I also suspect that there are quite a few Neuros out there that are reluctant to change the label from RRMS to SPMS unless they absolutely have to.

Once you are secondary progressive, the current DMD's are no longer prescribed - and in a country like Australia, are no longer available on the PBS (Pharmaceutical Benefits Scheme which means that eligible users get them for around $35 per month - all Interferons, Tec, Gilenya and Tysabri included).

Even if you find a Neuro that will prescribe them (and I know a few people who would fit the criteria for SPMS - but are still using DMD's) then you would be paying full price.

Insurance companies would probably do all that they can to get out of paying too.

Just a thought.

My neuro (He's head of the MS Research and Treatment Unit of the province in which I live), reclassified my MS as SP a couple of years ago and said that according to research, the DMDs have limited value in the treatment or management of SPMS. According to him, management of SPMS at this point is pretty much focused on symptom control, primarily of inflammation and spasticity, so that those affected can maintain function and use for as long and as much as possible.

He also said that the future looks brighter for people who are younger and newly diagnosed with RRMS because of ongoing research into DMDs and other interventions which may serve to prevent progression. He said that other research is focused upon regeneration of the myelin in demyelinating diseases like MS, as well as reprograming the immune systems of those with all forms of auto-immune disorders.

The main obstacle to seeing these research projects through?
As always, its $$$$$$$$$$$.

From my perspective, it does not only seem so, but has strongly been hinted at by those in the medical profession that I have received care from, that they are more often than not, at a loss as to how to help me or others with SPMS manage symptoms.
In the last couple of years I have had more drugs offered to me on a "trial basis" than in the decades before. I even had my PCP say that he would really like me to try prednisone for the joint inflammation. This, after it was realized that the joint inflammation is from an infection and that he is fully aware that my liver is highly reactive to steroids and is contraindicated.

I share this because I think that it is vitally important for those who have any disorder to be careful about taking anyone's suggestions or recommendations with respect to treatment, without analysing for themselves, on how those recommendations might be potentially positive or negative for their own circumstances.
Keeping track of symptoms (symptom journal), as well as reactions to medications and treatment, over a long period of time, is essential for being able to do that effectively.

With love, Erika

Has anyone here even looked into the Dr Roy Swank diet? He was a FANTASTIC neuro and I wish he were still alive.

I am on that diet and I FIRMLY believe it benefits MS and Dr Roy Swank backs it up with PROOF in his study. It infuriates me that my neuro (on the day I was first diagnosed) never even BOTHERED to mention I might try looking into that and make serious changes in my diet... yet he had no problem pushing toxic drugs!!!

It is absurd how many disease are caused by the garbage people eat. I just read "The China Study" by Dr T Colin Campbell and "How to heart attack proof yourself" by Dr Caldwell Esselstyn.

Even Bill Clinton is a huge fan and is on this diet. People need to WAKE up and start CARING about what they are shoving into their mouths!! It disgust me how much heart disease and diabetes is costing this country. These 2 diseases are preventable with HEALTHY DIET!!!!!

Lilly, please see Mariel's post #49 to you...:)

http://neurotalk.psychcentral.com/post1064409-49.html