Last reply 5 months ago
Not on drugs by choice

I would like to reach out to others who have chosen not to take DMT. have you regretted this? And how long have you been diagnoised? I was diagnosed in 2007, chose not to start dmt and have been ok with this decision. After joining this group, i am realizing that i have had more ms issues then i thought. I still do not regret he desicion, but woukd like to connect to others if possible. Thanks.

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nutshell88
5 months ago

No
I didnt regret
I was daignosed in 2004
Just started taking Gilenya because ive been normal and still am
I started gilenya because they insisted specialy that i developed atrophy 2014
But still fine and having fun in my life hate the fact im taking it and always will


nutshell88
5 months ago

Its not a treatment something aint. right and corruption is playing a big role


jreberg74gmail
5 months ago

@nutshell88, i am Happy to hear your still enjoying life and i hope things continue that direction. Has your atrophy improved? Thanks for your reply.


nutshell88
5 months ago

@jreberg74gmail
In the last MRi no and according to the dr once it happens nothing could stop it getting worse and frankly, when i started treatment i noticed lil improvements but not quiet much because im still hating the fact how it all started and because im sure all these treatments are fir good to fill their pockets for good
I wish i was as smart as them
I get treated in two hospitals once is the national guards hospital and the other one is a specialist hospital
The first cant provide this treatment always according to them gilenya is an invesion in treatments history and its pricy its only available in soecialist hospital which is two hrs away meh
I have an evening job but still take disability t
Two allowences


nutshell88
5 months ago

And two health insurance


edmontonalberta
5 months ago

@jreberg74gmail

I am not sure what you mean by DMT’s. Are you referring to drugs recommended by the medical profession? Or healthy living food options?


jreberg74gmail
5 months ago

@edmontonalberta, the drugs. Looking to see how people are doing without them. I guess i was assuming they would then be watching what they ate and looking for alternative ways to address symtoms


simone2
5 months ago

Hi, I am not DMT’S or any drugs, I was diagnosed in 2011 I took coprazone for 6 months but it gave me terrible side effects so decided to not take any DMT’S, 7 years I’m not any worse but I do get more symtoms, I follow the best bet diet and when i do slightly come off the diet my symtoms do get worse,I get plentry of outdoor execise everyday I do feel much better after execise, I also take lots of supplements, magnesium really helps with spasms and I take cannabis for pain and to help me sleep at night.


edmontonalberta
5 months ago

@jreberg74gmail

Thanks for getting back to me… I am in a unique situation – had spine surgery a few years ago. When recuperation was not on schedule, I was sent for a spinal tap & an MRI. PPMS was the diagnosis.

The medical field has done nothing except collect their paychecks. I get to bumble along trying to figure out if MS or if spinal challenges are the cause of whatever affects me.

Not upset or anything; this is one of the joys of getting older. So I take my vitamin D every morning plus Omega 3-6-9 the days fish is not on the menu. Nothing else!

I have a great wife; very, very supportive. My first wife died 25 years ago from Scleroderma; a very nasty disease – watching her taught me that if one does not talk about the disease then people are more than comfortable being around.

Life is a journey & we all have the same destination. So I am just having as much fun as possible along the drive… 😉


jreberg74gmail
5 months ago

@nutshell88, I do not completly trust doctors either. I have had some that were very good and others who only interested in pushing meds. Have you tried physical therapy? Thank you for sharing your story.

@edmontonalberta, I am very sorry to hear about your first wife. Doctors can be very frustrating. Good luck and thank you for sharing.

@simone2, i have not tried the magnesium, that would be great if it mellowed my spasms. They r not bad, just annoying. Thank you for sharing.


nutshell88
5 months ago

@jreberg74gmail yes but not regularly


itasara
5 months ago

@jreberg74gmail I am on my 14th year with Copaxone as my DMT. I had no real clues that I had MS. I was 57 at the time and one day woke up with Transverse Myelitis. I knew right away what it was because 3 years earlier one of my children had the same symptom and was diagnosed with MS. My daughter is doing well and her doctor told her after 14 years on Avonex she could come off her MS med and be checked 2x/year with MRI. She is after 3 years doing extremely well. I tale a lot of dietary supplements and I follow a low carbohydrate lifestyle. I am now 70 and after next MRI I may come off my DMT. I have read that often MS is not likely to progress after 70 if it hasn’t progressed before and after being on medication for at least 12 years. What symptoms I have are often those of Old Age as well as MS, but I haven’t had any definite disabilities or typical MS “attacks” as some call then. I do a LOT of reading about MS and belong to a number of MS groups. and there is no one answer that fits all.


dominics
5 months ago

This idea that Doctors are interested in ‘pushing drugs’ is rather worrying.

On an intellectual level it flies in the face of the. Hippocratic oath.

Practically: as someone who spent quite some time working on the industry side, if only. The bad old days of the 70s are a distant memory. Reading the ABPI guidelines and the GMC guidelines and the multitude of more local ethics guidance all combined with the effect of NICE and the dominance of evidence based prescribing these days it is very hard to see the basis for those remarks.

99.99% of medics want to treat a patient with the best drugs available for that patient.

Choosing to refuse medication is the right of the patient. To justify that choice by suggesting that the intentions of medics are suspect is untrue and unneccessary. It is the right of the patient and it doesn’t require justification.

Assuming that a patient does have MS, the fact that they aren’t exhibiting measureable symptoms does not mean that the disease is inactive and causing no harm to them. The evidence suggests otherwise.


edmontonalberta
5 months ago

@dominics

“This idea that Doctors are interested in ‘pushing drugs’ is rather worrying.”

The challenge with your statement is threefold. First, I once dated a pharmaceutical representative for a drug company; I jokingly told people she was a drug dealer. The fact is her job was to meet with doctors & convince them to promote her drugs to patients – ahead of other options.

Second, my present wife was diagnosed with LUPUS almost 15 years ago. Her specialist recommended Prednisone; once my wife did her research she threw the prescription into the garbage. She then did her research into healthy food options & completely changed her daily diet. It took her specialist 3 years to figure out what was going on; the tests kept showing her improvement was better than that of those who took Prednisone.

Third, every body is different. Some people live the healthiest lives as my first wife did; Scleroderma killed her at the age of 32.

I have been smoking a pack of cigarettes daily for 47 years, smoked & ingested a lot of drugs (no needles) for about 40 years plus drank an average of 50 beer weekly for more than 45 years. Whenever doctors ask my alcohol & cigarette background – I tell them the truth. They just sit there staring trying to figure out why I am still alive…

To make a long story short, many doctors just throw drugs at patients hoping they will help. Sometimes the drugs work; sometimes they don’t… 😉


dominics
5 months ago

@edmontonalberta I was a drug rep for many years. Nothing in the MS space though. Blood pressure, Type 2 diabetes (NIDDM), respiratory and some vaccinations. In some fields there are many options, and the representatives (a fast diminishing breed in the UK) are highly regulated. If there are a choice of ACE Inhibitors then yes, all of the same class with different patients responding slightly differently to each. Medics are creatures of habit and are very very risk averse (rubbing out patients is not only a v poor outcome for the patient but reflects poorly on the Doc as well) so are habituated v easily. If you are an Enalapril person you are very unlikely to change unless someone points out to you that Perinodopril causes significantly less first dose hypotension – which is a great thing for patients – and that is what drug reps do.

I jokingly referred to myself as a drug pusher, though was never serious. In much the same way that calling a recreational drug user a junkie isn’t a serious assessment of their use.

The amount of formal and difficult education that even the crappest doctor has gone through before they can make so called Command Decisions is huge. A minimum of seven years of postgraduate study in the UK. I believe it can be more in North America.

Additionally, they are human like the rest of us. They are just as susceptible to failings and weaknesses as the rest of us. Pilots, judges, police-officers, child-welfare people, all manner of pastimes where their actions have a profound effect on others. Doctors and Commercial Pilots are in a minority of professions that mandate ongoing training. Everyone hits a level. Some are average and others brilliant.

Using single examples of anything to try and prove a point is flawed. My Granny is 102 and lives in BC. She was an avid consumer of Shaklee products most of her adult life. I daresay she wasted a ton of money on them. Nonetheless, saying that Shaklee has life extending properties because of the one example is false. Correlation does not equal causation.

The evidence for the efficacy of early intervention in treating MS is there, from large scale long term studies. The 102y old avid vitamin and supplements consumers or the committed smokers who seem to defy the ‘rules’ are what are referred to as outliers in a dataset. It is called – technically – post hoc propter ergo hoc – or colloquially saying that the rooster crowed and the sun came up therefore the rooster crowing must make the sun come up.

The concept of ‘throwing drugs at patients’ is highly improbable. If the doctors were asked their reasons you’d probably find that – these days – there is a strongly evidence based protocol that underpins their prescribing.

Best,

Dominic


stumbler
5 months ago

@dominics , thank you for your reasoned argument on this subject. 😊


birdboy
5 months ago

@dominics = Nail. On. Head.

Also, in relation to the general topic of this thread…

Unfortunately, we all have an unforgiving, degenerative neurological condition.

There are treatments which can, in some people, slow the progression of this hellish disease.

Although a personal choice, it seems madness in my eyes not to try everything possible to limit the damage caused by MS and use the best current scientific/medical evidence and drugs to do so.


jreberg74gmail
5 months ago

Well that was fun! My comment of SOME doctors “pushing drugs” comes from my own experience. some people have had the fortune to fall under the care of some wonderful caring people. some have not. I have been lucky enough to have a sampling of both due to moving around and have become quite jaded by the medical community. But that is my experience. There are to many unknowns regarding MS and the drugs. When I originally started asking questions, I was told, I would know if the drugs were working if I saw no increase in symptoms, the down side was , this drug could shut down the liver, this drug could cause sudden death……. Long story short, I started this thread to reach out to others who made the same decision and see what their thoughts were. I have not had anyone to talk to or discuss things with for years and once I found this site, it was like falling into a pot of informational gold. I have had more “son of bisket!! that WAS an MS episode” thoughts then ever before. I have been in asking about different things and they find nothing wrong, or mentioning them to the neurologist and they just ignore it. so I stopped mentioning things. In the interest of not turning this into a novel, I will end it here. Thank you all for your input. I do appreciate EVERYONES thoughts.


edmontonalberta
5 months ago

@dominics

Thank you for getting back to me; with a well reasoned response.

@jreberg74gmail asked for input; she now has some to think about. And as I mentioned, every body is different. We need to make decisions best for us that we are comfortable with.

Hope you have a great day…

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