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How are we all doing?

Hi gang, hope you’re all doing well and enjoying the weekend?

I was going to up the dose of LDN today to 1.5 ml but I was meeting with someone this morning and wanted to be ok for that, so will up the dose tomorrow.

I met up with a young woman with MS who lives near me and we are trying to set up a local group for people with MS. The MS Society are going to help us… so we went and saw a very nice room in the library that we hope we can use.

So that was a good positive experience!

AND we check out their disabled toilet and noticed the orange emergency cord was tied up so if someone was on the floor they couldn’t reach it… so reported that. Felt like a health and safety inpector!

Of course it left me knackered… but hey ho I feel good about this and hope we can get it together.

Going to get into bed… got a home-made pasta sauce all ready for the slow-cooker tomorrow (my life is just one thrill after another… ).

Love to all,

Pat x

It sounds like you had a lovely positive day Pat. Had a lovely one myself. G took me for a lovely drive and then to a nice pub…monkfish on a bed of green thai rissoto with some fab vegetables on the side, oh, and a crisp glass of chardonnay…yummy.

My LDN prescription has been sent to Dicksons so am just waiting to hear from them. Just a teeny question Pat; I got an email from E-med to say the prescription had been sent, it then said I had to email Dicksons to arrange delivery of the medication. Did you have to do that? I thought all the info was sent to them?

Anyway, I hope you’re feeling okay today and enjoy the homemade pasta sauce, its always so much nicer when you make it yourself .

Oonagh

Xxx

Hi Pat,

hope your group gets off to a good start,good on ya.

know just what you mean about ‘one thrill after another’ lol… hope the LDN is making you feel better,i keep thinking of trying it,but thats as far as i get thinking about it,darent take the plunge,i know its supposed to be ok and not have any many side effects,but knowing me i would get a bad reaction and make my ms worse.

enjoy your sunday

J x

Pat I hope your group takes off well too. You and many others on this forum have been an enormous help to me coping with my diagnosis. I would definitely not be in what I think of as my comfortable life without all of you. I think your venture would benefit so many people. Having people to talk to who understand what you’re feeling or experiencing is much better than asking questions to someone who’s read a book or done a course. I’ve never felt the need to contact my ms nurse, I’d rather come to the forum.

I wish there was somewhere like that I could go around where I live. I know there’s an ms society group that meet at the hospital one night a week but as it’s 50 miles away, and a lot of county roads I’m not keen on the drive, especially in winter. I might go in summer, but this forum has kept me positive.

I think you’re doing a wonderful thing, well done and good luck with it.

Cath xx

Hi Oonagh, they don’t explain things very well do they.

I had an email from Dicksons with membership number etc… and I then went on their site and joined with the number they gave me… then I went into the ‘prescriptions’ bit and paid for the first month (there were 3 prescriptions waiting for first 3 months).

I’m not sure if they send it with an invoice so you can pay when you’ve got it. None of this was explained.

However I suggest you call them in the morning and ask them.

Once they sent it, it came in 2 days.

Good luck hon. I just went up to 1.5 ml today.

Pat x

Hi J, I was thinking about it for a few years.

Take your time hon… you’ll know when the time is right. I noticed some progression over the summer so that was what made up my mind.

Pat x

Hi Mrs J, I too took years to make up my mind to give LDN a try…so happy I did but even so I’d say…in your own time. One day I had been reading a post from Whammel and just thought to myself he sounds like such a sensible guy…what am I so scared about …and so I did it…that was about a year ago…I believe I’m right in saying that Whammel has been using it for about ten years. You’ll know when the time is right. Take care, Nina x

thanks Pat,and Nina,like you say i will try it in my own time,i suppose.

J x

Thank you Pat, just getting a bit confused about what I’m supposed to do. I’ll wait until after work to see if I’ve heard from Dicksons. Lotsa luck with your ‘upgrade’ Oonagh Xxx

Good luck with the new group Pat, sounds like it’ll keep you busy (not too busy tho!)

I’m sulking as I’ve weaned myself right down on Baclofen in readiness for new Tizanidine prescription but hubby has just phoned to tell me that 3 town centre pharmacies don’t even have it so Boots will have to order it. It’s really annoying but did make me realise that whilst Baclofen has it’s faults, my right leg judders like crazy when I wake and stretch in bed… I had completely forgotten about that!

I spoke with my Neuro about the spasticity problems last week and we briefly discussed my decision to take LDN - he actually ended up agreeing it was a “kinder” drug than most we take :slight_smile:

Hope everyone is well

Sonia x

Not sure if you already take magnesium, I but I find 375mg eases problems with spasm and cramp and might be worth trying. Massage helps and a power plate is useful if you can get access.

I hope your new drug arrives soon.

Good luck with your new venture Pat, sounds like a cracking idea, just make sure you dont overdo it.

Pam x

Thanks Whammel, I’ll get some as no, I’m not taking any a the moment

Sonia x

You might need to experiment a bit with the amount, but be careful of taking way too much, because it can act as a laxative in high doses.

I use www.healthspan.co.uk and find them pretty good.