. During this time, I was in and out of the hospital for numerous UTI's, and two debilitating relapses. Finally, I decided the main ingredient of Rebif, interferon was no longer for me. Next was Glatopa injections, which within a month, experienced, vitrious bleeding and a hole in my retina requiring surgery. My vision has never been the same as still have large floaters and flashes. Next, Tecidera which after one week could not lift my head up, had intense migraine, loss of appetite and lethargy that was worse than the fatigue associated with MS. Hence, as of August, 2018 I no longer take any DMT of any kind. The August 2018 MRI's showed absolutely no change since the baseline MRI's of 2012. Never experienced the remission my docs anticipated with the use of DMT's. Perhaps, given how long have had MS prior to diagnosis, have already had my remissions. I feel OK and am far more functional albeit challenged on a daily basis. However, have NOT been hospitalized since ending my use of DMT's nor have I had a UTI. I visit with my PCP and Neurologist accordingly. My own research has disclosed the fact that those diagnosed over the age of 50 do not experience the benefits of the DMT's as well as those diagnosed and treated before the age of 50. I tell folks that my disease caught up to the technology, am grateful for being finally diagnosed and the availability of meds to provide treatment. I am certain I am now in the Secondary Progressive phase of MS. That is my story and I am sticking to it.

I tried for 10 years, several different approaches, my MS continued to worsen and some of the side effects were showing up in my lab test and EKG. That plus the expense and hassle insurance companies give you made me give up on them. I am currently in stage ll.

Copaxone caused severe hives for 5 years. Got to the point where I could not inject w/o a dessert plate size welt so I discontinued my daily injection. After the hives were under control I did not restart my DMT. That was in 2008. Haven’t had hives since. Could be anecdotal but I am not willing to play with that fire again.
I

All the DMT's made me sicker than disease. I was put on dozens of other drugs to combat the side effects of DMT's.
Then got breast cancer (not genetic).
So I stopped everything. Went natural & doing great. Feel like I lost 20 years of my life.
Now living again!

My neurologist is stumped. I have no symptoms.

Hi Ed!
I was diagnosed three years ago (Feb 22nd, 2016). I have fatigue, weakness, tingles, numbness in my hands, especially my left (I'm left handed of course) and tingles down my lower backside. I had to learn to walk, brush my hair and teeth all over again! It was especially hard because I am a chef by trade and had to give up my passion or so I thought!

I have the most wonderful doctor! She isn't a hand holding type but more of a researcher. I am grateful for having found her since I have moved to CA. I had been trying to figure out what was wrong with me, exactly, three years before 2016, when I live in Chicago. Saw the best doctors at Northwestern. Until I moved to CA, no one really gave me a straight answer. Keep in mind, I did have one lesion in my cervical spine while living in Chicago. Let's move fast forward to today. After officially being diagnosed with Relapsing MS, I have tried three medications, Copaxone 3x a week (lasted three months because it really hurt, Tecfidera (last a year and a half then had a bad reaction to it, and now, I am on OCREVUS. (I have the JC Virus so my options are limited) I was NOT about to give up. I was doing well on the Tecfidera and liked just taking a pill, but after the reaction I had, it was time to let that one go. My doctor wasn't about to give up, either. Not only did she want me to try the OCREVUS, but also Plasmapheresis. (it's like dialysis but without the medication) Yay! More needles and pokes! :( BUT, I am happy to report that I am going on my second year of the OCREVUS and have done 50 treatments of plasma and I couldn't feel better!!! I can hold a knife again and have been about to cook for my family! I horseback ride, hike, and do kickboxing. I know it's not for everyone, but I wouldn't have it any other way for me. I wasn't about to start my 50's feeling sorry for myself, which creeps up every now and then, and just start living my life as a "NEW" normal with MS. I also do döTerra essential oils, which help a great deal too!

Please don't lose yourself to this STUPID disease!!! Positive and mental attitude are everything, I believe! So, if I need a little extra help with the medication, so be it! Remember, MS IS BS and you MUST stay STRONG!

With all due respect, don’t you think it best to interview & quote actual MS patients? Instead of “Prof G,” who by the way is one of the most arrogant practitioners I’ve come across.

People have to be responsible for their own lives and choices, or we would live in a very dangerous society. What would the "punishment" be for refusing meds? That would take us down a very scary road. Very totalitarian.

Diagnosed 3 yrs ago with ppms, now 59. First two docs " well theres nothing to treat you with yet". Along came ocervus, after 2 treatments i went from walking with a cane to a walker or scooter, stopped ocrevus. Have no doctor offering anything accept steroid infusions. Lost entire left side, now in chair and losing right side use. No drug study wants someone as far along as I am and no doc has any thing to give me.

For me it is the delivery.
I am not against the drugs but I am against making a rash fear based decision so I am taking my time.
Back to delivery, even though we receive an educational session regaurding our disease and the different medications, how they work etc.
The fact remains, the evidence does not seem to be definitive enough for any neurologist to say take this it will make u better.
So what happens is, a bunch of us people who have just been given a scary diagnosis with a vague prognosis (people with varying levels of actual brain damage and likely no medical background might I add,) are handed a list of medications and told to pick.
We are told this is science based and nothing else is so be smart and pick one.
This list including interferons who’s efficacy seems spotty, why are they still on the list?
So, here is the list, I can’t tell you which will/won’t work etc, but u must choose something or else.
Meanwhile, for most of us Canadians, any prior experience with illness in and around us has been, you have such and such, take this and feel better, end of story.
If people went to the doctor with an infection and the doctor said, here is a list of meds, you should probably take one, chances are you will feel better at some point but even if you do feel better it could be a coincidence.... Oh, keep in mind it could also make u worse....
I suspect the general population would respond the same way.
There is a lot of better, more clear research coming out but the majority of fellow MS sufferers I know have no interest/ability to read these papers objectively so they/we are in a really difficult position.
Something for the neurologists to consider really.....
I can’t beleive I am leaving such a long message but this is a frustrating one for everyone and the reason is so obvious to me.

I was diagnosed in 2006, although looking back, I suspect I had my first MS flair in 1987 when I was 15.

My experiences with the DMDs hasn't been a good one. I started on Avonex. That caused petit mal seizures. I was then switched to Copaxone. That's the medication I believe caused me the most disability, and unfortunately led to the end of my nursing career. I was having exacerbations every 4-6 weeks: optic neuritis, diplopia (double vision), oscillopsia (where everything in your vision moves like the credits at the end of a movie), severe vertigo and I needed a cane to walk for mobility and balance.

Tysabri was next. Although I did better on that medication than the others, my immune system was crashing after two years and my neurologist pulled me off. My JCV titer was 4.3, so going back on it again was off the table for me according to the neurologist.

Afterwards, I went on low-dose naltrexone (LDN) for MS. My MRIs remained relatively stable with no new enhancing lesions until the end of the ninth year. That's when I started Tecfidera. It didn't stop the lesions from developing, either. After a year, I went on Rituxan.

After Rituxan, I was told by my new neurologist in a different state that I HAD to be on a DMD. Since my new insurance wasn't going to approve Rituxan, I felt pressured into going on the injectable, Zinbryta. That medicine is junk, and really should be pulled from the market entirely instead of just having a "black box warning." It resulted in surgery to remove stones from my common common bile duct and it caused suicidal ideations. It was also the reason I fired my neurologist. She insisted I stay on the medication.

The last DMD I was on was Ocrevus. I had an anaphylactic reaction to the second half of the first dose. It was corrected by infusing at a much slower rate with a full IV bag of saline after I regained consciousness, and my blood pressure came back up. Six months later I did the full dose. Afterwards, more problems came up. Menstrual cycles that last for five months straight is not normal. Tests were done, and fibroids were found in my uterus. A hysterectomy was performed two weeks ago.

So to answer the question at the top of this page, Why Aren't You Using an MS Medication...my answer is: because the drugs are taking more away from my quality of life than they are helping. I am done with the additional side effects these drugs cause; I am done being told I "must" be on a medication for my disease; I am done feeling guilty for saying NO; I am done with the fear; I am done with feeling worse than the disease already makes me; and I am done with pharmaceutical companies hiding the accurate scope of adverse cases from patients and their physicians.

Sherri

Copaxone first- suicidal within 2 days.
Rebif 8 months, reoccurring infections
Tecfidera, palpitations
Abuagio slowly paralysed my right leg, it wasn't a relapse and improved after stopping, although had lasting bad effects.
Enough said.

My onset of MS was likely 1978 @ age 15. I have a gene varient which backs this up and a former neuro who shared the opinion. I was diagnosed with MS 27 years later. There were more than 25 to 30 non active kesions in my brain at DX and 1 active CSpine lesion. I had 3 to 4 non active lesions plus atrophy in the TSpine.

I was took Copaxone in a clinical trial, which I turned out to be allergic to. Between the Copaxone and the steriods, I devoloped anemia, fat deposits on my spinal cord and eosinophilia.

That drug was supposed to have the least side effects. It is also the least efficacious MS DMT. It took over 2 years to recover from the damage after I stopped taking it.

I never took another MS drug. I sincerely doubt the RRMS drugs at that time would have addressed my issues anyway. Brain atrophy and cognitive impairnent.

HSCT and Lemtrada are supposedly the best at reducing brain atrophy rates so far. There have been trials with Ibudilast and Alpha Lipoic Acid which also both look promising.

I have also been seeing new studies questioning the ability of MS DMTs to have much effect in people over 50. The same study found the best results from DMTs started as close to onset of MS as possible, using high efficacy DMTs before the early 40s.

My main concern is doing all I can to stop or reduce the rate of brain atrophy while the MS nurse keeps trying to force the wrong type of drugs at me.

For now, I'll do it my way and target the brain atrophy, decline the crabs drugs, while I continue to research the best way to prevent more atrophy.

It's sheer, utter ignorance, fueled by a huge gap in the understanding of what each DMT precisely does, the inability to predict if MS will respond to that particular DMT and what side effects, if any, will the DMT produce. Many give up due to poor physician to patient communications, which I always blame on the physician.

My only sibling, my brother, also has MS. I was diagnosed first and after my diagnosis, they tested him to see if that was what was causing his numbness in his hands. For YEARS he would say that he doesn't NEED to take shots because his MS isn't as BAD as mine. I started on Avonex then after 2 years moved to Betaseron, and after 14 years of that I moved to Copaxone and just a year ago changed to Ocrevus. Since diagnosis I have continued to work full time and as a single parent, put my only son through college. Needless to say, DMDs have done well for me to keep me functioning enough that I could accomplish working full time and putting my son through college. How has my brother done without them????? He's now legally blind due to optic neuritis. And I'm still working, driving, and enjoying life. I've had to make certain adjustments, but at least I'm not blind!

DMDs only prevent relapses. There’s no way to determine how many (if any) relapses one would have if not taking a DMD. One may have relapses while taking a DMD; there’s no guarantee. These horribly expensive drugs do nothing for already existing debilities or assisting with symptom management. Affording a drug is not the whole story; just knowing the price ($50,000.00+/year) is being added to your lifetime maximum is mind blowing. This is even more amazing when I recently read one drug company is making $3billion/year on its MS drug. This would only make sense if it CURED MS. I have to post my disclaimer now, at my neurologist insistence, I am taking a DMD now.

I was diagnosed too late, 52 yo, prolly had MS over 20 years. I went straight on Tysabri 2 years ago but it's just too late. Ive lost everything; Tysabri is only being sold to me to make a profit, it
makes my life slightly worse. I don't think I will go back for another infusion.

I've had MS for 15 years. I tried the DMD in the beginning. The meds were way worse than the disease. I tried Rebif and Capaxone. Both were a living hell. I retired and took care of myself.
I'm a R&D Chemist, so I'm not ignorant or stupid. I've spent the last 13 years treating my MS with low stress, vit D supp, as much sunshine as I can get, exercise and eating healthy-ish. Zero progression, zero flare ups.
Now, had I been on any of the DMDs, they'd have claimed that as a victory for them. You CANNOT claim you prevented something that you can't prove wasn't going to happen!

Ed, beyond the best efforts of a doctor to educate and persuade, if a patient refuses to medicate due to what the doctor sees as "avoidance coping", please tell me what you personally think should be meant by "strategies" and "pushing meds"?

As a person with MS for the past 10 years and a scientist I am disturbed by how much insistence that a particular event is correlated with a DMT. In particular, there seems to be many people who had "worse" MS on a DMT than off it. Because MS is so highly variable in time and person it is impossible to draw that conclusion based on anecdotal evidence. And especially for people who have a relapse close in time to starting a DMT, that is not the DMT's fault but it is true that DMTs take about 12 weeks or so to start becoming effective. Also there is no DMT out there that reduces relapses by 100%. So you likely may still have some decline and relapses, however you should have less than not being on a DMT. That is immensely important to realize. The reality is that most people with MS will do better with a DMT. Very few, very few, would be fine either way. But unfortunately many people wait until the build up of damage to their brain and spine is too much before being convinced to try a DMT. With all MS drugs one needs to balance the risks with their individual case. Someone with a very aggressive MS may opt for HSCT, Lemtrada (Alemtuzumab), Ocrevus or Tysabri. All have more risks but are much more effective. Someone with a mild or benign MS may opt for Copaxone (or interferons), which are less effective but very safe. So many people here are conflating causation with correlation. Anecdotal reports of symptoms worsening after treatments are unfortunately often highly influenced by our own interpretations which is why you need a double blind study where the patient doesn't know, nor does the doctor, who is one which treatment. I know of a woman with MS who refuses all western treatments, who has claimed her MS to be "healed" but also has persistently declined and now can not walk, all the while thinking she is doing better than with meds. Truth is, she never tried medications, she almost certainly would have been better now physically if she had been on a DMT. But she has convinced herself she is well and healed despite all the objective indicators to the contrary of not being able to walk anymore etc. I've also had a good friend die of a very treatable cancer treatment for the same reason - the misguided belief that western medicine is evil. The reality is treating MS is hard, doing proper research to tease out effective treatments on a complex disease is hard, and DMTs don't offer anyone a guarantee, so people then sometimes gravitate to a guru who claims to know how to heal them. For some with benign MS this is fine, for the rest of us, this is dangerous.

I am currently not on a DMT for the first time in 14 years because I am unsure what one to use. I was on Copaxone for 5 years and after my MRI's and body showed that it was no longer effective switched to the beta-interferon for 6 years. I found it very difficult to lose 3 days a week due to side effects but I persisted until the body ache were worse than the MS. I tried Aubagio (2017, 8 months) though it is counter-indicated in a small percentage of menopausal females - I was one. Now, I have no DMT. Appointment with Doc in March.
I noticed that HRT has a positive effect on my MS, as long as the dosage is very low. I am eagerly awaiting the release of Mithra's E4 Esterol based HRT that is showing positive effects with menopausal women. I am excited that finally, we are working with the body's hormone system rather than modifying T-cell activity (or however the beta-interferons work).
DMT's do work, and I am always surprised when I meet someone who is choosing not to use the meds. I was diagnosed in 2004 and credit DMT's with the fact that I only need a mobility aid (walking sticks for balance and energy saving) when walking the dogs or shopping. I acknowledge that the meds are like using a bazooka to kill a mouse, but I balance their negative effects with a healthy diet, exercise, personal coaching, and happiness. I am changing Dr.'s because I am in Canada and my Dr. had a problem with the fact that I use marijuana rather than meds to manage my spasms and anxiety. New Dr. is okay with my marijuana use.

I have MS and need to take to someone. I am 65 and not on any medicine.

Of course I don't use a DMT. They are all too dang expensive. The American health care system decided that MS patients don't matter unless they have money. I was diagnosed at 20. I have had MS for 17 years. I work in health care. I see the reasons that health care plans deny meds (they should be sued). If you have a relapse on a med, even if it is working, health plans say no more. Apparently health insurance companies think treatment means cure. There is just too much to unpack here without seeming disjointed. I just know that American's and the people they elect do not care about sick or disabled people at all. They want you to die. If you take help from the government, you are a thief stealing their hard earned tax dollars. If you want help from the pharmaceutical companies, you have to beg, you have to plead. That is awful for the mental health of a population that already disproportionately suffers from depression and successfully commits suicide (almost) more than any other cohort in America. Welcome to America. If you are poor (even if you work full time) and you get sick, the best thing you can do is kill yourself, at least that is the lesson learned from being denied access to health care for the past 17 years.

I have been diagnosed with MS due to lesions on my MRI scans, bands in my spinal fluid, and an active lesion during my last MRI. I do not have any physical MS symptoms present. The initial lesions were found incidentally during a CT scan in ER. Could maybe recall having dizziness a lot in my 30's, but that is about it. So I am hesitant to start taking something. I know I should be proactive for the future, but the side effects of the drugs scare me.

I am surprised that no one has pointed out that this site is sponsored by (and running multiple ads from) a pharmeceutical company that is selling a highly expensive DMT. There is zero chance of an unbiased opinion. How much are they paying you, Ed? I don't imagine this comment will last long, if posted at all. Probably why I have seen this expressed above.

I was first doing self administered shots, they put me down on the couch every other weekend with flu like symptoms. Then moved to a daily pill, but got a lot of nauseating migraines, sickly in the summer heat...just never felt good. I felt better before I was diagnosed with MS, Optic Nuritis is what took me to the dr to begin with. After I was put on medication, it was all down hill from there. I was all of the sudden no longer living a normal life. After 5 years, I have decided to stop taking medications. As of today...there is no cure, there really isn't anything that will slow down the disease. To my knowledge all the meds do is help fight symptoms....which is great...but if everyday is a challenge because of the medication...then i choose to take my chances. Just my thoughts....not saying anyone is right or wrong for what they are doing for their MS.....all we can do is what we feel is best for us

Being this far down the page means it's unlikely any will ready this, but I have to say it. I've been on 5 different DMTs (Betaseron, Copaxone, Acthar, Tysabri, Ocrevus) as well as lots of other experiments (ie Clemstine). The Copaxone was well tolerated when I was younger but it is questionable if it actually helped much. Did it for 5 years. Acthar seems to do nothing. Betaseron was stopped due to liver issues. Tysabri and Ocrevus were stopped because they launched my disability forward to the point I could not walk when I was completely ambulatory before. My doctor thinks like you that I am "avoiding" the DMT, but you have to tell me how with only a statistical benefit that makes you feel like crap and launches you farther in progression is worth it. You can understand why people choose not to be on a DMT after several make them worse only to slow it down (if at all). In addition, Gelenya and Mayzent, what the Dr is pushing now, have statistical evidence that going off the drug will worsen your progress.

How about we stop getting excited about these band-aid solutions. Not a single one isn't a risk of getting worse, and it's UNFAIR to say that choosing not to do them is a gamblers mindset. The Drs are gambling too, just not with their own money. As long as all of us continue to give BILLIONS to drug companies why would they find something better?

25-years ago I was told "there will probably be a cure for this in 20-years". Who's the one who is gambling?

Drs should never push medications. If a patient is ready and there is convincing evidence, they will do it. There is very little avoidance here, just band-aid solutions of which some will kill you and you're going to get worse anyway.

I've had MS for 13 years, I'm 27 now. It was a hard decision to never start a DMT as many adults around me were afraid and believed the doctors knew best when and even before I was officially diagnosed, however I chose to hedge my future for many reasons. First I foresaw switching between medications, I foresaw sideffects, monetary concerns, psychological concerns, and I foresaw 60 years of a reduced immune system and countless virtually unknowable extraneous consequences therein. All of that plus only having what I considered inadequate available medications especially at the time with only 4. All of those theoretical consequences vs a very unpredictable disease course in a young intellectual male. So I understand why people are hesitant and I chose the wait and see approach. I have a weird sort of MS very young onset and very catastrophic initial episode (EDSS 8 to 8.5) which resolved just as suddenly as it occured leaving many "denign" lesions in it's wake. I've had a couple minor additional rellapses and many (15) new lesions through out the years but over all besides slightly unusual eye tracking, perhaps 25% slower muscle tick speed, and some memory and cognitive variability, without any marked disability, I do pretty well still. There may come a day when I choose to initiate a DMT but as of yet my initial analysis was adequate. I accepted even when I was only 14 that I have MS. Of course the MRI data and spinal tap bands were sufficient confirmation. It became a matter of making the right guess given the available data, I was too young for studies in adult males to be entirley reliable to me. I noticed there was a spectrum of severity in the literature, so I decided to resist taking anything until I was at least 18 to see how things progressed innitially and limit my parents involvement in my critical life decisions to remain very close with them. It was hard but I was meticulous in refuting medical errors such as comparing MRIs to the initial scan skipping a middle scan and presenting more severity than was factual as lesions are tricky things and MRIs are imperfect surveys of brain space. I was the brain bane of neurologists but at the end of the day I was more afraid of the medications aparently vast uncertainty and long term life consequences than I was of MS it's self. Today I hardly notice MS besides in subtle issues many of which I feel I suffered from even as a very young child before MS. This is how I preferred it to be. I have roughly 50 or perhaps over 60 more years to go so my opinion may change but for now 99.8% of ideal function seems like enough. I will reevaluate this as is nessisary at least every year and who knows perhaps a medication will become available that I really like, or my MS will be triggered signifficantly such that I am immediatly convinced of the already available newer drugs efficacy for my circumstance. It's hard to predict, but with out any functional progression in 13 years I become more confident in a mostly benign longterm prognosis. I'd say I have a 25% chance of functional disability in 10 years a 50% chance of disability in 20 years and a 75% chance of functional disability in 30 years or by the time I'm roughly 57. As I reach milestones without functional disability the future prognosis improves. When i was 14 after the innitial episode I would have said a 75% of functional dissability by 47 for instance. Of course thos is speculative and the inverse if I develope worsening dissability of any sort in that time is true. I think there is power in absolute belief as demonstrated in placebo and nocebo efficacy around 30%. I am fascinated in your feelings about other medications as well. I avoid vaccines though I did receive all childhood vaccines that were nessisary. Obviously a disease prevalence can be reduced or even eliminated by an effective vaccine however, a bunch of rich people avoiding vaccines in their lillywhite gated communities is not a significant concern of mine. They have instant hospital access and I'm not sure if the rest of society has the right to impose it's collective will over my internal body in order to reduce the chance of diseases spreading. If you are vaccinated then you should have nothing to worry about but in the case of the measles many people seem to fail to build or retain an effective response to the disease. Considering a less efficacious vaccine such as the yearly Influenza shot. Why would I risk an accidental immunological storm to produce an antibody when my actual risk of adaquet exposure is insignificant (less than 1% in a given year). Then what is the cumulative effect on me from ~50 such shots all throughout my life? Perhaps if I did receive that many shots then i could statistically assume I would avoid catching the flu between 2 and 6 times in my life time. 50 shots × the shot cost/sick days avoided and value/comfort retained-side effects = negligible or not signifficant enough in my opinion. Perhaps I could reduce the risk of MS complications if the flu increased the chance of an exacerbation but again that is a difficult argument as well since I'm not taking any immunosuppressive therapies my risk of infection in the first place is not increased as it is in other patients as the primary effect of many DMTs. I chose to go down this path and I'm sympathetic to others who followed me or who I followed who did not have and optimal result. Everyone is unique and the more time and information and knollege and wealth people gather can allow them greater freedom to choose the path less traveled somtimes even to their detriment. Thanks for your perspective Ed!

Newly diagnosed. Only one symptom of tingling in hands when moving neck. Did have bands in csf and lesion on spine. Was given 2 meds to choose from. Not interested in taking them. Wanting to know if anyone has been doing holistic supplements along with diet changes. Understand the concern Ed has and his thoughts on the meds, but I am just interested in holistic treatment. Thanks.

Thanks for sharing all of this, Kaiden. I'm a firm believer in hit-it-fast, hit-it-hard when it comes to MS and I agree with everything that you've written. This column is a bit old, so you may want to look through some of the others that I've written about DMTs, especially those detailing my experience with Lemtrada.

I hope the impact of your MS will continue to be minimal.

Ed

Medication harmed my quality of life with no guarantee that it would protect me.I was first diagnosed in 2016.No major setbacks for 3 years before medication started in 2019.Started on Interferons which made me sick with flu like symptoms, for 13 days, one day of normalcy and then the next fortnightly injection! Then put on Aubagio for last 18 months. While the last MRI reported no new lesions, I became chronically fatigued over time . Developed intolerable diarreah and decided to stop all meds. 26 days later and I have new energy and my passion for life has reawakened. The fatigue was NOT due to my MS(as I was told!) but directly related to my meds. I am on the Wahl diet now and prefer to take my chances. If I have a relapse I would rather be happy and in a wheelchair.. While I have a supportive neurologist, I will only re-evaluate DMT's should MS become more severe.

1990 (age 25)I had head concussion (white spot bruise brain)2005(age 40) in hospital numb face one side mri showed white spot (no big deal had them since 1990) doctor said M/S had spine taped all clear just a little cloudy 3 days in blood level alittle high. *was on big diet lost 100ibs with drinking alot diet ice gtea aspertame poisoning? (doctors would not go there,M/S only)on a treatment copaxone.always strong as a bull with alot of body injuries ,current 2021 insurance stop paying very big co-pay,I have had no other issues(had stroke2008) many operations,second guessing do I really have M/S?. 16 years no MRI;s or cat scans to check brain had MRA of spine in 2005 all clear.

My humble view is do whatever you can to stop disability. I approach MS holistically and with western medicine. On Copaxone for 16 years since diagnosis and no progression. Went off the drug because I thought my case was mild and just had a pretty big relapse. 51 years old now. The problem with MS is they truly do not understand the disease. I agree with Ed’s column and appreciate his insight but I also agree with the comments that if the side effects of the drug are making living miserable then why bother. I will always take the approach to keep trying to look for a therapy that is better and works because I cannot stand the way MS feels. It is an individual choice though.

I'm aware this post has been reshared on social media after a few years, so I'm a late commenter but I wanted to get my tuppence in nonetheless ? I live in Scotland where healthcare and prescriptions are free. When I had my 1st (and only) period of symptoms - that lead to diagnosis - I didn't have a lot of faith in my neuro or nurse who kept answering my medical questions with "I don't know" "don't worry about that" and kept pushing treatment. It's like I wasn't involved with the decision and as if it was something that was happening To me, not By me. I was due to start Tecfidera but could not swallow the pill I held in my hand. During this time I had read about OMS and made the decision to follow that lifestyle. I have been free from relapse and evidence of activity on my MRI since. Neurologist keeps no contact with me and was rather annoyed that I didn't go on a DMT. I was only 20 then and still so very young. I didn't want to sign up to a life of side effects and unhappiness when I had been given next to no helpful information at diagnosis.

I was on Betaseron for about a year, and quit again. For me, it's a combination of
- the treatment schemes (start with the not really effective medications like Betaseron)
- low statistical effectiveness of my treatment
- no monitoring of parameters like if I developed neutralizing antibodies against the medication
- my plan to take a permanent treatment (HSCT) anyway if MS progresses
- my openness for more unconventional approaches, e.g. I'm taking sodium propionate as a supplement
- side effects like injection site pain, tiredness, and psychological issues, Betaseron makes me feel more depressed and makes me more angry

So my plan is: I have quit the Betaseron, continue taking 1000mg of sodium propionate a day, and if MS comes back, I may try getting one of the more effective options. If this also is annoying or ineffective for me, I go for HSCT.

According to the various neurologists I’ve consulted with, I’ve had MS for over 30 years, thus disqualifying me from any efficacy whatsoever I might have benefitted from Copaxone. They put me on it anyway. I spent one year confined to a recliner. I quit the drug, quit the neuros and now, knowing what we know about TWENTY PERCENT of MS patients being MISdiagnosed, I doubt I have the thing at all. So, I’m disabled, can’t work don’t inject myself with useless agents and live an okay if boring and uneventful life.

I was diagnosed. A year and a half ago at the age of 61 with relapsing remitting MS and put on dimethylformamide. With no blood work for my lymphocyte count I trusted my Dr. big mistake.
I got a second opinion 3 months ago found out I had lymphopenia caused by the DMT and stopped the dimethylformamide immediately. Now my lymphocyte count is back up to .90 and my new Dr. wants to put me on ofatumumab a once a mouth injection. I have read up on ofatumumab and the side effects and stores of people getting shingles leading to skin infections then to having to take massive antibiotics causing C Diff. leaving them in a very bad situation with little recourse for antibiotics in the future.
Not sure if there is an enough benefit of going one more DMT. I got lucky one time will be so lucky this time. ?