27 Apr 2018



Today, it is Monday - Christmas Day. Last Monday, I joined lots of friends at the MS Therapy Centre Christmas lunch here in Swansea. I sat on the table with many of my old friends that I used to hyperbaric dive with. Two of the people on that table were CAPers. Well, to be exact, one of them is now an ex-CAPer. Her screen name here on this site is Moggie. She walks normally with no stick (cane). She proudly lifted her leg from under the table and showed me that she was wearing big red heels. Regardless of MS, I really don't know how women walk in those things anyway.


Glenn, I am glad that Moggie is now doing so well after her stint on CAP:  not so sure about her choice of footwear, though!  I have never, ever worn high heels, even when I could have done: flat but streamlined desert boots are more my thing!This post has made me remember two things: firstly I used to suffer from very cold legs and feet, which has gone now except from when the weather is very cold, which isn't very often! The second thing is that I was never invited for another neurological meeting, whether with a neurologist, physiotherapist or MS nurse after the first two, one paid for, the second with the NHS.  Not that I mind of course, and not that I would have gone, but it does rather seem as though the neurological community is trying to forget about both my existence and that of my awkward spouse....................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.


Well told, Supa. It is good to hear about Moggie. As for Sarah and I — we both have awkward spouses. Thank goodness. Sarah’s neurologist was infuriated by her recovery. His professional gravitas was more important to him than the recovery of his patient. (He turned to me, in a rage, and informed me that I knew nothing about neurology. I remarked that I had in fact studied neuropathology with David Oppenheimer in Oxford. He suddenly went rather quiet.) 

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Well, SG, this could be very funny, if your meeting weren’t so bloody tragic! Maybe more for the self-satisfied medical staff who trained for years, but know zilch ... or less!i always think it’s good to be awkward, unless you’re a ludicrous and self-important specialist, after a couple of long stretches on heart monitors, the kind they stick to your chest, the cardiologist, who agreed my BP was too low, looked at me and ... shrugged! Maybe he trained with your physio!but it’s too easy, and painful to cry. Thank God for your sense of humour and ability to laugh, but you must remember to make your next appointment to be patronised!i hope 2018 sees you walking in red, high heels too! It would guarantee some attentive NHS care! 

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hey Janet ...What makes you so certain that I wasn't walking around in red high heels back in 2017? I am a man of many talents.https://goo.gl/images/hpXD1rThese days, you can be whatever you want or self-identify as or be whatever you choose to be.https://gifs.alphacoders.com/gifs/view/3288Regarding Sarah's neurologist. He cared enough to be angered at her recovery. He cared enough to be angered by hard evidence that his dire predictions of Sarah's decline and probable demise were wrong. I meet people that really don't care at all. "Don't bother us and we won't bother you!" really couldn't be clearer in my mind. One would need to be pretty thick indeed to be under any misconceptions.I know and have seen many examples of people with MS being cognitively affected. I don't think that they know it. They are easy targets to hoodwink and patronise.I am dyslexic, as are both my sons. I have decades of experience in dealing with and witnessing the antics of Special Educational Needs teachers. I see similarity between those teachers and healthcare professionals tasked with dealing with MS patients. MS "is incurable" and therefore failure is the ultimate predicted outcome for any MS patient. The patients don't actually realise that they have already been written off. They are all loyally attending their appointments for the hoped-for cure. Waiting in line ... like people standing on a station platform waiting for a the train that ain't gonna come. The lines have been pulled up and taken for scrap. People are standing and the people are staring ... but nobody's noticed; the lines have been pulled up ... and yet nobody's twigged. Well, I think that the staff that are paid to be there have twigged. They play the game. They go through the motions. You can quite understand the sheer disbelief when a train does actually pull up.The likes of Sarha, Moggie & MacK and all those on that train to good health have ever reason to be laughing ... both with joy and at those that predicted only decline.SmileG.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Hey SG,i’m catching up ... slowly! This pulse is hard, so I needed a lift ... maybe 3 or 4 inches, red patent!but, you’re right, Sarah’s so called medical team, responded, at least! It may be a crap response, but, it’s a response!i’ve said before, that my GP asked my neuro to send me to a neuro psychologist but, thankfullyhe demurred, he doesn’t believe my desire to get well is indicative of a disability! The MS fulfills that role! I’m lucky, he doesn’t see success lies with my death!Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro