Cpnhelp.org

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 doxy 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 CAP is not plain sailing.

About a week late ... but yesterday morning I started pulse 50. It is a metronidazole pulse, this time at the correct dosage (here in the UK, that is 3x400 mg per day). My last pulse was really the first metronidazole pulse and I inadvertently used half dose. Although I have been doing antibiotics for some years now, I shall remain mindful of our editor's recent advice to me, now that I have switched to metro; I shall remain cautious.I have just spoken of remaining cautious ... I should also try to remain hopeful too. Any novelty value in being disabled has long since worn off. There are barriers to nearly everything; whether that be booking a holiday or even just eating out.

Hello everyone,before Christmas i felt good, really on the mend, although I knew i had a way to go before my MS 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.

I suffered with progressively worsening pain in my hands, wrists, arms, and shoulders for 4 years. Last year, I was diagnosed with polymyalgia rheumatica and had such severe pain by then I was prescribed 20 mg of prednisone to try to alleviate the progression and pain. However when I dropped the dose biweekly per doctor instruction, the pain was returning.  Although I did what the doctor ordered, over time the pain was getting bad again and I couldn’t get below 10 mg.

I’m so sorry for banging on with the same subject!i thought i had a uti, 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,Jane

Little things can mean a lot.Although I do not dwell on it, I cannot deny that my mobility has slowly but surely become steadily worse over these years of MS.

I will be late for my own funeral. As per normal for me, I am late starting this pulse too. This is pulse 49 and will be a mixed pulse; half tinidazole and half metronidazole. I only have a few tini tabs but I have a box of 21 metronidazole (7 days supply). I'll use a few out of those for this pulse. My next pulse will be all 5 days on metro. After that, I have no idea how I will proceed. I have only ever taken metro once before ... and it was surprisingly OK.In the meantime, I better get myself a script for some azithromycin; I only have 3 left. At least they are easy enough to pick up.G.

After my last pulse i seemed to develop a bad uti. I seemed to be responding very well to the cap whenj, the day i finished the Metro,  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 uti?Jane

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?

Day1 of pulse 7 and, so far,  i can feel the abx! 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.