MS Treatment Decisions Can Cause a ‘Gambler’s Dilemma’

Thank you for your interesting column. I do enjoy reading it. Unfortunately, there are not three roads to choose from for all types of MS.

interesting as I always assumed and assume I will get worse

Decisions are made from your insurance coverage. Really not the patients choice

Gamblers choice? If doctor would listen to me. Dexamethasone doc said I'm allergic.
First DMT Rebif then copaxone .. I was told "I'm 'unfriendly' to these drugs" one year hold as I was told to hold treatment until I get mental health treatment along with the new drug he would offer next visit. Doc retires because i called him out. He ignored my prior medical history ... Asthma and prior problems with severe life threatening steroid withdrawl. 2nd I'm a former RN ... When a patient reports medication previously taken caused severe mood disruption ... Including severe depression with sucide tendencies ... I told him I have been looking for medical help for 20 or more years ... I have been here before. Doctors telling me this drug will help ... And it does the opposite. Causes more disability.
He retires and I am assigned a nurse practitioner. He talked me into a new MRI WITH CONTRAST Gadolinium. Each mri with contrast .... I have issues after. Clody thinking burning body sensations not able to eat and losing weight drastically. 5'8" 110... I'm used to a little more curve .. 150 is my desired weight.
Next offered... Zinbryta ... Told by the nurse practitioner "the elephant gun to knock out the progressive MS.
Zinbryta ... Once a month injection ... Sounded easy ... The warnings were scary but ... hey... They said it was SAFE. The drug company paying thw 8000 bill ok.
5 months into trreatment I was scheduled to see the nurologist. Never met him before. He told me to hold the drug and we will check in a month. My personal life fell apart ... Letter to vacate property that our trailer was on... 45 days to move. Ending a new drug that caused severe mobility balance AND COGNITIVE problems.
Moved to another state ... maybe we can afford living again. No work going on 5 yyears no money ... No savings.
In new home. Maybe I CAN CONTINUE TREATMENT.
NOPE
SSA DISABILITY AWrd and health insurance tied up between states ... All a computer digital nightmare.
Zinbryta pulled from World market.
It was killing people. Encephalitis?
So I ask. WHY
DO I HAVE TO KNOW MORE THAT THE DOCTORS?
Becauze that is what nurses did. Advocate for the parient.
Trust has been blown so many times wirh the medical scientific community. I'm all for a cure. Just quit making me a test monkey for big pharma and greed.
Retired doctor he ignored me the patient and when hubby advocated on my behalf ... The professionals DID NOT LISTEN.
I'm told it is all my fault.
When money is the bottom line ... Kick backs to the docs for selling the latest cure.
And the drug companies have all the rehetoric to cover their ass. I'm left paying for the mistrestment afterpaying for all the support drugs... Drugs needed to live life while in treatment. I paid out of my pocket.
Therefore, with money and with nearly paying with my life.
I took the gamble. I LOST
They won.
When the conscious effort become deadly.
I'm out of the drug game. I did it there way.
There way is wrong.
I'll gamble that God Almighty created our body to hear. Words. Frequencies. Light n sound vibration. Neq technology the military want to have for its use.
I'll believe in God's miracles before I trust mans bad medicine. The system is broken and flawed. The gambler pays with their life.
The scientists.doctorz.and all involed are free and clear to live their life comfortable... Never knowing what they just destroyed in a human being.
They have they money and lawyers.
They always have the upper hand.
STILL WANT TO GAMBLE?
ITS YOUR CHOICE
EDUCATE YOURSELF

although the primary gamble is choicing the right drug but the ridiculously over priced drugs are equally a major part of
this gambling process!

MSERS going bankrupt to
ani-up for this gamble that they hope to win is so unfair and risky

this article doesn’t even mention the cost factor of this shameless gambling system

For me the gamble is taking the stronger drug and hoping not to get PML or cancer.

does anybody know anything about Mavenclad, recently added to the pbs (pharmaceutical benefits scheme ) in Australia (low cost )

If I didn't have insurance my one med for a month would be over 7, 000

Another gamble is whether to get HSCT to try to cure MS. There are some pretty big potential side effects. At least one doctor is saying it should be a first line therapy.

Why was the annual fee for Gilenya 63,000 in 2013 and 98,000 in 2018?

Ed,

Thank you for your informed and thoughtful article.

I have dealt with many of these issues over the last 17 years, as well I have experience from multiple perspectives concerning this issue--I've worked as a volunteer in a university stem cell lab, and done extensive research on MS drugs and the labs that produce them.

I wish I had the foresight and courage to be much more aggressive with my treatment in the beginning. I'm sorry to hear about bad experiences with doctors--I had some too, and they are an unfortunate reality. Just have to do a lot of homework and keep reaching out until you find a good or great one. Also, I apologize if I burst anyone's bubble... but there aren't any proven 'natural' ways of lessening or curing MS, period. They are all anecdotal--every single one--and things like Terry Wahls diet for example, just end up confusing the issue even more. Unfortunately it is a gamble of sorts, as there are no tests available yet to predict which drugs will work best, let alone what course the MS will take. It is a huge gamble to hope that multiple sclerosis will take a benign course. If genetic mutations were such that MS was allowed to develop in the first place, the physiological lottery is already really stacked against you. Neurodegenerative conditions don't respond to willpower. They are multifactorial and multi-systemic, so they are nearly impossible to control. Something people don't talk about is that there literally is no cure for MS--it is a forever disease, just with some people without symptoms for long periods. I really wish that was everyone. As far as any greed and purposeful holding back of cures, that just isn't so. Though yes some greed per se, and competitive pricing, does harm groups of patients, there are ways around it. A good first step is to contact the agencies and societies (like the NMSS and MSAA) for assistance and recommendations.

I have ppms with one year left before Medicare kicks in. Lucky still under wife's insurance for now. Anyone with history and comment for Medicare paying ? Thanks

On the chance that someone reading this column has just recently been diagnosed and is trying to decide on a course of treatment, I wanted to share my personal experience.

I am an “outlier” of sorts with this illness. I was diagnosed in June of 2012 (after MRIs of the brain, spine and thoracic were performed), after I suffered numbness in my toes that slowly over the course of 2 months extended up both my legs to my waist. But my first symptom was exactly 10 years earlier when I was diagnosed with Optic Neuritis in my left eye — a sudden partial loss of vision — that cleared up on its own within 9 or 10 days. In the intervening 10 years between 2002 and 2012, I experienced symptoms of extreme fatigue as well as incidents where I fell and injured myself. But I had no idea that either of these symptoms was related to Multiple Sclerosis, or that my previous bout of Optic Neuritis was often associated with the first telling sign of MS.

I read all about the treatments for MS and learned of their side effects and made an informed decision to pass on all of them. Why? Two reasons. First, I have very weak bones and muscles and knew that any of these treatments were likely to impact me in a negative way in terms of my physical strength. Second, my father had been diagnosed several years earlier with Pancreatic Cancer and in the 6 months he lived through that diagnosis, until his death, I watched him deteriorate and lose his dignity as he tried experimental treatments that might give him some more time. In other words, the treatments made other things about his health worse. Now of course, as debilitating as Multiple Sclerosis can become, it cannot really compare to the quite deadly prognosis of Pancreatic Cancer, for which there is still no cure or effective treatment to stave off death. But that is where my head was back in 2012 when I made my decision.

The author of this article would call me a “gambler.” I suppose that’s true. And I suppose I’m a very lucky one at that. I have not, in fact, experienced any further recurrences of MS since June 2012. Since diagnosis, I have only taken fairly large dosages of Vitamin D in order to up my incredibly low levels back in 2012 when first diagnosed. I also take the drug Lexapro (Escatalopram is the generic name) for general anxiety and depression, which I had been taking since 2008. This drug definitely has the effect on me of not feeling stressed in most situations. And since stress can be a leading contributor to recurrences of MS, I can’t help but think that Lexapro may have been helpful in that regard. And of course, increasing one’s levels of Vitamin D is essential to anyone with MS.

Despite being an “outlier” however, I am less fortunate on the weak bones front. I have advanced Osteoporosis for my age, I’ve developed Scoliosis on my spine. And interestingly enough, I recently learned from a Endcrinologist who specializes in Bone and Mineral, that the form of infusion treatment I received to (hopefully) reverse the numbness that extended up half my body back in 2012 — and which actually worked! — was the single largest contributor to advancing my Osteoporosis and reducing my spine by about 2 inches! There are trade-offs, you see, in everything.

Moreover, one of the more disabling aspects of Multiple Sclerosis — Fatigue — is present in me to the farthest extent possible, at least in my opinion. When I do go out, I look healthy and vital and alive. I just can’t stay out doing things for too long and once I get home, I’m in for at lest a day or two. And between the MS fatigue and my loss of inches in my spine from Osteoporosis and Scoliosis, I experience some difficulties with breathing at times. It might also be that “MS hug” I’ve read about but still can’t quite wrap my head around. I just know that I personally have met those with MS who experience more recurrences and yet, are healthier than me. And cancer runs on both sides of my family, so I may have bigger choices to make in the future on that front!

The reason I am sharing this with you all, but in particular, those who may be facing a decision at this time, is because ultimately, it’s important for you to listen to your own body (and family history) and decide what’s right for you. The neurologist meeting you for only the first or second time doesn’t know your body as well as you do. Trust your instincts. Read. Learn as much as you can. Don’t feel pressured by doctors or anyone else.

That said, I must honestly add this single caveat — even if my Endocrinologist had been around to warn me of the potential side effects of the treatment I was given to hopefully reverse my awful bout with numbness coursing through half my body, I nevertless would have gone forward with the treatment. As awful as my advanced Osteoporosis is and may become, I still could not have done nothing. I went from experiencing numbness in half my body to achieving a 99% recovery. Even to this day, more than 6 years later, only the tips of my toes are just a tad numb compared to any other parts of my body. I’m very lucky and I know it — and I count every day as a minor miracle. I hope all of you reading this will have a better 2019.

On the chance that someone reading this column has just recently been diagnosed and is trying to decide on a course of treatment, I wanted to share my personal experience.

I am an “outlier” of sorts with this illness. I was diagnosed in June of 2012 (after MRIs of the brain, spine and thoracic were performed), after I suffered numbness in my toes that slowly over the course of 2 months extended up both my legs to my waist. But my first symptom was exactly 10 years earlier when I was diagnosed with Optic Neuritis in my left eye — a sudden partial loss of vision — that cleared up on its own within 9 or 10 days. In the intervening 10 years between 2002 and 2012, I experienced symptoms of extreme fatigue as well as incidents where I fell and injured myself. But I had no idea that either of these symptoms was related to Multiple Sclerosis, or that my previous bout of Optic Neuritis was often associated with the first telling sign of MS.

I read all about the treatments for MS and learned of their side effects and made an informed decision to pass on all of them. Why? Two reasons. First, I have very weak bones and muscles and knew that any of these treatments were likely to impact me in a negative way in terms of my physical strength. Second, my father had been diagnosed several years earlier with Pancreatic Cancer and in the 6 months he lived through that diagnosis, until his death, I watched him deteriorate and lose his dignity as he tried experimental treatments that might give him some more time. In other words, the treatments made other things about his health worse. Now of course, I recognize that as debilitating as Multiple Sclerosis can become, it cannot really compare to the quite deadly prognosis of Pancreatic Cancer, for which there is still no cure or effective treatment to stave off death. But that is where my head was back in 2012 when I made my decision.

The author of this article would call me a “gambler.” I suppose that’s true. And I suppose I’m a very lucky one at that. I have not, in fact, experienced any further recurrences of MS since June 2012. Since diagnosis, I have only taken fairly large doses of Vitamin D in order to up my incredibly low levels back in 2012 when first diagnosed. I also take the drug Lexapro (Escatalopram is the generic name) for general anxiety and depression, which I had been taking since 2008. I never experienced any type of major anxiety, but this drug always helped me to just mildly take things down a notch in terms of any worries I might have in my head about anything. This drug definitely has the effect on me of not feeling stressed in most any situation. And since stress can be a leading contributor to recurrences of MS, I can’t help but think that Lexapro may have been helpful in that regard.

Despite being an “outlier” however, I am less fortunate on the weak bones front. I have advanced Osteoporosis for my age, I’ve developed Scoliosis in my spine. And interestingly enough, I recently learned from a Endcrinologist who specializes in Bone and Mineral, that the form of infusion treatment I received to (hopefully) reverse the numbness that extended up half my body back in 2012 — and which actually worked! — was the single largest contributor to advancing my Osteoporosis and reducing my spine by about 2 inches! There are trade-offs, you see, in everything.

Moreover, one of the more disabling aspects of Multiple Sclerosis — Fatigue — is present in me to the farthest extent possible, at least in my opinion. When I do go out, I look healthy and vital and alive. I just can’t stay out doing things for too long and once I get home, I’m in for at least a day or even two. And between the MS fatigue and my loss of inches in my spine from Osteoporosis and Scoliosis, I experience some difficulties with breathing at times. It might also be that “MS hug” I’ve read about but still can’t quite wrap my head around. I just know that despite not having the more serious aspects of MS, I personally have met those with MS who experience more recurrences and yet, are more active and healthier than me. And just as an aside, cancer runs on both sides of my family, so I may have bigger choices to make in the future on that front!

The reason I am sharing this with you all, but in particular, those who may be facing a decision at this time, is because ultimately, it’s important for you to listen to your own body (and family history) and decide what’s right for you. The neurologist meeting you for only the first or second time doesn’t know your body as well as you do. Trust your instincts. Read. Learn as much as you can. Don’t feel pressured by doctors or anyone else.

But even after all that said, I must honestly add this single caveat — even if my Endocrinologist had been around to warn me of the potential side effects of the infusion treatment I was given to hopefully reverse my awful bout with numbness coursing through half my body, I nevertheless would have gone forward with the treatment. As awful as my advanced Osteoporosis is and may become, I still couldn’t have just sat back and done nothing. I went from experiencing numbness in half my body to achieving a 99% recovery. Even to this day, more than 6 years later, only the tips of my toes are just a tad numb compared to any other parts of my body. I’m very lucky and I know it — and I count every day as a minor miracle. I hope all of you reading this will have a better 2019.