Sunday, February 15, 2009

Fwd: [PatientsLikeMe] Come join your friend "trrish" on PatientsLikeMe


Come join me on PatientsLikeMe, a community of patients, caregivers, doctors, and other friends all sharing information to help make a difference in the lives of people with MS.

Want to see your treatments, symptoms, and quality of life over time instantly translated into helpful charts and timelines? Want to see what medications are being prescribed for other patients like you? Want to connect with other patients experiencing similar symptoms?

By joining me, you can do all of this. Share your experiences, find patients just like you, and learn from others.

Join me at PatientsLikeMe:

You can view my profile at:


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Do you really like PatientsLikeMe? What has been your experience so far?

trrish said...

here's what I like about it.

It provides some good tools for tracking things - treatments, dates, symptoms, disability scale levels. I think if more MS people used it, it could become a good place for discussions. It's interesting to see what other people are doing. I have yet to find a place on the web where i am comfortable having discussions about MS. So many forums have an agenda - pro-drugs, anti-drugs. I want a place with open-minded people who aren't so attached to their treatments that they think it is the way everyone else should go, too. MS is so individual there just isn't one way. So, i figure I could try and get more people over there. Days like today, when I am struggling, I tend to start seeking out the MS community. So I was over there today.

I am looking beyond Tysabri at the moment. Wondering what is next. I am wondering if it is actually doing me a disservice. It's been 19 months. I keep wondering if I should take a break. My neurologist doesn't think so. He is so paternalistic that I don't get to make my own decisions. I am going to see a woman this week who calls herself a holistic neurologist. I need some other opinions.



I had participated in the PLM forums, but stopped because of some bullying behavior. It can be beneficial, however.

A friend started a Yahoo Group not long ago and it is still very small. Maybe seven members so far. The group discusses nutrition and MS quite a bit. Big fans of Swank and Jelinek.

If you are interested, here is the subscription address:

The originator of the group is Rebecca. You might enjoy it.

trrish said...

i'm sorry you had that bad experience - I have read a little about that. Seems like it was contained to a particular period of time. I don't really participate in the discussion board, although I do email people who ask me questions and such.

I'll check out that yahoo group. i'm on the "best bet diet' yahoo group and they are a little conservative for me.