5 Apr 2019
Author
Kiki
Title

NEWBIE- advice and experiences please! Protocol starting JAN 2019

Body

Hi all incl Sarah and David! I'm new to here. Just recently weeks ago I was diagnosed with intermittant relapsing MS. Seemingly it all started in 2006 with optic neuritis then 2011 with lower limbs tingly,/ numbness. I have been started on daily Copaxen injectitions. But with a severely disabled child Im struggling both physically and mentally. Please help with advice as to how where, who, how much etc to get started on Wheldon Way of treatment. I believe in going in for the underlying cause rather than just band aid stuff. Thank you! Kiki Bojanic

Comments

Hah Norman, with regards to MS, it was always thought to be an infection, dating as far back as about 1870 or so. The trouble was, the right pathogen was not yet discovered. Most people only have quite short memories so by the 1950s people had forgotten about the earlier thoughts about MS. 1950 was when Cpn was first discovered to be a pathogen, in Taiwan.

So eventually the same thing as happened with tuberculosis will probably happen with MS.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi all!

Just received my 2 copies of MRIs and radiologist reports. How do I post screenshots of reports on here for poss help to decode what it all means please? Too long to type up yet short enough as a picture. Will obviously cover up personal details. Could do with some help to understand better.

Kiki

To be honest Kiki, I don't know. I know how to post pictures because my websites are full of my paintings, but your MRIs are presumably negatives. My scans shown on the Catalyst programme which can be seen on the home page here, were done by being held up against a window in my studio, filmed by the Australian cameraman. The MRIs are all larger than A4, but what you received in the post might be quite different, because of the time between yours and mine being taken.

Is there a difference in either of the radiologist's reports? All I know about mine is that I had a third MRI last year but there were no new lesions after eighteen years.

No new lesions is what you want to be aiming for. You will never have a completely clear scan because the lesions are scars I have a scar on my left thumb which has been there since I nearly ripped it off thirty years ago.  It has faded over the years but is still visible.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

There's an "image" link in the top of the message editor on this site (well, a little piece of hieroglyphics, but when I hover over it the label "image" pops up).  It should be some sort of way of adding an image to your post; give it a try.

Kiki and Norman, I have messaged Pinky about this.

When I clicked on IMAGES it came up that I had posted something nearly three years ago.  Today I copied an image from my own website and placed it in IMAGES, but it still reckons that it was one I posted three years ago.  I will take it off later.

Now, I took it off straight away, but I tried putting the same irrelevant image in a new blog post, it worked and then I remembered that the image to be posted needed to be copied  from somewhere already online, so where was the image of our house which was in my last blog?  I'll have a think and wait to here from Pinky, but you should be able to put your image in your own blog.

I do know from my own website though that an image takes up an awful lot of space compared to text. My site is thousands of times bigger than David's for instance and so costs much more.  We did used to have many more images than we have now though.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Kiki, do you have an image in some format which I could either place in your blog or give to Pinky to do the same thing with?

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

That sounds like a very good idea, if you can bear to look: I couldn't at first because I was horrified at what had been going on inside my brain, when I had never even had a headache!

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.