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LDN & Tysabri& bladder problems-so far so good

88Oh boy, life’s been a bit of a roller coaster the last couple of years. I sing in a very good choir. We work really hard and after a particularly tough Verdi requiem, I started to become more and more incontinent.

so, I got out my naltrexone pills and made some LDN. It helped but only at night. I’ve had bladder tests( omg, the indignity) and a consultation with the top neuro in Galicia. My neuro wanted a second opinion.

in her view, my MS is aggressive, not progressive. Yay! Still RRMS! I was diagnosed in 2000. I do have to take Fampyra and have been upgraded to Tysabri.

she recommended starting immediately, but it was 8months before funding came through. I’m JC virus positive (scary).

I can have this security for 2 years only. Bugger.

This week I started LDN but double dosing this time and blow me! My incontinence has improved so much that I can manage without pads! I had read about am and pm dosing. Like many people, I have had great symptom relief.

I wonder if other mad experimenters have had symptom relief too?

i also take Sativex. It’s magic, Sativex. Without it the pain is unbearable. My right side spasticity was hideous. But, after a couple of weeks, I could stand and sing again. I just did 2 nights of The Messiah after a very tough week of rehearsals. 8 to-11each night

So thankyou SERGAS, the Galician NHS. Thankyou Dr Laura, my wonderful neurologist.

sometimes good things happen. I just hope I don’t die…those risks & JC virus positive. I’m at greater risk because I had my immune system wiped out by Tecfidera.

its only been 2 months.

I have been taking LDN at 4.5mgs and have been very stable.

It helps a lot with my extreme mood swings, my sudden anger events have now gone thank goodness.

When you say you are double dosing, how much are you taking ?

hiya

i took ldn for 12 years. tysabri for 5. took them both together for 5 years-cant find anyone else who did despite my efforts. currently no medication-ldn stopped a year ago and tysabri 4 months ago. have no idea what if anything is going to happen as i am already in a fair state since 2012 following a huge attack (carers in blah blah blah)

what do u mean by double dosing? twice 4.5 or 2 smaller doses?

ellie