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Back again....sorry for being so rubbish

Hi everyone, well I had a lovely time with my family and have just come back from a week’s holiday in Alnmouth (Northumbria). Had a lovely time…just lots of relaxing, lovely food, lovely places, being by the sea…Alnmouth is a beautiful village right by the sea. It was a 2 minute walk to the beach. It’s the 3rd time we have stayed there…I love it! Still waiting for my vit D results so will be calling surgery tomorrow. Will try to be a bit more active on the forum. Xxx

Glad you had a nice holiday :slight_smile:

Sonia x

Hi Oonagh

Glad you had a lovely holiday, it sounds like sn idyllic place, two minutes from the sea, my idea of heaven.

Hope your test results are good.

Pam x

A quiet holiday with family is my idea of heaven, glad you enjoyed it.

Cath xx

Glad you had a lovely time hon.

And you are not rubbish! Let’s face it, life can be difficult enough without beating yourself up for not coming on the forum very often!

Always great to see you on here… doesn’t matter if it’s not often.

Pat xx

Good to hear your holiday was so relaxing and refreshing.

Pleased for you and your family.

Pollx

Thank you girls…2 days back at work and it feels like our holiday was a million years ago LOL!!

Have phone appointment with my GP this afternoon so will hopefully find out my results then

Oon

Xxx

Good luck with the doctor Oonagh

Sonia x

Hi Oonagh, Lovely to see you. Glad the holiday was so restful. Hope your results are OK! Teresa xx

Well the results are in!! I’m gone from 18.5 to 272!!! Thats way above the norm…it should be about 150 so GP has reduced my dose to 20,000iu every other day for the next 6 weeks then will have another blood test to check both my vit D and calcium levels. So, watch this space. As an aside I’m really thinking of trying LDN, I just don’t want to miss out on anything that may help. Xxx

Hi Oonagh, I dithered about trying LDN for years, finally started taking it it January and I’m so pleased I did. Bladder and bowel problems have improved by at least 80%. Nina x

People on here have tried LDN and had good results Oonagh. Unfortunately, I tried it and it made things worse (bladder in particular) which never improved. I tried it for a couple of months but then stopped as I couldn’t endure it any longer! I hope it works for you but thought I should tell you this. Teresa xx

I think you are absolutely right to tell people Teresa. It can be a great drug for some people, but not all.

I have delayed taking it as my bladder problems aren’t at all bad (bit of retention and sometimes urgency).

If my bladder problems, or bowel problems, become really problematic I will then try LDN. But while things are managable, I don’t want to ‘rock the boat’.

But Oonagh I also wish you the best of luck with it and hope it makes your MS easier to manage.

Pat x

I think the thing with LDN is not to increase the dose IF it’s working for you and don’t take what you don’t need as yu might want room for manouvre later

I started on:

1ml - week 1 - felt ok

2ml - week 2 - had suspicion about some changes but thought too early for it to be LDN

3ml - week 3 - felt GOOD, definitely LDN

4.5ml - week 4 “optimum” adult dose - day 5 of that week, spasticity worsened badly… and every thing else got a bit confused so:

3ml - week 5 - things a lttle calmer

2.5ml - week 6 & 7, think I’m on week 8 now, think I’m being a bit lazy and will go to 2ml (I just happen to have a measuring spoon got 2.5ml - i.e.half a teaspoon) - yes, I really am that lazy!

I did start taking half a baclofen 3 times daily as saw the physio start of week 6, today I only took half a pill in total as spasticity is not consistently bad so trying to only take more meds if needed.

Obviously, I can increase the dose a little if I need it - incredible that it does anything given the teensy quantities you take.

In addition to better bladder, better bowels too and still improving my weight slowly but surely (I’m still under a gastroenterologist at the hosptal about that, looks like crohns but tests don’t all stack up to that), the MS physio advised me to ask the gastro to prescribe it since I’m paying privately.

My MS nurse told me that it’s about half and half from what she hears - so good luck if you go for it. I really did feel it was one of the very few options available, so it had to be worth a try

Sonia x

Thank you all for your words of wisdom and honesty (Teresa Xxx). My bladder problems aren’t too bad (hate hate hate having to occasionally self catheterise as the catheters I used seem to scrap sometimes). but my bowel thing is driving me nuts. Never been ‘regular’ but now worse than ever. Going to have another scope about LDN but think have made my decision. Always scary when taking new drugs especially as until a year ago the most I took was ibruprofen if I had a bad head . Never mind, think its time to take the plunge. A question though; is anyone out there on LDN and taking Pregabalin? When I first starting taking it I had a really really itchy scalp for about 2 months. Since then I have had no side affects (if that even was a side affect). I’m on 600mg (300 morning, 300 at night) It doesn’t seem to make me any more tired than I normally am. Sorry for the waffle which looks even worse when I can’t do paragraphs LOL!! Off to do that scoping exercise Have a lovely weekend everyone. Weather looks good here in the lakes so hope the same for you all. Xxx

I hope I haven’t put you off Oonagh because I really hope I works for you. I had such high hopes in starting it and was very disappointed it didn’t work on me! Let us know how you get on! Weather’s quite reasonable here too - hope it stays like it! Have a great weekend! Teresa xx

Awww you haven’t put me off Teresa, was glad you told me about your experience. Its good to know both sides Xxx