Anyone chosen to not take MS medications???

[Jvmepm]

Hi! My name is Priscilla, I'm brand new here! I'm 24 almost 25 and diagnosed at 23. I have chosen to not be on medication right now.. I would love to hear from anyone that also isnt taking meds.. and what alternatives are u doing.. or reasons for not?? ☺ thanks!

[WAshingtongirl]

Hi, jvmepm, My first MS symptoms started 25 years ago. It took 9 years to be diagnosed. I started on Avonex 2 years after that because I felt (at the time) that they couldn't convince me that the remissions would have happened regardless of whether or not I was on Avonex because I was RRMS. So why take the shots and the related side effects if I may have gone into remission anyway? I had little problems or side effects, but I was taken off Avonex a few months later when the head of neurology undiagnosed me. I was still treated as though I had MS with the exception of the Avonex. I was later 'rediagnosed' with MS at an MS Center and told I'd had it since 1991. I am now SPMS, and my neuro is considering a couple of drugs, but I haven't been on anything (except Solumedrol and other symptom treatment) since the Avonex. From what I know of the MS drugs today, I think I'd have pushed harder years ago to be put back on Avonex or another drug. I am doing well (walking with AFOs/crutches, have cognitive and bladder/bowel issues) after all these years, but wonder if I'd be faring even better had I been on an MS drug. You are young, and diagnosed at such a young age. I was 33 when my symptoms first started. Thinking of you as you consider your options.

[ep63]

Hi, I am new, kind of . Is the first time that I'm getting into communicating with others here, but your question is really important. First your are too young please ask about alternatives with your Dr. If you already did, ok. My name is Evelyn I am 53 , I was diagnose 14 years ago , I start using Betaseron, and then change to Copaxone for couple of years. after doing the daily injections treatment for a while I got tired of injecting myself and 5 years in it I quit..I wish you the best, I am OK. Regular stuff affect me like the heat ,really make me sick,(air conditioner on high all the time I mean low temps like 68 degrees Fahrenheit( Then the electric bill is the one that kill me ) Stressful situations can make you sick, so kick out depressive or stupid people from your life, Please don't get married too young, that can also make a lot of people sick, sorry I am a mom I can't help it) I was kidding. Bye

[TrikeMan]

I'm not taking meds, opting for diet and exercise/activity management. My motivation is mostly economic, I spent a good wad of cash getting diagnosed but I have no spare money left, Now living on a very modest fixed income.

I made a choice going forward to EITHER pay for my cost-share of MS drugs and diagnostic testing; OR pay for the mortgage, utilities, etc. I could not afford to do both. I chose keeping a roof over my head.

Food I was paying for anyway. I made some changes in what I eat, I make food my medicine.

My life situation is somewhat different from you, I am a man with late-life RRMS. 60 years old now, diagnosed 2012-2014. It is easier for an old guy like me to roll the dice with medical care than for a young person like yourself, in that I have a lot less time to live where I have to deal with the symptoms and consequences of my choices.

I will say that MS management is a whole lot easier the deeper your pockets are. Maybe you are fortunate and have a trust fund to tap, or have somebody else in your life willing and able to pay for what you cannot!

[itasara in reply to TrikeMan]

Have you looked into getting help from the drug companies? They are good at paying often totally for the medication if you cannot afford it. I don't think there is enough known yet about MS, but what I keep reading is that the early one gets on medications the better. It is a matter of taking the risk of using it or not using it. My daughter was on Avonex for 13 years and now her neurologist says she is doing wll and took her off it. I have been on Copaxone 11 years. Don't know if my neurologist would ever take me off it, but who knows? We are both doing very well after all these years, but that doesn't mean the MS won't progress.

[kholland in reply to TrikeMan]

I have had RRMS for 26 years. At first I didn't go on medication. Then a couple of years later I went on Avonex. It worked for 2 1/2 years, then I started having relapses again, just like I wasn't taking anything. I think I took Avonex for about 7 years. Finally my neurologist took me off of it. I went on disability and couldn't see my regular doctor. They sent me to another neurologist and he put me on Copaxone and I have not had a relapse since. It has been 14 years and I have been relapse free.

[erash]

I took meds for < 2 yrs. had tolerable side effects but discussed with my neuro and he agreed I could stop them. MRIs have remained stable, no new lesions X 8 yrs but I have developed SPMS and I do wonder if continuing meds might have delayed that.

[JillLS]

Priscilla- I understand your mindset. Diagnosed 24 years ago. Decided not to take meds. Totally revamped my diet, did research on supplements (vitamins etc), did yoga then cardio, weights. Did not go back to doc until 7 yrs later bc another optic neuritis (same as 1st time.) Went to new doc. Showed me the MRI with tons of lesions. Scared me, convinced me to do meds and I went in beta seron. Continued to do everything else, too. Love my doc now. Very respectful of my choices and I get it why I'm taking meds- to keep things at bay. Still have tons of lesions and am pretty stable. Work full time, had a baby now 7yrs old. Only hospital stay post-partum bc new symptoms. Resolved in a couple of weeks with steroids. Then ok again. Couple of years later 2 new lesions. So now doing tysabri. And still pretty ok. Do what's best for you and consider the idea that meds can really slow things down. Take care of your body, clean up your diet (limt/remove processed junk), exercise exercise exercise- you can keep your body healthy! And I would take meds too-

[gelod112]

Hi all, good responses to questions re: taking MS meds with side effects vs alternatives. I was diagnosed 2007 with classic MS MRI lesions, dozens. I had an organ transplant 2002 and need anti-rejection drugs rest of life. One of these meds is CellCept 500 mg (6 pills per day). My neurologist (specialist in MS) said he has seen this use in other patients (one also an MD) and exacerbations are less frequent. Was on Copazone, but as I am also diabetic and on insulin, the shots were too painful and too expensive, so he OK'd the high doses of CellCept that I needed anyway! You may want to ask your neurologist if he has ever approached this kind of treatment. Btw, I am 60, my prayers to you.

[Bettyolm]

I was diagnosed at 65 with RRMS...quickly re- diagnosed with SPMS as my symptoms did NOT go away. I have never taken meds since there ARE none for SPMS. (I am 73 now.) Immediately tho, I chose not to take meds. My symptoms are slowly getting worse but I can deal with it. I use a cane and a walker. My right side is affected. I tried the Bioness...can't take the electrical stimulation. If anyone wants to buy mine I'll sell it. Still works great. I paid $6200. No insurance help. Will sell for $3000.

[JRootes]

I would suggest you get on a medication to slow the progression of m.s., I was undiagnosed for fifteen years and wish I could have had the chance to limit my disability sooner.

[sdgriffin763]

My cousin and I were diagnosed about the same time. I have been on Rebif for years and lead a very active life. My cousin on the other hand self medicated. She had been chair bound the last 8 years, then house bound. Unfortunately she passed away 18 months ago. Really unfortunate for her family. I am 63 and plan to be around awhile. 😊

[Elle61]

hi Priscilla, I was diagnosed when I was your age,now 37 years later I am still walking with my rollator. I took all the injectable drugs at one time or another for 15 or so years , I could walk on my own back then. They didn't work for me at all because now use the walker. I stopped 6 years ago and I feel a bit better,I know longer stress about giving myself a shot and I think depression + anxiety are a lot less.

Now I take Ampyra for foot drop , Baclofen for leg cramps, vicoden at bedtime for stinging pain. Now I eat as much organic as I can afford...no soda, corn syrup or aspartame( low calorie sweetener), also I try to stay active even if it is exercising at home.

Good luck.

[RobertCalifornia]

Exercise, stretching, diet. Taking Vitamin D3, Enzyme Co-Q10, Vitamin B12. I am waiting for Ocrelizumab to be approved. I need to get the old medicine out of my system. Have you talked to a neurologist who specializes in MS? I have been diagnosed with progressive MS. Three neurologists, all MS specialists from different parts of the country say I should be on something.

[Fancy1959]

Hello Jvmepn, it's Fancy1950. No two MS patients Journey along MS's rocky path is the same. So having said that I'll just give you my point of view. I was diagnosed four years ago at 53. A large lesion at my C3 vertebrae in my neck took me completely down. For a week I had all I could do to get up and walk to the bathroom. We didn't know for sure what was wrong and I was scared out of my mind. After testing and getting into a neurologist we figured out I had a MS. The neurologist estimated from the sheer number of white cotton ball lesions scattered throughout my brain that I had had MS for at least 8 to 10 years. The damage that was done before I was diagnosed can never be fixed. I wish I could have those years back and could have started therapy much sooner. I believe my disease would not be nearly as bad today if I had been able to do therapy quicker. I have already progressed to SPMS. My balances is in shreds. My hands are pretty much numb from the forearm down. They have very little tactile sensation and very little fine dexterity. I suffer from esophageal spasms due to my MS,. I have incontinence of the bladder and have intimacy issues all related to my MS. I am too young to feel like an old old lady. So I fight this monster tooth and nail butt I I'm afraid that the damage that has been done can never be repaired. That's a sick feeling. Especially when you might have been able to prevent the damage if you only knew this monster was silently chewing away at your nervous system. Speak to your doctor get his point of view. Good luck with your decision and please keep us informed. Remember together we are stronger!

[AngieRowe]

I too am like Fancy. I was undiagnosed for years. I was under neurologist care but he called it fibromyalgia. I knew it wasn't too many issues. I saw many doctors all missed it until this year. I'm now on meds. But I too wonder if earlier diagnosis would have slowed my walking, gait, urinary, and other conditions. I am 64 and my 86 year old mother is in much better shape than me.

[TracyBelle]

When I was diagnosed in 1999, taking a DMT wasn't optional. I was told that I would have to take shots the rest of my life. I thought it was just like being diabetic. I am so glad that I went on therapy immediately as I can still walk unassisted, and haven't gotten progressive MS after 20 years. The one thing that has been stressed over and over in the past 20 years is taking a DMT as SOON AS POSSIBLE. Even when you only have Clinically Isolated (not defined diagnosis). I can't believe your neurologist is not strongly encouraging you to start SOME kind of DMT. Maybe you need a Dr who is more familiar with MS and the need for EARLY treatment regardless of whether you feel sick yet. DMTs prevent further damage that occurs even though you might be feeling better.

Best of luck - Tracy