Took 16 years to finally make a real change.

By 1faith

2 min read

At 41 and single, life was good. I had most things i really wanted, and a job made for me. I was productive, accepting, positive, and happy overall. Then, after 6 months of fatigue, walking, urinary, and thinking problems I knew not to ignore, I was diagnosed with MS, and everything about me changed.

What saved me was meeting, and starting life with my forever partner. Neither of us knew what our future was, but our present was the best. I had the best local MS neurologist, and blindly followed his care. Within 2 yrs I had no job, stopped driving, moved in with my partner, and my symptoms increased and worsened. We moved from our townhouse to a home without stairs, and I got a scooter to help when my cane wasn't enough help.

The next 13 years of care included 1yr of Betaseron, 8yrs of Avonex, 7 sessions of IV SoluMedrol, and many other drugs, even chemo. The only drug with any effect was Provigil, which excelled against my fatigue. My liver didn't like Avonex, and since it had no benefits, my Dr stopped it.

Timing was perfect as he wanted me to join a drug study for SPMS, and no DMDs were allowed. I said I didn't have SP, felt I had PPMS. He listed me as Chronic MS after one yr with MS, and he disagreed that it was PPMS.

For 16 years, my neuro insists I'm not PP, but Chronic MS. It is well known that most of the drugs he prescribed me are not effective for PPMS. I only hope I will experience no after effects due to these drugs in the future. I looked into my vitamin levels myself, and started D3, B12, Magnesium, and Fish Oil.

In 2/2013, I decided to seek health care from a functional nurse practitioner, and it has been a life changing improvement- defined causes of MS symptoms greatly improved, pain gone due to chiropractic treatments, decreased heavy metals and toxins, improved gut flora, and stopped 1 drug. I now use natural supplements, diet, and exercise. I feel almost "pre-MS". Just these important areas of health are not included in many Dr's routine practices.

In 8/2013 I joined a PPMS drug study at NIH. In 9/2013 the NIH officially diagnosed me with PPMS, as I've suspected for 15 years. That has confirmed I am on the right path for my health. My future is brighter since I became more informed. Advocate for your best health by learning to not take health for granted! There is much more to good health, than just doctors and drugs!!

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sonya Member
Hello Faith, Thanks for your article, & giving me some food for thought. I was diagnosed in early 2007, with RRMS. I have been on Avonex ever since & it seems to be doing its job. I have other health issues, degenerative disc disease of the spine & arthritis of the hips & spine, which prevent me from being as active as I would like. I take the D-3 you spoke of, would you mind telling me what the other supplements are for. My neuro is not big on the supplements, but I want to do anything I can to help myself, without the aid of another prescription drug. I wish you the best on this journey. Sounds as though you have finally found the right path! Sonya
1. 1faith Member
 Hi Sonya, I'm glad you're interested, but you should first have blood results to help show what your needs are. I read lots online and had to ask my x dr to even look there. Everyone is different, and there are many opinions on treatment approaches. RR vs PPMS, general health, and medications are factors included for even adding natural supplements. You have to also be aware of the different supplements out there, since some can cause harm. No regulation and games make that a more questionable market for consumers. I highly recommend a Functional or Holistic provider to work with you. They look for a source of conditions, instead of just treating its symptoms. I know that vitamins Bs and D, magnesium and other minerals, omega 3 fatty acids, antioxidants are all too common deficits in general, and are increasingly found to be associated with MS. Those providers routinely focus on all the areas I mentioned, and more, as well as assure your meds fit within your best care. Traditional MDs don't focus in those directions usually. I don't criticize, only acknowledge a different philosophy. I am sorry I don't help, beyond some questions to ask. Your health warrants more than a lay person's opinion like mine. I sincerely hope you find your better health path.
sonya Member
Faith, Thanks for your input & for the reply to my questions. Guess I'll do some research & see where that leads me. I know a few people who have RRMS, & they are taking dozens of supplements, which I'm not certain I agree with. I do appreciate your time, & I pray you have continued good results.
1. 1faith Member
 I'm all for most adults to take supplements, Sonya, and especially for pwMS. I don't know if the forms of MS make a difference in regard to vitamins, etc. I'm cautious for the above reasons, as the body reacts to all intake in some fashion. The more I read, the more complex the subject became. It makes for interesting reading. Blood work gives you basic info to start with. I use D3 in a high quality liquid taken in daily drops. I did well with gel tabs before, but they also contain more ingredients. As some others do, I feel the RDA is set too low for adults. A large amount of evidence supports the safety of a higher level. I also follow up periodically with blood work to monitor my levels.