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Starting LDN

After being diagnosed with SPMS in July despite only one major relapse with optic neuritis (but smaller ones I now know were ‘relapses’ ) and a bout of optic neuritis in 2004, I am now about to try my first dose of LDN!!! Just waiting for 9pm!!!

Still waiting after 6 months for my first consultant to to re-refer me for a 2nd opinion as both my ms nurse, optoneurologist and GP feel I am RRMS, I still I felt I wanted to do something and I am continuing to push for DMDs. I have done loads of research so I know I am not expecting some miracle cure from LDN but just a feeling of well-being and possibly less fatigue would be nice!!

Anyway, I am continuing to train hard with my athletics and just waiting my classification from England Athletics (fingers crossed) so I can compete over the 100m next year (much further and I go flying!!!). Much love and merry Christmas though I wish it wasn’t so blooming cold!!!

Stacey x x

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hiya

did anything fall off? has ur hair changed colour? i remember my first dose 9 years ago…

one decision i am glad of. let us know how u get on…

ellie

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Best thing l ever did - was to start taking LDN. About 7yrs ago.Did have to stop it last March as l had a total knee- replacement - and l could not take codeine alongside the LDN. And wow - did l miss it. l have had SPMS for 32yrs.

Thanks guys and haha Ellie - I am still ginger !!! I read all the old posts on here as well as lots of web research and decided to go for it!!! glad it’s worked well for your both!! X x x

Don’t forget to let us know if ldn helps to improve your personal best.

There was an interview on radio 5 today with Kadina Cox from Leeds, who is also a sprinter with MS. It starts at about 11.43 in case you are interested.

Thank you really enjoyed listening to that!! It will be interesting to see what happens next year with classification etc but just proves you can still run (although be it not as you used to) with MS!!! Stacey x

So glad I started this - I look so much better - in fact people keep commenting on how well I look!!

Put on a few pounds as I was a bit underweight, my hair is glowing and nails have grown without splitting off!!

In terms of my MS symptoms, sleeping lots still with my naps but when awake I feel better - but the biggest and best thing (which I hate to disclose on a public forum but it’s amazing) I have been to the toilet now (no 2- sorry don’t read more if sensitive as it’s probably TMI - but the effect on my bowel is the worse thing MS has done to me) cough, cough “hands free” after many years (previously undiagnosed as I was to embarrassed to tel,the doc) of ‘assistance’ I can’t quite believe it! It’s not every time but it’s happening more and more. Enough of that anyway!! Haha!

Also have my England athletics classification at the end of the month - fingers crossed I can do us MSers proud next year -I pray I am good enough and get the opportunity to run for GB next year. Happy new year!! Stacey x x

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so pleased the ldn is working for you,did you have any side effects with it at all,and what dose are you taking ?

J x

I’m also pleased LDN is working for you! So you have been taking it for approx. 3wks. & you have good results, can I also ask what dose you’re on now, please?

I started mine last October but, as yet, haven’t felt or noticed any difference…

Rosina x

Hi! I am just starting 4mg, it was really at 3mg I started to notice a difference. It has disturbed my sleep a bit as I have very vivid dreams and at first it may me feel a bit irritable - or maybe it was just the time of the month!! Haven’t noticed any difference in the electric shocks down my legs, tremors, foot drop and clonus but it has positively impacted my bowels and bladder and I feel a lot better in myself x x

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Hi Shurrell, I started with 1.5mg & worked up to 4mg but noticed everything seemed slightly more difficult, after a week of feeling this I dropped down to 3.5mg & lost the ‘more difficult’ feeling, so I guess 3.5mg is the right dose for me although I’m not feeling any benefit so far. I’ll give it another 3mths but if nothing happens, I think it’s just not working for me

Rosina x

Sorry to hear it’s not working for you :frowning:

it does say that it can take 6 months or so to work where as others say they felt better after their first dose!

Do you take any other treatment? I am not on any DMDs at the moment as my neuro says I am secondary progressive but I am hoping a second opinion will be RRMS so I can start tecifidera. My MS nurse thinks I have RRMS too as well as the optoneurologist - he even wrote to my neuro as did my MS nurse but he has just ignored this. I see my MS nurse next week and hope to sort it out x x x