JaneK's blog

Rash etc.

Last Friday i finished my ninth pulse. I felt fairly dreadful and struggled through a day for a concert  we had booked ages ago.Saeurday i took doxyi and Roxi, as usual. Last month my husband had a preview, but I was tooo tired and bad on my feet to do anything but sit at a table, with friends. He had another preview, this week, but, although not great, I was so much better. Since then, I’ve developed itchy cheek-bones, but, reading through here, I’m not the first. So far, nothing unsightly has developed , but I’m not, at all, concerned. I’ve been struggling this year, but am feeling better. I guess i have, always, to remember that the CAPi is not plain sailing.

Faux relapse?

Hello everyone,

before Christmas i felt good, really on the mend, although I knew i had a way to go before my MSi came under control,  but, since the new year, i seem much worse, my sight is worse, my fatigue is bad , as is my hypotension - i’m horribly light- headed - and my mobility and balance are dreadful.

Still uti? Porphyria? Imagination?

I’m so sorry for banging on with the same subject!

i thought i had a utii, tests said no! I took the poor man’s porphyrin test‘, it also said no, although the urine was deep yellow, almost golden, but i had been drinking coffee!  Usually my urine is pretty colourless, although sometimes cloudy! My fatigue and weakness is severe, although, it had seemed under control! I really am at my wit’s end,


Fall down or sit down

After my last pulse i seemed to develop a bad utii. I seemed to be responding very well to the capi whenj, the day i finished the Metroi,  i became, suddenly and totally, exhausted. Stupidly, i hadn’t taken my  probiotics, those 5 days.  I must have looked dreadful because i  went to an event where a lot of people were trying to make me sit down, which i had to do anyway, sit down or fall down ... no choice, really! The last time i felt dreadful, i increased my B12,hugely! I took D Mannose and gave up all refined sugars. i’ve sent a sample to the GP, but haven’t heard back, so it must be clear! What on earth could mimic cystitis or utii?


How did you feel?

pulse 7 is, by far, the hardest yet! i haven’t measured my BP, but i feel very faint and tired, my breathing is not easy and my shoulders ache. If i were a quitter i’d stop, but i’m not. I know Sarah described her fourth as the worst and i know we’re all different, but could anyone tell me their worst?

Pulse 7

Day1 of pulse 7 and, so far,  i can feel the abxi! Which, i guess, is a good sign!

But, in truth, i wanted to post about vitamin B12, and, strangely, just saw Rica’s  response to a different post,, mentioning her intake of it.

Thank-you Mack.

I’d like to thank Mackintosh, in particular, for defending this site from interference.  She could teach all our governments a thing or two!

Thyroid and MS ... and Bint!

Well, Christmas is over, again and, as usual, i couldn’t be more pleased, it was lovely, but i always exhausting, busy and expensive, although since we began giving quite large donations to different charities instead of some presents, it’s easier and feels so much less wasteful.


  1. Exlwejs  sxjust a question to anyone who can put my mind at rest!

i’m cutting  back the 4  modFiniil (provigil) i tKe each day for fatigue, as it ,owerso blood pressure and ialrsDy havs those symptoms. EHowever, i feel dreadful.  Typing this is so hard, so many mistakes. i feel dreadful,  nauseous and dizzy,  worried of leaving a anything on the stove, and so very  very tired.  

Pulse is a bit low, but  BP is ok. Anyone else?


Here we go again!

I’ve checked, and this is definitely pulse 6 and I finish tomorrow.My BP feels low (i’ll check when i have the new batteries) and i’m expecting the hypotension to be psychosomatic, which concerns me. Why am i prone to self imposed suggestion?  

Prior to dxi, i realised reds and greens had become muted, i didn’t lose all colour perception, but, suddenly, these colours are vivid again! overall everything is even more blurry than before ... good, because i love being a guide dog owner and, truly, don’t mind that my reflection is in soft focus! 

Some improvement!

I'm killing time, so will tell you about the news from my guru! i'm very superstitious, so waited a while to share, besides which, I've been feeling terrible....! Julia massaged my leg, helping my drop-foot, which feels like it stems from my knee. Both legs are affected, the left is the most bothersome, and the problem is intermittent, but, extremely, frequent. However, I slur less and less, in fact now only slur when I'm shattered. i've seen Julia, as a herbalist, masseur and friend, on and off, for a few years now. When my husband saw her last, she confirmed what I knew, that of her MS clients I'm the only one who's improving, that I haven't degraded in the time she's known me, that my speech has become clear and that I'm doing something right!

Mylan, New Zealand

How daft am I?

How daft can I be?  On Friday I finished what, I think, was, actually, pulse 5, but I'm not sure and need to check my diary, when I'm not cuddling my injured dog, whose happiness  is more important than counting!  But, with the need to test for myself, against advice, on my birthday, I had a couple, only a couple, of drinks, while pulsing Metroi. For anyone else who needs to find out for themself, drink at home, ill effects weren't immediate, but fairly quick. I didn't throw up, but I could have done! I felt nauseous and exhausted for a couple of days. I'm realising that improvement, for me, really is incremental, but it's there. I'm sure I'll step back again, but every good day tells me that I'm on the right track.


Pulse 4!

Nearly done! Two more tabs and I get three weeks off! And, yes, it has been tough, as DW and Sarah warned me. I've been much better at taking my ABXi on an empty tummy. I lost so much weight when I was first diagnosed, I was very skinny! But, 10 years later, I'm putting weight on, maybe too much, but I've a feeling it's good, and I feel sure, I'll be walking my very loved guide dog, soon.

It goes like this ...

I pop Metroi as soon as I wake and again, about, 8 hours later.  The third, again, 7 or 8 hours later, just before bed, taking Roxyi an hour, or so, before tea and Doxyi, after, and supplementsi then, although I sometimes forget, but always take Bs.

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