Say NO to drugs!?

[pip4al]

I am newly diagnosed (last month at age 44) with RRMS. I have always been very active, exercised daily and ate a healthy diet. I am having a hard time considering any of these meds for MS. I am sure I have had this disease for years and just pushed through. Am I wrong for not wanting to take it? Are you not taking meds and able to work it out with diet and exercise alone?

Thanks for the advice. I really do not want to lose my long blonde hair or kill my liver (Aubagio).
Tina

[1eye]

Say no all you want. You'll know when you're ready.

[pip4al]

Thank you. I need some sort of validation. Too many opinions on what others think I should do.

[ElliotB]

I will offer you another point of view. MS is a horrendous disease. I feel that it may be best to do everything possible to be on the offensive against the disease, including drugs. Even knowing that there is no conclusive evidence that the MS drugs work, if there is a chance that they do, in my opinion it is worth taking it.

Ultimately, you need to do what you feel is right for yourself.

[CureOrBust]

My largest increase in symptoms occurred while I was using Rebif. This was simply my personal experience.

[pip4al]

Are you still on mess?

[David1949]

I was 47 when I was dxed. I'm 66 now. I'm still getting around with a cane and a foot brace. Never took the drugs, but I have the PPMS variety and the drugs don't work for that. Anyway I'm glad I never took them. You might want to get a copy of the Multiple Sclerosis Diet Book. It's available at Amazon. http://www.amazon.com/gp/product/038523 ... oks&sr=1-1
Read it and make up your own mind.

But I agree with an earlier poster; do whatever works for you.

Good luck to you my friend.

[pip4al]

Thank you

[ElliotB]

Offering another point of view to David1949's reply, I strongly recommend you read this book on MS diet, which offers an approach to diet opposite to the one presented in the book he (nd all other MS diets) recommends:
http://www.amazon.com/The-Wahls-Protoc ... 107%2C160_


David, are trying Biotin?

[David1949]

Elliot I tried the Wahls diet for 6 months and it had no effect other than to make me much more appreciative of bread after I went off it. But again I have the primary progressive form of MS so maybe it just doesn't work for PPMS. Dr Swank said his diet didn't work for non-remitting (progressive) cases either. This is just my opinion but I think some of the treatments/ diets just put ms into a long term remission. But for PPMS there are no remissions, so it doesn't work.

I haven't tried Biotin. The doses used by Medday in their study of Biotin (MD1003) were much higher than used for other illnesses. So I'd like to be using that one while under the care of a doctor. I'm hoping that Medday soon puts it on the market for MS, and doesn't raise the price to an unreasonable level. Are you trying Biotin? If so have you had any measurable improvements?

[ElliotB]

Dr. Wahls is in the PPMS stage. If you read her story, you will see that she was in a wheelchair for a fair period of time and really wasn't doing very well. I have been following a similar diet to hers for 1 1/2 years and seem to be doing well with it.


"But for PPMS there are no remissions, so it doesn't work"

Don't tell Dr. Wahls and the others who have had successes that!

Frankly, 6 months is probably not long enough. Were you eating grass fed meats? I know in her book she refers to organic meats. But there is a huge difference between the two, and the protocol really calls for grass fed meats. Also, were you following the rest of her protocol with regards to the consumption of greens and were you exercising?

And yes, I am taking Biotin. I had been taking low doses of Biotin for about a year prior to the 'Medday' announcement and have been taking high doses since the announcement.

[David1949]

Dr. Wahls had secondary progressive MS. That starts off as RRMS and then transitions to SPMS. It may not be the same as PPMS.

[daverestonvirginia]

I was diagnosed at 45, I am 55 now. Right when I was diagnosed I had an uncle who died of MS at 56. Of course I decided right then I would try everything and just about anything to avoid his faith. So I started the best bet diet, copaxone, daily exercise, and taking multiple vitamins including vitamins. I believe it is the combination of all these things which have kept me healthy. I know everyone is different when it comes to MS, but I believe it is important even if we are feeling good not to let our guard down. I have never had any side effects from copaxone, but I am thinking of moving to one of the new oral meds depending on how their side effect profile looks like in a year or two. My uncle did not have any drugs to use and he smoked, but it is really great that our outlook today in general looks much better than just 20 or 30 years ago. I hope you will consider doing anything you decide might help you fight MS.

[1eye]

It ain't easy to decide whether to take drugs that might kill you, make you worse, do absolutely nothing, or make you better. Nobody is offering any guarantees.

It is easy to go with the current belief that the doctor knows best, but remember this disease even makes doctors argue among themselves. Many of the things we know best about it are common knowledge and common sense. It is an evil enemy, but we may be closer than we think to defeating it. Use Occam's razor.

[ElliotB]

David, you are correct, Dr. Wahls was SPMS, not PPMS as I had indicated above, thanks for correcting me. BUT her diet is geared at all chronic autoimmune conditions, not just those associated with MS. Her entire protocol is directed at maximizing the body's ability to fight any autoimmune disease.

"I tried the Wahls diet for 6 months and it had no effect"

Again, I strongly believe that 6 months is not a long enough time frame to know whether the diet/protocol is working for you. The body heals slowly.