John Connor
Forum Replies Created
-
Hi Ed
I’ve got my own Lemtrada ann [of sorts!] coming up. In July my 5 year monthly monitoring period will be up – I will no longer have a visit from a phlebotomist, obvs taking a blood sample [& collecting a urine one!].
Know it did u good but actually made me more disabled then I was at the time. Wish hadn’t taken it but hey, who knew?
Still, don’t seem to have got any of the nasty side-effects. Except UTIs – from it.
Just chatted to my Neurologist and agrees thinks I’m now secondary progressive. Only thing he can at present offer is more chemo.
I’d rather not, thank u!
-
Hi All
Besides the drugs I take daily for TN: Oxcarbazepine [specifically for – according to Pain Consultant better molecule than Carbamazepine], Baclofen [originally prescribed for neuropathic arm but handily a second line drug for TN, The two drugs work in harmony], Gabapentin [again originally prescribed for neuropathic arm but handily a second line drug for TN, Now on the max dose], Fluoxetine [Prozac] [this one out of left field – my own discovery! Weirdly made the diff when the TN began to cut thru – has worked for months. You can read the embedded tale in this link. It also highlights Lidocaine Patches which can actually calm intense attack down!!!
Cheers John
-
Hi Timothy
Presume you’ve read this news report on this site:
‘Simple Sugar Molecule May Be Potential Myelin-repairing Therapy for MS‘
Know I’ve written about it in the forums and typically can’t find it. Be warned – lots of things work in mice but rarely wok in humans!
Still here in the UK it is generally available – think the body building crowd like it!
Take it myself – just in case one of these supplements actually works for us!
Have a look at Ursolic Acid if u’re in this mood.
Cheers John
-
Yup.
We are all on different journeys caused by the same thing,
Good col – worth reading.
Cheers john
-
Hi Jess,
You’re in luck, I do!
Besides being the Co-Moderator on this Forum, like Ed my fellow Co-Mod I’m also a Patient Columnist on the main site. I’ve written innumerable pieces about it:
The Mouth That Roared and Roared
Well, This Could Be the Last Time, I Don’t
Know!’
Sorry, This Is Not About New Year’s Resolutions. Get Over It
When u get thru this lot pls add to this post and I’ll do my best to help.
!
Sorry, This Is Not About New Year’s Resolutions. Get Over It!
-
To be honest I’ve never worried about it! If u do turn out to have MS the DMT’s [Disease Modifying Therapies u’ll be offered are far worse!!
As u know u can find all kinds of ‘evidence’ on the net but pls only accept peer reviewed scientific papers in your studies.
Cheers John
-
Hi Bill,
Ta for reading/replying.
This is the sort of thing I’ve got. Though mine is made by a company called Voyager.
I live in the UK but sure similar companies exist in Canada.
Cheers John
PS In my youth I hitched the entire Trans-Canadian highway & stayed a few days in Toronto. Actually I arrived driving a Corvette from Quebec City. It’s a long story……
-
-
Thanks both of u, Me to! And seem to remember it’s all manual forms -which I no longer can fill out!!!!!
-
Hi Paula
The report though about men also mentions how women are also affected – which I, ahem, mention in my precis above! But I get your point!
Cheers John
-
Rebif & Copaxone. Body rejected both.
Gilenya [Fingolimod] – loved but MS eventually broke thru!
Lemtrada. Awful experience: https://multiplesclerosisnewstoday.com/2017/05/26/ms-lemtrada-and-immobility-this-island-couch-series-part-i/
https://multiplesclerosisnewstoday.com/2017/06/02/ms-lemtrada-ii-my-right-foot-hopefully/
Ocrevus – which I also really liked but destroyed my immune system!!
https://multiplesclerosisnewstoday.com/columns/2019/12/11/stop-in-the-name-of-leukocytes/
Now on nothing. Waiting on experimental drug suggested by me Neurologist…..
….
-
Not so much switched as stopped. Was injecting Rebif then one day it just stopped me from walking! So didn’t take it & could walk again. Eventually put on Copaxone & same thing happened!
I figured I might as well walk whilst I still could!
Eventually put on Fingolimod which I loved.
-
I usually say, ‘Well, I have got MS!’. x
-
Hi Shorty
Thanks for playing.
Yes, Santa’s fatigue in my version would go to 111 in Aus!
We have egg hunts at Easter – seems u’ve created an Xmas poo one!!
Happy New Year Mate
-
Hi Vitalina,
As u may be aware I’m Mr. Negative about CBD oil however sure good ones can be sourced. As there is no active [the fun & indeed useful TCP part] they r all totally legal here in the UK!.
I recommend taking them with a hot cocoa!
Cheers John
-
Interesting article/results.
However as perhaps with everything else with MS it’s difficult to apply any test in this area! For a start the tests are subjective! And our fatigue itself is subjective! Yes the majority of us seem too feel it. I most certainly bloody well did and when I was still ambulant it was my biggest disability.
Still subjective tests on a subjective area has the whiff of the rabbit hole! Perhaps I can reach back to symbolic logic and wonder if we’re in the world of the petitio? The conclusion has been assumed in the premises!
I to use Modafinil & never found it helpful in dealing with physical fatigue! However it cut thru what is usually called MS fog – instead of stumbling about in a hazy Holmesian palace of the mind it cut right thru it – it still does! I remember struggling to do a very complex work thang that I was now drowning in – it had never been easy but MS was defeating me. Suddenly I could do it again!
Of course Covid has destroyed that job but the Modafinil still offers me clarity.
Still, I can only subjectively prove it!
How about I open with an ‘Off with their heads’ Queens’s Gambit?
-
Hi Cathy Sorry to hear this. We seem to have opposite effects granted by the magic wand of MS! Sure u’ve been thru this – any drugs u take exacerbating things? I had one that I took for a while & then suddenly did this! Also separately would suddenly just go with seconds of warning! This has just disappeared over recent years…. Sheesh!
-
I’ll do my best sir.
-
Hi John
I’m 63 & already feel like that!
But this one is being tested on humans & can be measured directly on us rather than mice!!
It maybe something.
Cheers John
-
Hi All
Since last posting on this thread in July 2019 I’ve had a volte face on CBD anything. It might help – it might not. It’s also pricey! Mind you I take a lot of things on the off chance they might work…
My main gripe is the fun part in Cannabis, THC, is the bit that calms spacisity. Taken at night I get good sleep and wake up in the morning without my right hand clasped into a fist like some bad Bruce Lee impersonator!
Cheers John
-
Good point. Must be why mine could beat me at chess when he was 6!
-
Ta Brad Luckily I’m just enough of a misanthrope to look on the bright side of missing gatherings that I otherwise would have had to go to!
-
Wrote this in a what letter I’d have written to myself if I’d known column. To save anyone plowing thru this hokey construct – here’s the relevant extract:
I’d tell my newly diagnosed self to grab a DMT as early as possible. Indeed I’d push for stem cell replacement therapy (comes with 1-2% risk of death mind). By the time I could have got it my MS had already progressed to where it would no longer work. It doesn’t fix you but it freezes you where you now are. MS is a progressive disease so grabbing what you can whilst you can is eminently preferable.