Progressive MS treatment?

[pshrink]

No finger pointing, I promise!
I recently had a longish spell in hospital with pneumonia. In admission, in the emergency room, I was asked:
"If something happens, do you want to be resuscitated?"
This does sort of focus the mind.
Reading about the MedDay trial, has got a fair number of people getting their hands on pure (i.e. 100%) Biotin and treating themselves.
This cam be seem as not waiting for the FDA, or the EU, or any other regulatory organization to approve Biotin, but to do something for themselves.
So, if 0.1mg 3 times a day will do anything to help me walk again, or just reduce the fatigue, I am all for it.
So much so that I am currently tracking the first shipment.
G

[RingpOP]

I know the waiting game is horrible - but I try and keep myself busy by supporting others, advocating, etc.

It's okay to 'rattle the lids', but I like the focus of the rattling to be for advocating about ALL stages of MS, not just RRMS. Yes I have RRMS, but even my neuro states that "my MS is aggressive"

Bottom line is - even for those of us with RRMS - there is a likely change we will end up being SPMS, so I think that there shouldn't be focus on just what disease stage.

I've pointed this out when I attend conferences, meetings, etc. How all the focus is on RRMS patients in the MS community (pharma companies, etc.) but a majority of those people will eventually get SPMS, what then? It's a point that needs to be made very clearly.

I do love MSWorld's Founding President, Kathleen Wilson's short films she makes about her journey with progressive MS.
You can find those here:
https://vimeo.com/101676893
https://vimeo.com/102297094

Hope y'all are all having a good week
It's warming up here in Central Texas - with lots of humidity from all the rain we've been getting. I wish I could live in like Canada and/or Alaska for the Summer months! The heat is a killer for me.

xoxo

[dyin_myelin]

I know pshrink mentioned but there's a nice write up of both HSCT and biotin on wheelchair kamikaze's site:

http://www.wheelchairkamikaze.com/20...essive-ms.html

[poppydarling]

I've pointed this out when I attend conferences, meetings, etc. How all the focus is on RRMS patients in the MS community (pharma companies, etc.) but a majority of those people will eventually get SPMS, what then? It's a point that needs to be made very clearly.

Ashley, can't thank you enough for all of this information and links! You are absolutely right and I love how articulate you are (watched you in a recent conference video , can't remember the doc you were interviewing, ha) for the causes of early and later stage disease. We will all be there eventually, so this feeling of being abandoned when we arrive makes me angry.

Related to the OP, the brutal stark honesty of our situations can be hard to handle, especially if we are trying not to sink ourselves. But we do need each other. The fact that people keep coming back to these boards gives me hope!

[RingpOP]

dyin_myelin - love wheelchair kamikaze! We've communicated in the past about MS and such - and we both write for MultipleSclerosis.net.

poppy - Glad you watched the videos! I interviewed with Dr. Jack Burks - and then with Dr. Jack Burks & Dr. Samuel Hunter. I try to stay up-to-date on all things MS and such - so that I can share the information.

I also try and phrase the 'news' in what I like to call 'ENGLISH' cause the medical and scientific terms... can make my head spin, and many others as well.

I'm all for brutal honesty - and discussion, just no negativity to one another... because we are here for support. Even the volunteers, were members starting out. The mission at MSWorld is to end the isolation that MS causes - so I try to remind others of that.

Are we all going to agree on EVERYTHING? NO WAY! We're all different... not just with our MS, but in where we are from, our lives, etc. I am trying to be more 'active' on the boards now-a-days, because I really enjoy the discussions I've had in the past.

And just an FYI, since the Conference Coverage was brought up... if y'all ever want some 'questions' answered (general, not personal medical questions), you can e-mail them to QandA@msworld.org - and I will try to get them answered at the upcoming conference.

XOXO